THE 2002 OFFICIAL PATIENT’S SOURCEBOOK
on
LCERATIVE OLITIS
J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS
ii
ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1
Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The 2002 Official Patient’s Sourcebook on Ulcerative Colitis: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83409-1 1. Ulcerative Colitis-Popular works. I. Title.
iii
Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.
Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail:
[email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.
iv
Dedication To the healthcare professionals dedicating their time and efforts to the study of ulcerative colitis.
Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to ulcerative colitis. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.
v
About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
vi
About ICON Health Publications In addition to ulcerative colitis, Official Patient’s Sourcebooks are available for the following related topics: ·
The Official Patient's Sourcebook on Appendicitis
·
The Official Patient's Sourcebook on Autoimmune Hepatitis
·
The Official Patient's Sourcebook on Bacteria and Foorborne Illness
·
The Official Patient's Sourcebook on Barrett's Esophagus
·
The Official Patient's Sourcebook on Celiac Disease
·
The Official Patient's Sourcebook on Cirrhosis of the Liver
·
The Official Patient's Sourcebook on Constipation
·
The Official Patient's Sourcebook on Crohn Disease
·
The Official Patient's Sourcebook on Cyclic Vomiting Syndrome
·
The Official Patient's Sourcebook on Diarrhea
·
The Official Patient's Sourcebook on Diverticular Disease
·
The Official Patient's Sourcebook on Fecal Incontinence
·
The Official Patient's Sourcebook on Gallstones
·
The Official Patient's Sourcebook on Gas
·
The Official Patient's Sourcebook on Gastritis
·
The Official Patient's Sourcebook on Gastroparesis
·
The Official Patient's Sourcebook on Hemolytic Uremic Syndrome
·
The Official Patient's Sourcebook on Hemorrhoids
·
The Official Patient's Sourcebook on Hepatitis A
·
The Official Patient's Sourcebook on Hepatitis B
·
The Official Patient's Sourcebook on Hepatitis C
·
The Official Patient's Sourcebook on Hiatal Hernia
·
The Official Patient's Sourcebook on Hirschsprung
·
The Official Patient's Sourcebook on Indigestion
·
The Official Patient's Sourcebook on Inguinal Hernia
·
The Official Patient's Sourcebook on Intestinal Pseudo-obstruction
·
The Official Patient's Sourcebook on Irritable Bowel Syndrome
·
The Official Patient's Sourcebook on Lactose Intolerance
·
The Official Patient's Sourcebook on Ménétrier
·
The Official Patient's Sourcebook on Pancreatitis
·
The Official Patient's Sourcebook on Peptic Ulcer
·
The Official Patient's Sourcebook on Porphyria
·
The Official Patient's Sourcebook on Primary Biliary Cirrhosis
·
The Official Patient's Sourcebook on Primary Sclerosing Cholangitis
·
The Official Patient's Sourcebook on Proctitis
vii
·
The Official Patient's Sourcebook on Rapid Gastric Emptying
·
The Official Patient's Sourcebook on Short Bowel Syndrome
·
The Official Patient's Sourcebook on Whipple Disease
·
The Official Patient's Sourcebook on Wilson's Disease
·
The Official Patient's Sourcebook on Zollinger-ellison Syndrome
To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health
Contents
ix
Table of Contents INTRODUCTION...................................................................................... 1
Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4
PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON ULCERATIVE COLITIS: GUIDELINES 9
Overview............................................................................................................... 9 What Is Ulcerative Colitis? ................................................................................ 11 What Causes Ulcerative Colitis?........................................................................ 12 What Are the Symptoms of Ulcerative Colitis? ................................................. 12 How Is Ulcerative Colitis Diagnosed? ............................................................... 13 What Is the Treatment for Ulcerative Colitis? ................................................... 13 Research .............................................................................................................. 16 Is Colon Cancer a Concern? ............................................................................... 16 Resources ............................................................................................................ 17 More Guideline Sources ..................................................................................... 18 Vocabulary Builder............................................................................................. 30
CHAPTER 2. SEEKING GUIDANCE ....................................................... 35
Overview............................................................................................................. 35 Associations and Ulcerative Colitis.................................................................... 35 Finding More Associations................................................................................. 43 Finding Doctors.................................................................................................. 44 Selecting Your Doctor ........................................................................................ 46 Working with Your Doctor ................................................................................ 46 Broader Health-Related Resources ..................................................................... 48 Vocabulary Builder............................................................................................. 48
CHAPTER 3. CLINICAL TRIALS AND ULCERATIVE COLITIS ................ 49
Overview............................................................................................................. 49 Recent Trials on Ulcerative Colitis .................................................................... 52 Benefits and Risks............................................................................................... 54 Keeping Current on Clinical Trials.................................................................... 57 General References.............................................................................................. 58 Vocabulary Builder............................................................................................. 59
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 61 CHAPTER 4. STUDIES ON ULCERATIVE COLITIS .................................. 63
Overview............................................................................................................. 63 The Combined Health Information Database ..................................................... 63
x
Contents
Federally-Funded Research on Ulcerative Colitis .............................................. 72 E-Journals: PubMed Central .............................................................................. 84 The National Library of Medicine: PubMed ...................................................... 85 Vocabulary Builder............................................................................................. 89
CHAPTER 5. BOOKS ON ULCERATIVE COLITIS .................................... 99
Overview............................................................................................................. 99 Book Summaries: Federal Agencies .................................................................... 99 Book Summaries: Online Booksellers ............................................................... 103 The National Library of Medicine Book Index ................................................. 105 Chapters on Ulcerative Colitis.......................................................................... 107 Directories......................................................................................................... 120 General Home References ................................................................................. 121 Vocabulary Builder........................................................................................... 122
CHAPTER 6. MULTIMEDIA ON ULCERATIVE COLITIS ....................... 127
Overview........................................................................................................... 127 Video Recordings .............................................................................................. 127 Bibliography: Multimedia on Ulcerative Colitis .............................................. 130 Vocabulary Builder........................................................................................... 131
CHAPTER 7. PERIODICALS AND NEWS ON ULCERATIVE COLITIS .... 133
Overview........................................................................................................... 133 News Services & Press Releases ....................................................................... 133 Newsletters on Ulcerative Colitis..................................................................... 142 Newsletter Articles ........................................................................................... 143 Academic Periodicals covering Ulcerative Colitis............................................ 145 Vocabulary Builder........................................................................................... 146
CHAPTER 8. PHYSICIAN GUIDELINES AND DATABASES ................... 147
Overview........................................................................................................... 147 NIH Guidelines................................................................................................. 147 NIH Databases.................................................................................................. 148 Other Commercial Databases ........................................................................... 160 The Genome Project and Ulcerative Colitis ..................................................... 161 Specialized References....................................................................................... 165 Vocabulary Builder........................................................................................... 165
CHAPTER 9. DISSERTATIONS ON ULCERATIVE COLITIS.................... 167
Overview........................................................................................................... 167 Dissertations on Ulcerative Colitis .................................................................. 167 Keeping Current ............................................................................................... 168
PART III. APPENDICES .................................................. 169 APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 171
Overview........................................................................................................... 171 Your Medications: The Basics .......................................................................... 172 Learning More about Your Medications .......................................................... 173
Contents
xi
Commercial Databases...................................................................................... 177 Contraindications and Interactions (Hidden Dangers) ................................... 180 A Final Warning .............................................................................................. 181 General References............................................................................................ 182 Vocabulary Builder........................................................................................... 182
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 185
Overview........................................................................................................... 185 What Is CAM? ................................................................................................. 185 What Are the Domains of Alternative Medicine?............................................ 186 Can Alternatives Affect My Treatment? ......................................................... 189 Finding CAM References on Ulcerative Colitis............................................... 190 Additional Web Resources................................................................................ 203 General References............................................................................................ 219 Vocabulary Builder........................................................................................... 220
APPENDIX C. RESEARCHING NUTRITION ......................................... 221
Overview........................................................................................................... 221 Food and Nutrition: General Principles........................................................... 222 Finding Studies on Ulcerative Colitis .............................................................. 226 Federal Resources on Nutrition........................................................................ 227 Additional Web Resources................................................................................ 228 Vocabulary Builder........................................................................................... 238
APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 241
Overview........................................................................................................... 241 Preparation ....................................................................................................... 241 Finding a Local Medical Library ...................................................................... 242 Medical Libraries Open to the Public............................................................... 242
APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 249
Overview........................................................................................................... 249 Your Rights as a Patient................................................................................... 249 Patient Responsibilities .................................................................................... 253 Choosing an Insurance Plan............................................................................. 254 Medicare and Medicaid .................................................................................... 256 NORD’s Medication Assistance Programs ..................................................... 259 Additional Resources ........................................................................................ 260 Vocabulary Builder........................................................................................... 261
ONLINE GLOSSARIES.................................................... 263 Online Dictionary Directories.......................................................................... 267
ULCERATIVE COLITIS GLOSSARY ........................... 269 General Dictionaries and Glossaries ................................................................ 289
INDEX................................................................................... 291
Introduction
1
INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3
Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2
2
Ulcerative Colitis
Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The 2002 Official Patient’s Sourcebook on Ulcerative Colitis has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to ulcerative colitis, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on ulcerative colitis. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on ulcerative colitis should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate
Introduction
3
options is always up to the patient in consultation with their physician and healthcare providers.
Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching ulcerative colitis (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to ulcerative colitis. It also gives you sources of information that can help you find a doctor in your local area specializing in treating ulcerative colitis. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with ulcerative colitis. Part II moves on to advanced research dedicated to ulcerative colitis. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on ulcerative colitis. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with ulcerative colitis or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with ulcerative colitis. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with ulcerative colitis.
Scope While this sourcebook covers ulcerative colitis, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that ulcerative colitis is often considered a synonym or a condition closely related to the following: ·
Chronic Non-specific Ulcerative Colitis
·
Colitis Gravis
4
Ulcerative Colitis
·
Idiopathic Non-specific Ulcerative Colitis
·
Idiopathic Proctocolitis
·
Inflammatory Bowel Disease (ibd)
·
Nonspecific Ulcerative Colitis
·
Thromboulcerative Colitis
In addition to synonyms and related conditions, physicians may refer to ulcerative colitis using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for ulcerative colitis:4 ·
556 idiopathic proctocolitis
·
556.9 ulcerative colitis
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to ulcerative colitis. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.
Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as 4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”
Introduction
5
recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with ulcerative colitis will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with ulcerative colitis is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of ulcerative colitis, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors
7
PART I: THE ESSENTIALS
ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on ulcerative colitis. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of ulcerative colitis to you or even given you a pamphlet or brochure describing ulcerative colitis. Now you are searching for more indepth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.
Guidelines
9
CHAPTER 1. THE ESSENTIALS ON ULCERATIVE COLITIS: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on ulcerative colitis. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on ulcerative colitis can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.
The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on ulcerative colitis. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.
5
Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.
10 Ulcerative Colitis
There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with ulcerative colitis and associated conditions: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); guidelines available at http://www.niddk.nih.gov/health/health.htm
Among these, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is particularly noteworthy. The NIDDK’s mission is to conduct and support research on many of the most serious diseases affecting public health.6 The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines. The NIDDK’s Division of Intramural Research encompasses the broad spectrum of metabolic diseases such as diabetes, inborn errors of metabolism, endocrine disorders, mineral metabolism, digestive diseases, nutrition, urology and renal disease, and hematology. Basic research studies include biochemistry, nutrition, pathology, histochemistry, chemistry, physical, chemical, and molecular biology, pharmacology, and toxicology. NIDDK extramural research is organized into divisions of program areas: ·
Division of Diabetes, Endocrinology, and Metabolic Diseases
·
Division of Digestive Diseases and Nutrition
·
Division of Kidney, Urologic, and Hematologic Diseases
The Division of Extramural Activities provides administrative support and overall coordination. A fifth division, the Division of Nutrition Research Coordination, coordinates government nutrition research efforts. The Institute supports basic and clinical research through investigator-initiated This paragraph has been adapted from the NIDDK: http://www.niddk.nih.gov/welcome/mission.htm. “Adapted” signifies that a passage is reproduced exactly or slightly edited for this book. 6
Guidelines 11
grants, program project and center grants, and career development and training awards. The Institute also supports research and development projects and large-scale clinical trials through contracts. The following patient guideline was recently published by the NIDDK on ulcerative colitis.
What Is Ulcerative Colitis?7 Ulcerative colitis is a disease that causes inflammation and sores, called ulcers, in the top layers of the lining of the large intestine. The inflammation usually occurs in the rectum and lower part of the colon, but it may affect the entire colon. Ulcerative colitis rarely affects the small intestine except for the lower section, called the ileum. Ulcerative colitis may also be called colitis, ileitis, or proctitis.
The inflammation makes the colon empty frequently, causing diarrhea. Ulcers form in places where the inflammation has killed colon lining cells; the ulcers bleed and produce pus and mucus. Ulcerative colitis is an inflammatory bowel disease (IBD), the general name for diseases that cause inflammation in the intestines. Ulcerative colitis can be difficult to diagnose because its symptoms are similar to other intestinal disorders such as irritable bowel syndrome and to another type of IBD called Crohn’s disease. Crohn’s disease differs from ulcerative colitis because it Adapted from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): http://www.niddk.nih.gov/health/digest/pubs/colitis/colitis.htm. 7
12 Ulcerative Colitis
causes inflammation deeper within the intestinal wall. Crohn’s disease usually occurs in the small intestine, but it can also occur in the mouth, esophagus, stomach, duodenum, large intestine, appendix, and anus. Ulcerative colitis occurs most often in people ages 15 to 40, although children and older people sometimes develop the disease. Ulcerative colitis affects men and women equally and appears to run in some families.
What Causes Ulcerative Colitis? Theories about what causes ulcerative colitis abound, but none have been proven. The most popular theory is that the body’s immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestinal wall. People with ulcerative colitis have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or a result of the disease. Ulcerative colitis is not caused by emotional distress or sensitivity to certain foods or food products, but these factors may trigger symptoms in some people.
What Are the Symptoms of Ulcerative Colitis? The most common symptoms of ulcerative colitis are abdominal pain and bloody diarrhea. Patients also may experience: ·
Fatigue.
·
Weight loss.
·
Loss of appetite.
·
Rectal bleeding.
·
Loss of body fluids and nutrients.
About half of patients have mild symptoms. Others suffer frequent fever, bloody diarrhea, nausea, and severe abdominal cramps. Ulcerative colitis may also cause problems such as arthritis, inflammation of the eye, liver disease (fatty liver, hepatitis, cirrhosis, and primary sclerosing cholangitis), osteoporosis, skin rashes, anemia, and kidney stones. No one knows for sure why problems occur outside the colon. Scientists think these complications may occur when the immune system triggers inflammation in other parts of
Guidelines 13
the body. These problems are usually mild and go away when the colitis is treated.
How Is Ulcerative Colitis Diagnosed? A thorough physical exam and a series of tests may be required to diagnose ulcerative colitis. Blood tests may be done to check for anemia, which could indicate bleeding in the colon or rectum. Blood tests may also uncover a high white blood cell count, which is a sign of inflammation somewhere in the body. By testing a stool sample, the doctor can tell if there is bleeding or infection in the colon or rectum. The doctor may do a colonoscopy. For this test, the doctor inserts an endoscope--a long, flexible, lighted tube connected to a computer and TV monitor--into the anus to see the inside of the colon and rectum. The doctor will be able to see any inflammation, bleeding, or ulcers on the colon wall. During the exam, the doctor may do a biopsy, which involves taking a sample of tissue from the lining of the colon to view with a microscope. A barium enema x-ray of the colon may also be required. This procedure involves filling the colon with barium, a chalky white solution. The barium shows up white on x-ray film, allowing the doctor a clear view of the colon, including any ulcers or other abnormalities that might be there.
What Is the Treatment for Ulcerative Colitis? Treatment for ulcerative colitis depends on the seriousness of the disease. Most people are treated with medication. In severe cases, a patient may need surgery to remove the diseased colon. Surgery is the only cure for ulcerative colitis. Some people whose symptoms are triggered by certain foods are able to control the symptoms by avoiding foods that upset their intestines, like highly seasoned foods or milk sugar (lactose). Each person may experience ulcerative colitis differently, so treatment is adjusted for each individual. Emotional and psychological support is important. Some people have remissions--periods when the symptoms go away--that last for months or even years. However, most patients’ symptoms eventually return. This changing pattern of the disease means one cannot always tell when a treatment has helped.
14 Ulcerative Colitis
Someone with ulcerative colitis may need medical care for some time, with regular doctor visits to monitor the condition.
Drug Therapy Most patients with mild or moderate disease are first treated with 5-ASA agents, a combination of the drugs sulfonamide, sulfapyridine, and salicylate that helps control inflammation. Sulfasalazine is the most commonly used of these drugs. Sulfasalazine can be used for as long as needed and can be given along with other drugs. Patients who do not do well on sulfasalazine may respond to newer 5-ASA agents. Possible side effects of 5-ASA preparations include nausea, vomiting, heartburn, diarrhea, and headache. People with severe disease and those who do not respond to mesalamine preparations may be treated with corticosteroids. Prednisone and hydrocortisone are two corticosteroids used to reduce inflammation. They can be given orally, intravenously, through an enema, or in a suppository, depending on the location of the inflammation. Corticosteroids can cause side effects such as weight gain, acne, facial hair, hypertension, mood swings, and increased risk of infection, so doctors carefully watch patients taking these drugs. Other drugs may be given to relax the patient or to relieve pain, diarrhea, or infection. Occasionally, symptoms are severe enough that the person must be hospitalized. For example, a person may have severe bleeding or severe diarrhea that causes dehydration. In such cases the doctor will try to stop diarrhea and loss of blood, fluids, and mineral salts. The patient may need a special diet, feeding through a vein, medications, or sometimes surgery.
Surgery About 25 percent to 40 percent of ulcerative colitis patients must eventually have their colons removed because of massive bleeding, severe illness, rupture of the colon, or risk of cancer. Sometimes the doctor will recommend removing the colon if medical treatment fails or if the side effects of corticosteroids or other drugs threaten the patient’s health. One of several surgeries may be done. The most common surgery is a proctocolectomy with ileostomy, which is done in two stages. In the
Guidelines 15
proctocolectomy, the surgeon removes the colon and rectum. In the ileostomy, the surgeon creates a small opening in the abdomen, called a stoma, and attaches the end of the small intestine, called the ileum, to it. This type of ileostomy is called a Brooke ileostomy. Waste will travel through the small intestine and exit the body through the stoma. The stoma is about the size of a quarter and is usually located in the lower right part of the abdomen near the beltline. A pouch is worn over the opening to collect waste, and the patient empties the pouch as needed. An alternative to the Brooke ileostomy is the continent ileostomy. In this operation, the surgeon uses the ileum to create a pouch inside the lower abdomen. Waste empties into this pouch, and the patient drains the pouch by inserting a tube into it through a small, leakproof opening in his or her side. The patient must wear an external pouch for only the first few months after the operation. Possible complications of the continent ileostomy include malfunction of the leakproof opening, which requires surgical repair, and inflammation of the pouch (pouchitis), which is treated with antibiotics. An ileoanal anastomosis, or pull-through operation, allows the patient to have normal bowel movements because it preserves part of the rectum. This procedure is becoming increasingly common for ulcerative colitis. In this operation, the surgeon removes the diseased part of the colon and the inside of the rectum, leaving the outer muscles of the rectum. The surgeon then attaches the ileum to the inside of the rectum and the anus, creating a pouch. Waste is stored in the pouch and passed through the anus in the usual manner. Bowel movements may be more frequent and watery than usual. Pouchitis is a possible complication of this procedure. Not every operation is appropriate for every person. Which surgery to have depends on the severity of the disease and the patient’s needs, expectations, and lifestyle. People faced with this decision should get as much information as possible by talking to their doctors, to nurses who work with colon surgery patients (enterostomal therapists), and to other colon surgery patients. Patient advocacy organizations can direct people to support groups and other information resources. (See Resources for the names of such organizations.) Most people with ulcerative colitis will never need to have surgery. If surgery ever does become necessary, however, some people find comfort in knowing that after the surgery, the colitis is cured and most people go on to live normal, active lives.
16 Ulcerative Colitis
Research Researchers are always looking for new treatments for ulcerative colitis. Several drugs are being tested to see whether they might be useful in treating the disease: ·
Budesonide. A corticosteroid called budesonide may be nearly as effective as prednisone in treating mild ulcerative colitis, and it has fewer side effects.
·
Cyclosporine. Cyclosporine, a drug that suppresses the immune system, may be a promising treatment for people who do not respond to 5-ASA preparations or corticosteroids.
·
Nicotine. In an early study, symptoms improved in some patients who were given nicotine through a patch or an enema. (Using nicotine as treatment is still experimental--the findings do not mean that people should go out and buy nicotine patches or start smoking.)
·
Heparin. Researchers overseas are examining whether the anticoagulant heparin can help control colitis by preventing blood clots.
Is Colon Cancer a Concern? About 5 percent of people with ulcerative colitis develop colon cancer. The risk of cancer increases with the duration and the extent of involvement of the colon. For example, if only the lower colon and rectum are involved, the risk of cancer is not higher than normal. However, if the entire colon is involved, the risk of cancer may be as great as 32 times the normal rate. Sometimes precancerous changes occur in the cells lining the colon. These changes are called “dysplasia.” People who have dysplasia are more likely to develop cancer than those who do not. (Doctors look for signs of dysplasia when doing a colonoscopy and when examining tissue removed during the test.) According to 1997 guidelines on screening for colon cancer, people who have had IBD throughout their colon for at least 8 years and those who have had IBD in only the left colon for at least 15 years should have a colonoscopy every 1 to 2 years to check for dysplasia. Such screening has not been proven to reduce the risk of colon cancer, but it may help identify cancer early should it develop. (These guidelines were produced by an independent expert panel and endorsed by numerous organizations, including the
Guidelines 17
American Cancer Society, American College of Gastroenterology, American Society of Colon and Rectal Surgeons, and the Crohn’s & Colitis Foundation of America Inc., among others.)
Resources Crohn’s & Colitis Foundation of America Inc. 386 Park Avenue South, 17th floor New York, NY 10016-8804 Tel: (800) 932-2423 or (212) 685-3440 E-mail:
[email protected] Home page: http://www.ccfa.org Pediatric Crohn’s & Colitis Association Inc. P.O. Box 188 Newton, MA 02168 Tel: (617) 489-5854 Reach Out for Youth with Ileitis and Colitis Inc. 15 Chemung Place Jericho, NY 11753 Tel: (516) 822-8010 United Ostomy Association, Inc. 19772 MacArthur Blvd. #200 Irvine, CA 92612-2405 Tel: (800) 826-0826 or (949) 660-8624 Fax: (949) 660-9262 E-mail:
[email protected] Home page: http://www.uoa.org National Digestive Diseases Information Clearinghouse 2 Information Way Bethesda, MD 20892-3570 E-mail: National Digestive Diseases Information Clearinghouse The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health under the U.S. Department of Health and Human Services. Established in 1980, the clearinghouse provides information about digestive diseases to people with digestive disorders and to their families, health care professionals, and the public. NDDIC answers inquiries;
18 Ulcerative Colitis
develops, reviews, and distributes publications; and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases. Publications produced by the clearinghouse are reviewed carefully for scientific accuracy, content, and readability.
More Guideline Sources The guideline above on ulcerative colitis is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to ulcerative colitis. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with ulcerative colitis. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.
Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.
Guidelines 19
The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on ulcerative colitis and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·
Ulcerative Colitis Source: St. Albans, England: National Association for Colitis and Crohn's Disease (NACC). 1999. 16 p. Contact: Available from National Association for Colitis and Crohn's Disease (NACC). 4 Beaumont House, Sutton Road, St. Albans, Hertfordshire, AL1 5HH. 01727 844296. E-mail:
[email protected]. Website: www.nacc.org.uk. Price: Single copy free to members. Summary: Ulcerative colitis (UC) is a disease of the lining of the large bowel or colon. This booklet, written for people newly diagnosed with UC, offers an overview of the disease and its treatment. The booklet first describes how the colon works within the digestive system, then discusses how UC affects the working of the colon, the symptoms of the disease, how UC is diagnosed, the causes of UC, dietary impact on the disease, treatment options, drug therapy (antiinflammatory agents, antidiarrheals, analgesics, anemia treatments, nutritional aids), and surgical options (proctocolectomy and ileostomy, colectomy with ileostomy and mucous fistula, colectomy and ileorectal anastomosis, and proctocolectomy with ileal reservoir or pouch). Although the symptoms and signs of UC can disappear for many years, and even for a lifetime, without treatment, the more usual course is one of periodic flareups. The condition is normally managed by drugs, but surgery may become necessary under some circumstances. The booklet concludes with a list of commonly asked questions and answers, covering prognosis, the interrelationship between UC and bowel cancer, UC and pregnancy, the epidemiology of UC, and the role of heredity in UC. 5 figures. 2 tables.
·
Q and A. Crohn's Disease and Ulcerative Colitis: Emotional Factors Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1999. 8 p.
20 Ulcerative Colitis
Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: This pamphlet, written in question-and-answer format, answers some of the most commonly asked questions about the role of emotional factors in Crohn's disease and ulcerative colitis (known together as inflammatory bowel disease or IBD's). The authors point out that IBD's are biological disorders of unknown origin and are not caused by tension or anxiety, or more common in people with certain personality types. The brochure clarifies the difference between IBD's and a completely different condition, irritable bowel syndrome, the cause of which does seem to be related to emotional factors. The authors suggest that this brochure be used to explain to friends and family that IBD's are not caused by being 'overly emotional'. Specific topics addressed include the possible role of severe chronic stress in increasing inflammation; emotional difficulties caused by the challenges of living with an IBD; feelings of guilt; ways to cope with fears of relapse, attacks in public places, and travel; medications used to cope with psychological difficulties; psychiatric consultation; the special concerns of young people; the emotional effects of ileostomy surgery; and discussion of attitudes which may help IBD patients to better cope with these diseases. ·
Q and A. Crohn's Disease and Ulcerative Colitis: A Guide for Children and Teenagers Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1999. 8 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: This pamphlet, written for children and teenagers, discusses Crohn's disease and ulcerative colitis (known together as inflammatory bowel disease or IBD's). The brochure explains the possible causes of IBD; how IBD affects the gastrointestinal tract; treatment; types of medicine and their side effects; the role of diet and nutrition in treatment; physical growth and IBD; tests used to diagnose and monitor IBD; and surgery. The authors also discuss attitudes and habits that may help children and teenagers with IBD to feel better.
Guidelines 21
·
Q and A. Crohn's Disease and Ulcerative Colitis: Pregnancy Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1999. 8 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: Crohn's disease and ulcerative colitis, known together as inflammatory bowel disease (IBD's), are primarily diseases of young people. This brochure is designed to answer questions about conception, pregnancy, delivery, and nursing for people with IBD. It discusses whether pregnancy can harm a woman with Crohn's disease or ulcerative colitis; whether IBD will affect pregnancy and delivery or cause harm to a fetus or newborn; whether IBD's ever begin during pregnancy; the safety and side effects of sulfasalazine, 5-ASA compounds (Dipentum, Asacol, and Pentasa), prednisone, and immunosuppressive drugs during pregnancy and nursing; diagnostic procedures and surgery during pregnancy; the effect of previous bowel surgery on pregnancy; and the chances that children of parents who have IBD's will themselves develop IBD.
·
Q and A. Crohn's Disease and Ulcerative Colitis: A Parent's Guide Source: New York, NY: Crohn's and Colitis Foundation of America. 1999. 20 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: This pamphlet, written for parents, answers questions about Crohn's disease and ulcerative colitis (together known as inflammatory bowel disease, or IBD) in children. Written in question-and-answer format, the brochure describes the causes, symptoms, and prevalence of IBD; diagnostic tests; inheritance of IBD; the role of surgery; eating habits and nutrition; and special foods and vitamins. The authors point out that children do not grown IBD but that many people enjoy long periods of remission. The common medications used to treat IBD are described in detail. The authors also discuss the emotional and social challenges sometimes presented by IBD's and give parents hints to help their children cope. A glossary of terms is appended.
22 Ulcerative Colitis
·
Q and A. About Ulcerative Colitis Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. (CCFA). 1999. 12 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: This brochure familiarizes readers with ulcerative colitis, an inflammatory disease of the colon that is characterized by inflammation and ulceration of the innermost lining of the colon. Written in a question and answer format, the brochure describes ulcerative colitis (UC) and covers the incidence of UC, the role of genetics, the symptoms of UC, diagnostic tests used to confirm the condition, medications used to treat UC, the role of surgery in treatment, the importance of nutrition, the role of emotional stress as a trigger for attacks of UC, considerations of everyday life with UC, and theories as to the causes of UC. The booklet concludes with a brief description of the activities of the Crohn's and Colitis Foundation of America (CCFA) and a glossary of terms related to IBD. 1 figure.
·
Q and A. Crohn's Disease and Ulcerative Colitis: Surgery Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1999. 12 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: About two-thirds to three-fourths of people with Crohn's disease, and about 25 to 40 percent of people with ulcerative colitis will need surgery at some time during their lives. This brochure is written in a question-and-answer format and clearly separates information about Crohn's disease from information about ulcerative colitis. Topics covered include indications for surgery; the role of nutrition in surgical patients with inflammatory bowel disease (Crohn's disease or ulcerative colitis); common surgical procedures; surgical treatment of abscesses and fistulas; recurrence of Crohn's disease following surgery; and selecting the best surgical option for ulcerative colitis.
Guidelines 23
·
Crohn's Disease or Ulcerative Colitis: How to Choose a Doctor and Hospital for Your Treatment Source: Cleveland, OH: Cleveland Clinic Foundation. 1998. 23 p. Contact: Available from Cleveland Clinic Foundation. Department of Nutrition Services, One Clinic Center, 9500 Euclid Avenue, Cleveland, OH 44195. (216) 444-8950. Price: Single copy free. Summary: Selecting a doctor and hospital for treatment of inflammatory bowel disease (IBD, including Crohn's disease and ulcerative colitis) involves making some difficult and important decisions. Patients must carefully consider where to go and what physicians and surgeons are the most qualified to treat IBD. This brochure offers information for patients with IBD, focusing on choosing a doctor and hospital for treatment. The brochure describes the difference between ulcerative colitis and Crohn's disease, how IBD is diagnosed, treatment options (including nonsurgical therapies and surgical procedures), and six points that indicate quality. The six points that patients should consider are credentials, experience, range of services, participation in research and education, patient satisfaction, and outcome indicators. In each area, the brochure offers suggested questions for patients to ask of their health care providers and facilities. Surgical options discussed include pelvic pouch surgery (which allows for nearly normal bowel movements), continent ileostomy (a conversion procedure for old style ileostomy patients to have their external pouch converted to an internal pouch), and strictureplasty (an option for some Crohn's patients, this relieves obstruction but preserves the intestine). The brochure also provides information about the Cleveland Clinic, the producer of the brochure and a nationally known clinic in the treatment of urologic, gynecologic, and colorectal disorders (www.ccf.org ).
·
Ulcerative Colitis. [Colitis Ulcerosa] Source: Camp Hill, PA: Chek-Med Systems, Inc. 1996. 2 p. Contact: Available from Chek-Med Systems, Inc. 200 Grandview Avenue, Camp Hill, PA 17011. (800) 451-5797. Fax (717) 761-0216. Price: $22 per pack of 50 pamphlets for order of 3-10 packs; 3 packet minimum. Discounts available for larger quantities and complete kits of gastroenterology pamphlets. Summary: This patient brochure, available in English and Spanish, provides information about ulcerative colitis, a chronic, recurring disease of the large bowel or colon, causing inflammation and ulcers or sores in the lining. While the cause of this disease is unknown, it is believed to be related to a defect in the body's immune system. Information is included
24 Ulcerative Colitis
on the symptoms, complications, diagnosis, and treatment of this disease, which usually begins in young people. Three types of medications that comprise the cornerstone of its treatment are discussed; these include cortisone or steroids, sulfasalazine derivatives, and immune system suppressors. Dietary and emotional factors associated with the management of this disease are outlined. If necessary, surgical removal of the colon may be indicated as a cure for the disease. Illustrations of this disorder are included. ·
New Surgical Options for the Treatment of Ulcerative Colitis: Questions and Answers Source: Arlington Heights, IL: American Society of Colon and Rectal Surgeons. 1996. [2 p.]. Contact: Available from American Society for Colon and Rectal Surgeons (ASCRS). 85 West Algonquin Road, Suite 550, Arlington Heights, IL 60005. (800) 791-0001 or (847) 290-9184. Website: www.fascrs.org. Price: Single copy free. Summary: This patient education brochure describes new surgical treatments for ulcerative colitis (UC), an inflammation of the lining of the large bowel (colon). Symptoms of UC include rectal bleeding, diarrhea, abdominal cramps, weight loss, and fever. In addition, patients who have had extensive UC for many years are at an increased risk to develop large bowel cancer. Initial treatment of UC is medical, using antibiotics and antiinflammatory medications. Surgery is indicated for patients who have life threatening complications of inflammatory bowel diseases, such as massive bleeding, perforation, or infection. It may also be necessary for those who have the chronic form of the disease, which fails medical therapy. Historically, the standard operation for UC has been removal of the entire colon, rectum, and anus; this procedure is called a proctocolectomy. This operation requires creation of a Brooke ileostomy and chronic use of an appliance on the abdominal wall to collect waste from the bowel. Another option is the continent ileostomy, in which an internal reservoir is created. The bowel still comes through the abdominal wall, but an external appliance is not required. This option eliminates the risks of cancer and risks of recurrent persistent colitis, but the internal reservoir may begin to leak and require another surgical procedure to revise the reservoir. Some patients may be treated by removal of the colon, with preservation of the rectum and anus. The small bowel can then be reconnected to the rectum and the person retains continence. This avoids the ileostomy, but the risks of ongoing active colitis, increased stool frequency, urgency, and cancer in the retained rectum remain. The brochure then describes the ileoanal procedure, a newer alternative for
Guidelines 25
the management of UC in which all of the colon and rectum are removed, but the anal canal is preserved. The rectum is replaced with a small bowel, which is fashioned to form a small pouch. The pouch acts as a reservoir to help decrease the stool frequency. This maintains a normal route of defecation, but most patients experience 5 to 10 bowel movements per day. The brochure concludes by encouraging readers to educate themselves about these alternatives, so that they can take part in the decisions about their own health care and pursue the highest quality of life. 8 figures. ·
Q and A. Crohn's Disease and Ulcerative Colitis: Diet and Nutrition Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1999. 8 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: Crohn's disease and ulcerative colitis are known together as inflammatory bowel disease (IBD). This brochure points out that there is no evidence that dietary factors cause or contribute to IBD, but that once IBD has developed, attention to diet may reduce symptoms and promote healing. Specific topics addressed include how IBD's interfere with digestion; how a low-fiber diet may be beneficial for those with Crohn's disease; the special importance of nutrition to IBD patients; milk and lactose; allergies; absorption; supplemental vitamins and minerals; the importance of adequate fluid intake; how nutrition affects growth; and recent developments in nutritional therapy.
·
Q and A. Crohn's Disease and Ulcerative Colitis: Complications Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1999. 8 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: Written in a question-and-answer format, this patient education brochure reviews general complications associated with inflammatory bowel disease (IBD). The brochure contains information about how often complications occur; the important local complications of ulcerative colitis; systemic complications of inflammatory bowel disease; extraintestinal manifestations; liver involvement in IBD; arthritis
26 Ulcerative Colitis
and other inflammation of the joints; how Crohn's disease or ileitis differs from ulcerative colitis; fistulas; malnutrition; intestinal complications of Crohn's disease; obstruction and its treatment, including surgery; complications in children and adolescents; and the relationship between cancer and IBD. The brochure concludes with a brief description of the purpose and activities of the Crohn's and Colitis Foundation of America (CCFA). ·
Q and A. Crohn's Disease and Ulcerative Colitis: Medications Source: New York, NY: Crohn's and Colitis Foundation of America. 1999. 20 p. Contact: Available from Crohn's and Colitis Foundation of America (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 932-2423. E-mail:
[email protected]. Website: www.ccfa.org. Price: Single copy free. Summary: This brochure answers commonly asked questions about the medications used to treat ulcerative colitis and Crohn's disease, two conditions that are collectively called inflammatory bowel disease (IBD). The goals of medical treatment are to suppress the inflammatory response to permit healing of tissue, to improve quality of life, to maintain adequate nutritional status, and to relieve the symptoms of fever, diarrhea, and abdominal pain. Several groups of drugs are used: aminosalicylates, corticosteroids, immune modifiers, and antibiotics. In general, aminosalicylate pills, enemas, and suppositories remain the first line of therapy for people with active IBD, as well as for maintaining remission. Oral aminosalicylates may also prevent Crohn's from recurring after surgery. Oral corticosteroids are usually reserved for individuals who fail to respond to aminosalicylates or who require rapid control of symptoms. Antibiotics may be beneficial in certain clinical situations. Infliximab (a biologic therapy) is appropriate for those with Crohn's disease who fail to respond to conventional medical therapy or who have fistulas. A final section considers the medical treatment for children and adolescents with IBD. All of the medications used for adults are also used for children, and the indications and contraindications are similar. Individualized treatment is required, however, as dosages must be tailored for children, who are of smaller size, and adolescents, who are moving through a period of both physical and psychosocial growth and development.
·
Ulcerative Colitis: Understanding This Chronic Illness Source: San Bruno, CA: StayWell Company. 1998. [2 p.].
Guidelines 27
Contact: Available from StayWell Company. Order Department, 1100 Grundy Lane, San Bruno, CA 94066-9821. (800) 333-3032. Fax (650) 2444512. Price: $ 17.95 for 50 copies; plus shipping and handling; bulk copies available. Order number 9784. Summary: This brochure describes ulcerative colitis (UC), a type of inflammatory bowel disease (IBD). The symptoms of UC can include frequent, loose bowel movements; blood and pus in stools; rectal bleeding; feeling of incomplete bowel movement; urgency; severe straining with bowel movement; joint pain; and rectal pain that comes and goes. Diagnostic tests that may be used to confirm UC include endoscopy, biopsy, blood or stool tests, and xrays of the colon. The brochure reviews treatment options, including medications, dietary strategies, and surgery. One sidebar reviews the anatomy of the digestive tract and how UC can impact the digestive tract. UC is inflammation (irritation and swelling) that occurs in the rectum. It can also affect the colon, but affects only the inside layers of tissue lining the rectum and colon. The brochure concludes by encouraging readers to work closely with their health care providers and to seek out support groups to talk with others who are dealing with IBD. The toll free telephone number of the Crohn's and Colitis Foundation (800-932-2423) is provided. The brochure is illustrated with full color drawings. 6 figures. ·
Common Gastrointestinal Problems: A Consumer Health Guide. Volume II Source: Arlington, VA: American College of Gastroenterology. 1996. 23 p. Contact: Available from American College of Gastroenterology. 4900B South 31st Street, Arlington, VA 22206. (703) 820-7400. Price: Single copy free. Summary: This brochure provides an overview of common gastrointestinal problems, including constipation, gallstones, hemochromatosis, inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), viral liver disease, and alcoholic liver disease. Each topic is addressed by a specialist in the field and the information is provided in a question and answer format. The section on constipation covers normal digestive function, normal bowel habits, a definition of constipation, how to know when to consult a health care provider, diagnostic tests that may be performed, treatment options, and dietary fiber. The section on gallstones describes the gallbladder and its functions, how gallstones are formed, risk factors for developing gallstones, the symptoms of gallstones, diagnostic tests used to confirm gallstones, treatment options, and prevention. The section on hemochromatosis describes the condition and its symptoms, diagnostic tests, treatment options, how
28 Ulcerative Colitis
hemochromatosis can be confused with other liver diseases, and the indications for screening of family members. The chapter on IBD covers the difference between ulcerative colitis and Crohn's disease, how IBD differs from IBS, the causes of IBD, how stress affects IBD, diagnostic tests, complications of IBD, medication treatments available, complications from medical treatment, diet therapy for patients with IBD, and surgical options for IBD. The section on IBS focuses on recommended treatment strategies, including consulting a health care provider, reducing stress, watching dietary intake, and using medications. The section on viral liver disease describes the liver and its function, a definition of hepatitis and its symptoms, the different viruses and how they are transmitted, prevention issues, treatment options, and the longterm consequences of hepatitis. The final section, on alcoholic liver disease, covers the impact of alcohol consumption on the liver, gender differences in alcoholic liver disease, fatty liver, alcoholic hepatitis, alcohol-induced cirrhosis, differentially diagnosis, complications of alcoholic liver disease, and treatment options. 3 figures. 1 table. (AA-M). The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “ulcerative colitis” or synonyms. The following was recently posted: ·
Practice parameters for treatment of mucosal ulcerative colitis. Source: American Society of Colon and Rectal Surgeons.; 1997 (reaffirmed 1998-1999); 13 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1359&sSearch_string=ulcerative+colitis
Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database:
Guidelines 29
·
Ulcerative Colitis Summary: In ulcerative colitis, the inner lining of the large intestine (colon or bowel) and rectum becomes inflamed. Source: National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=734
The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to ulcerative colitis. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.
PEDBASE Similar to NORD, PEDBASE covers relatively rare disorders, limited mainly to pediatric conditions. PEDBASE was designed by Dr. Alan Gandy. To access the database, which is more oriented to researchers than patients, you can view the current list of conditions covered at the following Web site: http://www.icondata.com/health/pedbase/pedlynx.htm. Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats
·
drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html
30 Ulcerative Colitis
·
Family Village: http://www.familyvillage.wisc.edu/specific.htm
·
Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/
·
Med Help International: http://www.medhelp.org/HealthTopics/A.html
·
Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/
·
Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/
·
WebMDÒHealth: http://my.webmd.com/health_topics
Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Acne: An inflammatory disease of the pilosebaceous unit, the specific type usually being indicated by a modifying term; frequently used alone to designate common acne, or acne vulgaris. [EU] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Anastomosis: An opening created by surgical, traumatic or pathological means between two normally separate spaces or organs. [EU] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Anus: The distal or terminal orifice of the alimentary canal. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU]
Guidelines 31
Barium: An element of the alkaline earth group of metals. It has an atomic symbol Ba, atomic number 56, and atomic weight 138. All of its acid-soluble salts are poisonous. [NIH] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Budesonide: A glucocorticoid used in the management of asthma, the treatment of various skin disorders, and allergic rhinitis. [NIH] Cholangitis: Inflammation of a bile duct. [EU] Chronic: Persisting over a long period of time. [EU] Cirrhosis: Liver disease characterized pathologically by loss of the normal microscopic lobular architecture, with fibrosis and nodular regeneration. The term is sometimes used to refer to chronic interstitial inflammation of any organ. [EU] Colitis: Inflammation of the colon. [EU] Colonoscopy: Endoscopic examination, therapy or surgery of the luminal surface of the colon. [NIH] Colorectal: Pertaining to or affecting the colon and rectum. [EU] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Defecation: The normal process of elimination of fecal material from the rectum. [NIH] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Digestion: The process of breakdown of food for metabolism and use by the body. [NIH] Duodenum: The first or proximal portion of the small intestine, extending from the pylorus to the jejunum; so called because it is about 12 fingerbreadths in length. [EU] Dysplasia: Abnormality of development; in pathology, alteration in size, shape, and organization of adult cells. [EU] Endocrinology: A subspecialty of internal medicine concerned with the metabolism, physiology, and disorders of the endocrine system. [NIH] Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU] Enema: A clyster or injection; a liquid injected or to be injected into the rectum. [EU]
32 Ulcerative Colitis
Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Fistula: An abnormal passage or communication, usually between two internal organs, or leading from an internal organ to the surface of the body; frequently designated according to the organs or parts with which it communicates, as anovaginal, brochocutaneous, hepatopleural, pulmonoperitoneal, rectovaginal, urethrovaginal, and the like. Such passages are frequently created experimentally for the purpose of obtaining body secretions for physiologic study. [EU] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Heartburn: Substernal pain or burning sensation, usually associated with regurgitation of gastric juice into the esophagus. [NIH] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Heparin: Heparinic acid. A highly acidic mucopolysaccharide formed of equal parts of sulfated D-glucosamine and D-glucuronic acid with sulfaminic bridges. The molecular weight ranges from six to twenty thousand. Heparin occurs in and is obtained from liver, lung, mast cells, etc., of vertebrates. Its function is unknown, but it is used to prevent blood clotting in vivo and vitro, in the form of many different salts. [NIH] Hepatitis: Inflammation of the liver. [EU] Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU] Hydrocortisone: The main glucocorticoid secreted by the adrenal cortex. Its synthetic counterpart is used, either as an injection or topically, in the treatment of inflammation, allergy, collagen diseases, asthma, adrenocortical deficiency, shock, and some neoplastic conditions. [NIH] Hypertension: Persistently high arterial blood pressure. Various criteria for its threshold have been suggested, ranging from 140 mm. Hg systolic and 90 mm. Hg diastolic to as high as 200 mm. Hg systolic and 110 mm. Hg diastolic. Hypertension may have no known cause (essential or idiopathic h.) or be associated with other primary diseases (secondary h.). [EU] Ileitis: Inflammation of the ileum. [EU] Ileostomy: Surgical creation of an external opening into the ileum for fecal diversion or drainage. Loop or tube procedures are most often employed. [NIH]
Inflammation: A pathological process characterized by injury or destruction
Guidelines 33
of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Intestinal: Pertaining to the intestine. [EU] Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Nicotine: Nicotine is highly toxic alkaloid. It is the prototypical agonist at nicotinic cholinergic receptors where it dramatically stimulates neurons and ultimately blocks synaptic transmission. Nicotine is also important medically because of its presence in tobacco smoke. [NIH] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Pelvic: Pertaining to the pelvis. [EU] Perforation: 1. the act of boring or piercing through a part. 2. a hole made through a part or substance. [EU] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH]
Prevalence: The number of people in a given group or population who are reported to have a disease. [NIH] Proctitis: Inflammation of the rectum. [EU] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Rectal: Pertaining to the rectum (= distal portion of the large intestine). [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the
34 Ulcerative Colitis
abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Sulfapyridine: Antibacterial, potentially toxic, used to treat certain skin diseases. [NIH] Suppository: A medicated mass adapted for introduction into the rectal, vaginal, or urethral orifice of the body, suppository bases are solid at room temperature but melt or dissolve at body temperature. Commonly used bases are cocoa butter, glycerinated gelatin, hydrogenated vegetable oils, polyethylene glycols of various molecular weights, and fatty acid esters of polyethylene glycol. [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Toxicology: The science concerned with the detection, chemical composition, and pharmacologic action of toxic substances or poisons and the treatment and prevention of toxic manifestations. [NIH] Ulceration: 1. the formation or development of an ulcer. 2. an ulcer. [EU] Urology: A surgical specialty concerned with the study, diagnosis, and treatment of diseases of the urinary tract in both sexes and the genital tract in the male. It includes the specialty of andrology which addresses both male genital diseases and male infertility. [NIH] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH]
Clinical Trials 35
CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with ulcerative colitis. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.8 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with ulcerative colitis. The chapter ends with a discussion on how to find a doctor that is right for you.
Associations and Ulcerative Colitis As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.9 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 9 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 8
36 Ulcerative Colitis
influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·
American Autoimmune Related Diseases Association, Inc Address: American Autoimmune Related Diseases Association, Inc. Michigan National Bank Building, 15475 Gratiot Avenue, Detroit, MI 48205 Telephone: (313) 371-8600 Toll-free: (800) 598- 4668 Fax: (313) 371-6002 Email:
[email protected] Web Site: http://www.aarda.org Background: The American Autoimmune Related Diseases Association, Inc. (AARDA) is a national not-for-profit voluntary health agency dedicated to bringing a national focus to autoimmunity, a major cause of serious chronic diseases. The Association was founded for the purposes of supporting research to find a cure for autoimmune diseases and providing services to affected individuals. In addition, the Association's goals include increasing the public's awareness that autoimmunity is the cause of more than 80 serious chronic diseases; bringing national focus and collaborative effort among state and national voluntary health groups that represent autoimmune diseases; and serving as a national advocate for individuals and families affected by the physical, emotional, and financial effects of autoimmune disease. The American Autoimmune Related Diseases Association produces educational and support materials including fact sheets, brochures, pamphlets, and a newsletter entitled 'In Focus.'.
·
American Society of Colon and Rectal Surgeons Address: American Society of Colon and Rectal Surgeons 85 West Algonquin Road, Suite 550, Arlington Heights, IL 60005 Telephone: (847) 290-9184 Toll-free: (800) 387-1479 Fax: (847) 290-9203
Clinical Trials 37
Email:
[email protected] Web Site: http://www.fascrs.org Background: The American Society of Colon and Rectal Surgeons (ASCRS) is a medical professional society representing more than 1,000 board certified colon and rectal surgeons and other surgeons. The Society's membership is dedicated to advancing and promoting the science and practice of the treatment of individuals with diseases and disorders affecting the colon, rectum, and anus. The Society's Standards Task Force is committed to developing practice parameters for the treatment of colon and rectal diseases and disorders including ambulatory anorectal surgery, treatment of hemorrhoids, management of anal fissure, treatment of rectal carcinoma, and detection of colorectal neoplasms. The Society's web site provides links to such practice parameters as well as to core subject updates on such topics as colonic volvulus, ostomies and stomal therapy, familial adenomatous polyposis, and colon and rectal cancer. The Society also publishes the 'Washington Report,' which offers updates on current federal legislative and regulatory actions, and provides professional publications including the 'ASCRS Newsletter' and the Society's official journal entitled 'Diseases of the Colon and Rectum.' The ASCRS also provides an email discussion group (listserv) for the benefit of ASCRS members and fellows in colon and rectal surgery. The primary purpose of the listserv is to provide a forum for the informal discussion of clinical cases and other issues of general interest to the colon and rectal surgeon community. The Society's web site also provides information on the Collaborative Group of the Americas on Inherited Colorectal Cancer. The Group was established in 1995 to improve understanding of the basic science of inherited colorectal cancer and the clinical management of affected families. Its broad aims are to promote education of physicians, allied health care professionals, patients, and their families; provide linkage to clinical and chemoprevention trials; promote the integration of molecular and clinical research at local and national levels; and serve as a resource for developing similar genetic registers. The American Society of Colon and Rectal Surgeons also provides patient information on a variety of topics including anal abscess/fistula, anal fissure, anal warts, bowel incontinence, colonoscopy, colorectal cancer, constipation, Crohn's disease, diverticular disease, irritable bowel syndrome, ostomy, rectal prolapse, and ulcerative colitis. ·
Crohn's and Colitis Foundation of America Address: Crohn's and Colitis Foundation of America 386 Park Avenue South, 17th Floor, New York, NY 10016-9804
38 Ulcerative Colitis
Telephone: (212) 685-3440 Toll-free: (800) 932-2423 Fax: (212) 779-4098 Email:
[email protected] Web Site: http://www.ccfa.or Background: The Crohn's and Colitis Foundation of America is a not-forprofit voluntary health organization dedicated to raising funds for research to determine the cause of and the cure for Crohn's Disease and colitis. Crohn's Disease and ulcerative colitis, collectively known as inflammatory bowel disease, are chronic digestive diseases of unknown cause. While Crohn's Disease may affect any part of the gastrointestinal tract and often results in swelling, soreness, and inflammation of layers of the large and/or small intestinal wall, Ul ulcerative colitis affects only the colon (large intestine), causing inflammation of the inner lining and resulting in diarrhea, often mixed with blood, cramping abdominal pain, and other symptoms. Established in 1967, the Crohn's and Colitis Foundation of America seeks to educate affected individuals, physicians, and the public about these disorders in order to increase awareness about the nature of these chronic disorders and help affected individuals confront their unique problems. In addition, the Foundation establishes support groups, engages in patient advocacy, plays an active role in government legislation, and provides medical referrals. Educational materials produced by the organization include a regular newsletter, reports, and informative brochures. ·
Crohn's and Colitis Foundation of Canada Address: Crohn's and Colitis Foundation of Canada 21 St. Clair Avenue East, Suite 301, Toronto, Ontario, M4T 1L9, Canada Telephone: (416) 920-5035 Toll-free: (800) 387-1479 Fax: (416) 929-0364 Email:
[email protected] Web Site: http://www.ccfc.c Background: The Crohn's and Colitis Foundation of Canada (CCFC) is a not-for- profit voluntary health organization dedicated to raising funds for research to determine the cause of and the cure for Crohn's disease and colitis. Crohn's disease and ulcerative colitis, known as inflammatory bowel diseases, are chronic digestive disorders of unknown cause. Crohn's disease may affect any part of the digestive tract and often results in swelling, soreness, and inflammation of layers of the large and/or small intestinal wall. Ulcerative colitis affects the colon (large intestine), causing inflammation of the inner lining and resulting in
Clinical Trials 39
diarrhea, often mixed with blood, cramping abdominal pain, and other symptoms. Established in 1974, CCFC's mission is to help find the cure for Crohn's disease and ulcerative colitis. The Foundation provides educational programs for affected individuals, their families, health professionals, and the general public. In addition, the Foundation provides educational and awareness initiatives through approximately 75 local CCFC volunteer groups and CCFC community education events, featuring leading IBD specialists. The Foundation publishes a brochure series in both French and English. Titles include 'Surgery and Inflammatory Bowel Disease,' 'Nutrition, Diet and Inflammatory Bowel Disease,' 'Medication for Inflammatory Bowel Disease,' 'Sexuality, Fertility, Pregnancy and Inflammatory Bowel Disease,' and 'Living with Inflammatory Bowel Disease.' 'The Journal,' a regularly published newsletter, is also available. CCFC maintains a site on the World Wide Web at http://www.ccfc.ca. ·
David G. Jagelman Inherited Colorectal Cancer Registries Address: David G. Jagelman Inherited Colorectal Cancer Registries Cleveland Clinic Foundation, T10-Medical Genetics, 9500 Euclid Avenue, Cleveland, OH 44195 Telephone: (216) 444-6470 Toll-free: (800) 998-4785 Fax: (216) 445-6935 Email:
[email protected] Background: Established in 1978, the David G. Jagelman Inherited Colorectal Cancer Registries is a not-for-profit academic medical center recognized as a National Referral Center and an international resource for diseases of the colon and rectum. Dedicated to identifying, educating, and serving affected individuals, the organization has an educational division, a research institute, and a hospital and outpatient clinic. The organization offers risk assessments and appropriate screening tests; maintains computerized registries of affected individuals and those who may be at risk (e.g., for Familial Adenomatous Polyposis, Hereditary Nonpolyposis Colorectal Cancer, and Familial Colon Cancer). It suggests surveillance protocols and reviews surgical options for affected individuals. David G. Jagelman Inherited Colorectal Cancer Registries also provides a variety of educational and support materials including brochures, pamphlets, articles, and a newsletter called 'Family Matters.'. Relevant area(s) of interest: Ulcerative Colitis
40 Ulcerative Colitis
·
Intestinal Disease Foundation Address: Intestinal Disease Foundation 1323 Forbes Avenue, Suite 200, Pittsburgh, PA 15219 Telephone: (412) 261-5888 Toll-free: (800) 932-2423 Fax: (412) 471-272 Background: The Intestinal Disease Foundation (IDF) is an international not- for-profit organization dedicated to providing information, assistance, and mutual support to individuals with chronic intestinal illnesses including irritable bowel syndrome, diverticular disease, ulcerative colitis, Crohn's disease, and short-bowel syndrome. Established in 1986 and consisting of 1,400 members in the United States and abroad, IDF promotes healing by encouraging individuals to assume an active role in their own treatment through a positive mental attitude founded on shared experiences. This is facilitated by a telephone network of individuals with intestinal illnesses who provide support, encouragement, and information. The Foundation publishes a quarterly newsletter entitled 'Intestinal Fortitude' as well as a variety of informational brochures and educational materials on chronic intestinal diseases and conditions. Relevant area(s) of interest: Diarrhea, Diverticular Disease, Irritable Bowel Syndrome, Lactose Intolerance, Proctitis, Short Bowel Syndrome
·
National Association for Colitis and Crohn's Disease (UK) Address: National Association for Colitis and Crohn's Disease (UK) 4 Beaumont House, Sutton Road, St. Albans, Herts., AL1 5HH, United Kingdom Telephone: 44(0) 1727 844296 Toll-free: (800) 932-2423 Fax: 44(0) 1727 862550 Email:
[email protected] Web Site: http://www.nacc.org.uk Background: The National Association for Colitis and Crohn's Disease (UK) is a national voluntary association in the United Kingdom dedicated to providing information and support services to people who are living with ulcerative colitis or Crohn's disease, which are both forms of inflammatory bowel disease (IBD). The Association is also committed to promoting and supporting research into the medical, health care, social, and psychological aspects of IBD. Ulcerative colitis is characterized by chronic inflammation and ulceration of the large intestine and the rectum. Affected individuals may experience associated pain; episodes of
Clinical Trials 41
urgent, bloody diarrhea; fatigue; and other symptoms. Crohn's disease may affect any area of the gastrointestinal tract from the mouth to the rectum; however, in most cases, it is characterized by chronic inflammation, ulceration, and scarring of the wall of the small intestine. Associated symptoms and findings may include pain, fatigue, weight loss, episodes of urgent diarrhea, and other symptoms and findings. The National Association for Colitis and Crohn's Disease (UK) was established in 1979 and currently consists of over 27,000 members including affected individuals, their families and friends, health care professionals, and anyone who wishes to support the group's activities. The Association conducts regular meetings; offers local support through its area groups; has a network of trained volunteer counselors who provide telephone support; and offers information and support to families with children affected by IBD through its 'Smilie's People Network.' In addition, the Association has a fund for people in financial difficulty due to IBD and supports local hospitals through its area groups. The National Association for Colitis and Crohn's Disease (UK) also offers brochures, publishes a quarterly newsletter, and has a web site on the Internet. ·
Pediatric Crohn's and Colitis Association, Inc Address: Pediatric Crohn's and Colitis Association, Inc. P.O. Box 188, Newton, MA 02468 Telephone: (617) 489-5854 Toll-free: (800) 932-2423 Fax: (617) 489-5854 Email:
[email protected] Web Site: http://pcca.hypermart.ne Background: The Pediatric Crohn's and Colitis Association, Inc. (PCCA) is an international not-for-profit service organization dedicated to providing information and emotional support to families of children with inflammatory bowel disease (IBD) to help ensure that affected children reach their potential in today's society. Crohn's Disease and Ulcerative Colitis, collectively known as Inflammatory Bowel Disease, are chronic digestive diseases of unknown cause. While Crohn's Disease may affect any part of the gastrointestinal tract and often results in swelling, soreness, and inflammation of layers of the large and/or small intestinal wall, Ulcerative Colitis affects only the colon (large intestine), causing inflammation of the inner lining and resulting in diarrhea, often mixed with blood, cramping abdominal pain, and other symptoms. The Association was founded in 1988 by a group of parents with children affected by IBD to address the broad range of issues faced by the
42 Ulcerative Colitis
pediatric population with these disorders. Currently consisting of over 1,200 members, PCCA is dedicated to promoting pediatric research; providing educational, emotional, social, academic, and psychological support; and addressing the role of family dynamics in dealing with a chronic illness. The organization's services include a parent hotline; support groups; patient advocacy; networking services; and medical, educational, and psychological symposia. The organization also provides a variety of educational materials including brochures, pamphlets, an information packet, and a regular newsletter. Relevant area(s) of interest: Idiopathic Non-Specific Ulcerative Colitis, Idiopathic Proctocolitis, Ulcerative Colitis ·
Reach Out for Youth with Ileitis and Colitis, Inc Address: Reach Out for Youth with Ileitis and Colitis, Inc. 84 Northgate Circle, Melville, NY 11747 Telephone: (516) 293-3102 Toll-free: (800) 932-2423 Fax: (516) 293-3103 Email:
[email protected] Web Site: Non Background: Reach Out for Youth with Ileitis and Colitis, Inc. is a nonprofit support organization dedicated to assisting families whose children have Inflammatory Bowel Disease (IBD) such as Ileitis or Colitis. Ulcerative Colitis is an inflammatory disease of the large intestine and is characterized by diarrhea, abdominal pain, fever, and bleeding from the rectum. Decreased appetite and weight loss may also occur. Ileitis or Crohn's Disease, also an inflammatory bowel disorder, can affect any portion of the digestive system and has symptoms that are similar to those of Colitis. Established in 1979 and consisting of approximately 400 members, the organization has helped hundreds of families cope with the effects of IBD. The group's goals include providing educational materials and emotional support to affected individuals and their families and organizing fundraising efforts to promote research into the causes and treatment of IBD. Educational seminars and a quarterly newsletter entitled 'Inner Circle' assist members by keeping them informed of current activities. A hotline offers interested individuals the opportunity to communicate on a one-to-one basis, especially when acute symptoms are present. Reach Out also continues to support the IBD clinical database established 13 years ago as a crucial research tool.
Clinical Trials 43
Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations.
The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about ulcerative colitis. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.
DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “ulcerative colitis” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “ulcerative colitis”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “ulcerative colitis” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with ulcerative colitis. You should check back periodically with this database since it is updated every 3 months.
44 Ulcerative Colitis
The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “ulcerative colitis” (or a synonym) in the search box.
Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.
Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with ulcerative colitis must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:10 ·
If you are in a managed care plan, check the plan’s list of doctors first.
·
Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
·
Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.
10
This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
Clinical Trials 45
·
Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.
Additional steps you can take to locate doctors include the following: ·
Check with the associations listed earlier in this chapter.
·
Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.
·
The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at http://www.abms.org/newsearch.asp.11 You can also contact the ABMS by phone at 1-866-ASK-ABMS.
·
You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.
If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 11
46 Ulcerative Colitis
Selecting Your Doctor12 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·
Give me a chance to ask questions about ulcerative colitis?
·
Really listen to my questions?
·
Answer in terms I understood?
·
Show respect for me?
·
Ask me questions?
·
Make me feel comfortable?
·
Address the health problem(s) I came with?
·
Ask me my preferences about different kinds of treatments for ulcerative colitis?
·
Spend enough time with me?
Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.
Working with Your Doctor13 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·
You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.
·
It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.
12 This
section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 13 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
Clinical Trials 47
·
Bring a “health history” list with you (and keep it up to date).
·
Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.
·
Tell your doctor about any natural or alternative medicines you are taking.
·
Bring other medical information, such as x-ray films, test results, and medical records.
·
Ask questions. If you don’t, your doctor will assume that you understood everything that was said.
·
Write down your questions before your visit. List the most important ones first to make sure that they are addressed.
·
Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.
·
Ask your doctor to draw pictures if you think that this would help you understand.
·
Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.
·
Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.
·
Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.
·
After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.
By following these steps, you will enhance the relationship you will have with your physician.
48 Ulcerative Colitis
Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:14 ·
Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html
·
Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html
·
Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html
Vocabulary Builder Anorectal: Pertaining to the anus and rectum or to the junction region between the two. [EU] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Carcinoma: A malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and give rise to metastases. [EU] Fissure: Any cleft or groove, normal or otherwise; especially a deep fold in the cerebral cortex which involves the entire thickness of the brain wall. [EU] Hemorrhoids: Varicosities of the hemorrhoidal venous plexuses. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Neoplasms: New abnormal growth of tissue. Malignant neoplasms show a greater degree of anaplasia and have the properties of invasion and metastasis, compared to benign neoplasms. [NIH] Prolapse: 1. the falling down, or sinking, of a part or viscus; procidentia. 2. to undergo such displacement. [EU]
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
14
Clinical Trials 49
CHAPTER 3. CLINICAL TRIALS AND ULCERATIVE COLITIS Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning ulcerative colitis.
What Is a Clinical Trial?15 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for ulcerative colitis is to try it on patients in a clinical trial.
The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.
15
50 Ulcerative Colitis
What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·
Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.
·
Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on ulcerative colitis.
·
Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for ulcerative colitis compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment.
How Is a Clinical Trial Conducted? Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on ulcerative colitis carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on ulcerative colitis. In other clinical trials, where a new surgery or device (not a medicine) is
Clinical Trials 51
being tested, patients in the control group may receive a “sham treatment.” This treatment, like a placebo, has no effect on ulcerative colitis and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how ulcerative colitis develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for ulcerative colitis. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial’s investigators and provide details about your diagnosis and medical history.
52 Ulcerative Colitis
If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.
Recent Trials on Ulcerative Colitis The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to ulcerative colitis.16 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·
Immune Regulation in Ulcerative Colitis or Crohn's Disease Condition(s): Crohn's Disease; Inflammatory Bowel Disease; Ulcerative Colitis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: This study will investigate in patients with Crohn's disease and ulcerative colitis how the body's immune system controls inflammation in the gastrointestinal tract (stomach and intestines)specifically, how lymphocytes (a type of white blood cell) function in inflammatory responses. This protocol does not involve any experimental treatments. Study Type: Observational Contact(s): Maryland
16
These are listed at www.ClinicalTrials.gov.
Clinical Trials 53
National Institute of Allergy and Infectious Diseases (NIAID), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected] Web Site: http://www.clinicaltrials.gov/ct/gui/show/NCT00001184;jsessionid=3 2E980E305B6E1C00815605214520234?order=1 ·
Study of Infliximab for the treatment of patients with active Ulcerative Colitis Condition: Ulcerative Colitis Study Status: This study is currently recruiting patients. Sponsor(s): Centocor Purpose - Excerpt: A research study to evaluate the safety and effectiveness of an investigational drug is currently being conducted in adults with moderate to severe ulcerative colitis. The aim of the international study is to evaluate the efficacy and safety of Infliximab in patients with active ulcerative colitis. The study is being conducted in the US, Canada, Denmark, Spain, UK, Belgium and Germany. Contact(s): Minnesota Mayo Clinic, Rochester, Minnesota, 55905, United States; Recruiting William J Sandborn, MD, Principal Investigator Belgium, Academisch Ziekenhuis Gasthuisberg, Leuven, B-3000, Belgium; Recruiting Paul Rutgeerts, MD, Principal Investigator Web Site: http://www.clinicaltrials.gov/ct/gui/show/NCT00036439;jsessionid=3 2E980E305B6E1C00815605214520234
54 Ulcerative Colitis
Benefits and Risks17 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·
A new treatment could be more effective than the current treatment for ulcerative colitis. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.
·
If the treatment is effective, then it may improve health or prevent diseases or disorders.
·
Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.
·
People who take part in trials contribute to scientific discoveries that may help other people with ulcerative colitis. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent
Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you, and your rights as a patient.
What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f291. 17
Clinical Trials 55
How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient’s Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·
Information on all known risks and benefits of the treatments in the study.
·
Know how the researchers plan to carry out the study, for how long, and where.
·
Know what is expected of you.
·
Know any costs involved for you or your insurance provider.
·
Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.
·
Talk openly with doctors and ask any questions.
After you join a clinical trial, you have the right to: ·
Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.
·
Receive any new information about the new treatment.
·
Continue to ask questions and get answers.
·
Maintain your privacy. Your name will not appear in any reports based on the study.
56 Ulcerative Colitis
·
Know whether you participated in the treatment group or the control group (once the study has been completed).
What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don’t have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·
What is the purpose of the clinical trial?
·
What are the standard treatments for ulcerative colitis? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?
·
What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?
·
How long will the treatment last? How often will I have to come back for follow-up exams?
·
What are the treatment’s possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?
·
Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?
·
How will my health be monitored?
·
Where will I need to go for the clinical trial? How will I get there?
·
How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?
·
Will I be able to see my own doctor? Who will be in charge of my care?
Clinical Trials 57
·
Will taking part in the study affect my daily life? Do I have time to participate?
·
How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?
Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “ulcerative colitis” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·
For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/
·
For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html
·
For trials on diseases of the digestive system and kidneys, and diabetes, visit the National Institute of Diabetes and Digestive and Kidney Diseases: http://www.niddk.nih.gov/patient/patient.htm
58 Ulcerative Colitis
General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna
·
A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna
·
The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna
·
The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna
·
Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna
·
Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna
·
Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna
Clinical Trials 59
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Achlorhydria: A lack of hydrochloric acid in gastric juice despite stimulation of gastric secretion. [NIH] Antihistamine: A drug that counteracts the action of histamine. The antihistamines are of two types. The conventional ones, as those used in allergies, block the H1 histamine receptors, whereas the others block the H2 receptors. Called also antihistaminic. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Doxorubicin: Antineoplastic antibiotic obtained from Streptomyces peucetics. It is a hydroxy derivative of daunorubicin and is used in treatment of both leukemia and solid tumors. [NIH] Fluorouracil: A pyrimidine analog that acts as an antineoplastic antimetabolite and also has immunosuppressant. It interferes with DNA synthesis by blocking the thymidylate synthetase conversion of deoxyuridylic acid to thymidylic acid. [NIH] Glucagonoma: Glucagon-secreting tumor of the pancreatic alpha cells characterized by a distinctive rash, weight loss, stomatitis, glossitis, diabetes, hypoaminoacidemia, and normochromic normocytic anemia. [NIH] Hypersecretion: Excessive secretion. [EU] Inoperable: Not suitable to be operated upon. [EU] Localization: 1. the determination of the site or place of any process or lesion. 2. restriction to a circumscribed or limited area. 3. prelocalization. [EU] Metastasis: 1. the transfer of disease from one organ or part to another not directly connected with it. It may be due either to the transfer of pathogenic microorganisms (e.g., tubercle bacilli) or to transfer of cells, as in malignant tumours. The capacity to metastasize is a characteristic of all malignant tumours. 2. Pl. metastases. A growth of pathogenic microorganisms or of abnormal cells distant from the site primarily involved by the morbid process. [EU] Pancreas: An organ behind the lower part of the stomach that is about the size of a hand. It makes insulin so that the body can use glucose (sugar) for energy. It also makes enzymes that help the body digest food. Spread all over the pancreas are areas called the islets of Langerhans. The cells in these areas each have a special purpose. The alpha cells make glucagon, which
60 Ulcerative Colitis
raises the level of glucose in the blood; the beta cells make insulin; the delta cells make somatostatin. There are also the PP cells and the D1 cells, about which little is known. [NIH] Polypeptide: A peptide which on hydrolysis yields more than two amino acids; called tripeptides, tetrapeptides, etc. according to the number of amino acids contained. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Thalidomide: A pharmaceutical agent originally introduced as a nonbarbiturate hypnotic, but withdrawn from the market because of its known tetratogenic effects. It has been reintroduced and used for a number of immunological and inflammatory disorders. Thalidomide displays immunosuppresive and anti-angiogenic activity. It inhibits release of tumor necrosis factor alpha from monocytes, and modulates other cytokine action. [NIH]
61
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
ABOUT PART II In Part II, we introduce you to additional resources and advanced research on ulcerative colitis. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on ulcerative colitis. In Part II, as in Part I, our objective is not to interpret the latest advances on ulcerative colitis or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with ulcerative colitis is suggested.
Studies 63
CHAPTER 4. STUDIES ON ULCERATIVE COLITIS Overview Every year, academic studies are published on ulcerative colitis or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on ulcerative colitis. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on ulcerative colitis and teach you how to keep current on new studies as they are published or undertaken by the scientific community.
The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and ulcerative colitis, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the
64 Ulcerative Colitis
format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “ulcerative colitis” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·
Dermatologic Manifestations of Gastrointestinal Disorders Source: Gastroenterology Clinics of North America. 27(3): 615-636. September 1998. Summary: This journal article provides health professionals with information on the dermatologic manifestations of gastrointestinal disorders. Many disorders of the gastrointestinal tract have cutaneous manifestations, so a careful examination of the skin may reveal clues to underlying diseases of the liver, gastrointestinal tract, and pancreas. Hepatitis A virus infection rarely causes cutaneous involvement. Jaundice is the main cutaneous manifestation in more fulminant cases of this infection. Hepatitis B virus infection may produce vasculitic and nonvasculitic cutaneous eruptions. Hepatitis C infection may produce cutaneous eruptions such as lichen planus and porphyria cutanea tarda. Cutaneous symptoms associated with cholestatic liver disease include pruritus and pigmentary changes such as jaundice and hypermelanosis. Liver dysfunction may result in vascular lesions such as spider angiomas and alterations in the normal appearance of the fingernails and toenails. Many conditions are characterized by gastrointestinal hemorrhage. Hereditary hemorrhagic telangiectasia is an autosomal dominant disorder characterized by vascular dilations of the skin and the oral, nasal, and gastrointestinal mucosa. Various skin lesions are associated with blue rubber bleb nevus syndrome. This is a rare disorder which is characterized by large cutaneous hemangiomas and gastrointestinal bleeding from vascular malformations. Kaposi's sarcoma, a neoplasm of vascular endothelium and pericapillary cells that often presents on the skin, is associated with human immunodeficiency virus. Pseudoxanthoma elasticum, a genetic disorder of elastic fibers, is associated with distinctive skin abnormalities. Other hemorrhagic disorders with cutaneous manifestations include Ehlers-Danlos syndrome and malignant atrophic papulosis. Various gastrointestinal conditions producing polyps have cutaneous manifestations. Gardner's syndrome produces skin and bone lesions. Peutz-Jeghers syndrome causes small dark freckles on the lips and buccal mucosa. Canada-
Studies 65
Cronkhite syndrome is a rare disease characterized by cutaneous hyperpigmentation, alopecia, and nail changes. Other diseases producing gastrointestinal polyps and cutaneous manifestations include neurofibromatosis, Cowden's disease, Muir-Torre syndrome, and acrochordons. Cutaneous conditions associated with gastrointestinal neoplasms include cutaneous metastic disease, acanthosis nigricans, Leser-Trelat sign, tylosis palmaris et plantaris, carcinoid syndrome, and glucogonoma syndrome. Cutaneous manifestations such as erythema nodosum, oral aphthous ulcers, and pyoderma gangrenosum are associated with ulcerative colitis and Crohn's disease. Acute pancreatitis can be associated with Turner's sign and Cullen's sign. Pancreatic panniculitis also produces cutaneous manifestations. 10 figures and 77 references. ·
What Is the Optimal Strategy for Colon Cancer Surveillance in Patients With Ulcerative Colitis? Source: Cleveland Clinic Journal of Medicine. 66(5):273, 277, May 1999. Summary: The authors discuss colon cancer surveillance in patients with ulcerative colitis. The optimal colon cancer screening strategy regarding number of colonoscopies, interval between examinations, and biopsy protocol for patients with ulcerative colitis is unclear. The authors recommend that patients with ulcerative colitis undergo a colonoscopy every 1 to 3 years, and during these procedures, a biopsy should be taken every 10 centimeters (cm). If any of these biopsy samples reveals dysplasia, a total proctocolectomy should be performed. The authors make these recommendations because persons with inflammatory bowel disease have twice the risk of colorectal cancer as the general population, and the risk increases over time. A history of primary sclerosing cholangitis significantly adds to the risk of dysplasia and colorectal cancer in patients with ulcerative colitis. Biopsy samples should be taken every 10 cm because dysplasia can be present focally or diffusely. The authors recommend a total proctocolectomy after any dysplasia is found on biopsy because the risk of cancer is 19 percent in patients with lowgrade dysplasia, and 42 percent in patients with high-grade dysplasia. The authors conclude that research is going to determine alternative markers of malignancy to improve the sensitivity of current surveillance strategies. 10 references.
·
Dysplasia in Ulcerative Colitis: Is Radiography Adequate for Diagnosis? Source: Radiology. 199(1):85-90, April 1996.
66 Ulcerative Colitis
Summary: In order to determine the usefulness of barium enema examination in detecting dysplasia in patients with ulcerative colitis, researchers reviewed radiographic findings of 22 areas of dysplasia in 10 patients. The patients included seven men and three women who were age 34 to 81 at time of diagnosis. Serial changes in radiographic features of four areas of dysplasia in three patients were retrospectively investigated. Of 22 areas of dysplasia, 14 were shown on radiographs. Dysplasia in the rectum or sigmoid colon was depicted less frequently than that in other segments of the colon. Radiographic features were classified as obvious nodular protrusions or nodular protrusions with irregular mucosa. Six of the seven areas of dysplasia shown as irregular mucosa were accompanied by minute spiculations in the margin of the colonic lumen. There was no correlation between radiological features and histological grade of dysplasia. The researchers concluded that barium enema examinations may be used as a complementary method of cancer surveillance with endoscopy. These methods show about twothirds of lesions associated with dysplasia. The authors note that onethird of the areas of dysplasia in this study were diagnosed by means of biopsy specimens obtained in endoscopically flat mucosa. Because four of these seven flat areas of dysplasia had the appearance at radiography of coarse or fine nodularity or reticular mucosa, barium enema examination and colonoscopy may be best used as complementary examinations in the detection of dysplasia in patients with ulcerative colitis. 6 figures, 3 tables, 25 references. ·
Surveillance Issues in Inflammatory Bowel Disease: Ulcerative Colitis Source: Journal of Clinical Gastroenterology. 32(2): 99-105. February 2001. Contact: Available from Lippincott Williams and Wilkins, Inc. 12107 Insurance Way, Hagerstown, MD 21740. (800) 638-3030 or (301) 714-2300. Summary: This review article on the surveillance of patients with ulcerative colitis (UC) provides an overview of the criteria for evaluating screening and surveillance programs and applies the criteria to the available evidence to determine the effectiveness of the surveillance of patients with UC. The authors examine the clinical outcomes associated with surveillance, the additional clinical time required to confirm the diagnosis of dysplasia and cancer, compliance with surveillance and followup, and the effectiveness of the individual components of a surveillance program, including colonoscopy and pathologist's interpretation. The disability associated with colectomy is considered, as are the cost and acceptability of surveillance programs. Patients with longstanding UC are at risk for developing colorectal cancer, therefore recommended surveillance colonoscopy should be supported. The
Studies 67
diagnosis of cancer at an early stage in this group is associated with a good prognosis. The authors conclude that new endoscopic and histopathologic techniques used to improve the identification of high risk patients may enhance the effectiveness and cost effectiveness of surveillance practices. 2 figures. 5 tables. 44 references. ·
Ulcerative Duodenitis with Ulcerative Colitis: Is It Crohn's Disease Or Really Ulcerative Colitis? (editorial) Source: Journal of Clinical Gastroenterology. 32(2): 97. February 2001. Contact: Available from Lippincott Williams and Wilkins, Inc. 12107 Insurance Way, Hagerstown, MD 21740. (800) 638-3030 or (301) 714-2300. Summary: This editorial comments on an accompanying article in which two patients present the dilemma in differentiating between Crohn's disease and ulcerative colitis (the two subtypes of inflammatory bowel disease, IBD). The first case was that of a man, 31, with a history of left sided colitis who subsequently developed erosive duodenitis responsive to methylprednisolone. The second case was that of a woman, 30, with pancolitis who was admitted for closure of an ileostomy after a staged subtotal proctocolectomy with ileoproctostomy and diverting ileostomy. Her hospital course was complicated by the development of ulcerative duodenitis, again responsive to methylprednisolone. Crohn's disease may involve the stomach, the duodenum, or both, usually in conjunction with a more distal disease, although this is not always the case. Ulcerative colitis, on the other hand, is a disease of the colon almost always involving the rectum. The authors conclude that upper gastrointestinal tract inflammation (such as duodenitis) warrants further observation and maximum documentation to sustain the issue of whether ulcerative colitis can involve the upper gastrointestinal tract. They note that there might be a third type of IBD, whether occurring from a separate origin or arising from conversion of one type of IBD to the other. 8 references.
·
Ulcerative Colitis: A Rational Approach to Management Source: Consultant. 41(4): 541-548. April 1, 2001. Contact: Available from Cliggott Publishing Company. 330 Boston Post Road, Darien, CT 06820-4027. (203) 661-0600. Summary: Ulcerative colitis (UC), a type of inflammatory bowel disease can manifest as proctitis or proctosigmoiditis, left sided colitoss, or pancolitis. This article offers a rational approach to the management of patients with UC. Frequent low volume bowel movements, urgency, rectal bleeding, and tenesmus (ineffective spasms of the rectum) alone
68 Ulcerative Colitis
suggest proctitis. Prostration, fever, tachycardia (racing heartbeat), dehydration, and complications of blood loss (which may or may not be accompanied by symptoms of proctitis) suggest more severe disease or more extensive bowel involvement. For patients with mild to moderate disease, mesalamine is recommended to induce and maintain remission. Systemic corticosteroids can induce remission in patients with moderate to severe disease but are not useful for maintenance therapy. Azathioprine or 6 mercaptopurine can be used to wean patients with moderate to severe colitis from corticosteroids and to maintain remission. If severe colitis does not respond to corticosteroids, immunosuppressive therapy or colectomy may be needed. Other indications for surgery include development of acute complications related to disease activity and chronic complications, such as dysplasia, carcinoma, recurrent hemorrhage, or growth retardation in children. Annual surveillance colonoscopy with biopsy is recommended for patients with pancolitis and left sided colitis. ·
Ulcerative Colitis of the Appendix ('Ulcerative Appendicitis') Mimicking Acute Appendicitis Source: Canadian Journal of Gastroenterology. 15(3): 201-204. March 2001. Contact: Available from Pulsus Group, Inc. 2902 South Sheridan Way, Oakville, Ontario, Canada L6J 7L6. Fax (905) 829-4799. E-mail:
[email protected]. Summary: The appendix may be involved in ulcerative colitis (UC, a type of inflammatory bowel disease), in the setting of either diffuse or distal disease, and is usually diagnosed incidentally at the time of proctocolectomy (surgery to treat the UC). This article describes a patient in whom a rare case of 'ulcerative appendicitis' occurring on a background of clinically quiescent (no active symptoms) UC presented with the signs and symptoms of acute appendicitis. Prior to this presentation, the patient's UC was in remission for over 2 years. The patient was treated with laparotomy and the appendix was removed. Pathology showed acute inflammation confined to the mucosa, with neutrophilic crypt epithelial infiltration (cryptitis) and crypt abscesses consistent with appendix involvement by UC. Following appendectomy, the patient made a rapid and uneventful recovery; he was asymptomatic one day after the operation and was discharged home on day 2. Six months later, the colitis remained in complete clinical remission, and there has been no recurrence of right lower quadrant symptoms. The authors suggest that this patient's acute appendiceal pain syndrome derived from a complex interplay of mucosal immune, vascular, and
Studies 69
neurogenic factors, driven by a localized, active focus of UC. Appendectomy provided both the diagnosis and the cure of this acute illness. The authors conclude that although rare (and perhaps underrecognized), acute right lower quadrant pain in the setting of clinically quiescent UC may herald active ulcerative appendicitis, rather than typical suppurative appendicitis. 1 figure. 24 references. ·
Hemorrhoids and More: Common Causes of Blood in the Stool Source: Digestive Health and Nutrition. 3(4): 24-26. July-August 2001. Contact: Available from American Gastroenterological Association. 7910 Woodmont Avenue, 7th Floor, Bethesda, MD 20814. (877) DHN-4YOU or (301) 654-2055, ext. 650. E-mail:
[email protected]. Summary: Most rectal bleeding is caused by hemorrhoids, which usually can be simply and effectively treated. This article reviews the many other conditions, including some serious disorders, that can cause blood in the stool. The author reminds readers that bleeding from any part of the nearly 40 foot long digestive tract can cause blood in the stool. Accurate and timely diagnostic tests are important to determine the cause of any bleeding. Bleeding higher up in the gut, from the esophagus or stomach, can result in stools with a black, tarry appearance. Bleeding from the lower end, such as the colon, or in large amounts, can appear as pure blood, blood clots, or as blood mixed with or streaking the stool. Another kind of blood, occult or hidden blood, may not be visible at all. A number of prescription and over the counter (OTC) medications can cause bleeding in the stomach and small intestine. The blood thinning drug warfarin also can induce bleeding in the intestine, as can some antibiotics. Other causes of bleeding can include ulcers, gastritis (inflammation of the stomach lining), ulcerative colitis, Crohn's disease, polyps (small growths inside the intestine), diverticular disease, abnormalities in the blood vessels (vascular anomalies), anal fissures (tears) and fistulas (abnormal openings between the anal canal and other organs, such as the bladder), and abscesses (pockets of infection. The author reiterates the importance of timely diagnosis, including a thorough patient history and evaluation of symptoms. Diagnostic tests can include blood tests, digital rectal examination, endoscopy, colonoscopy, sigmoidoscopy, fecal occult blood test, barium x rays, angiography (x rays of blood vessels), and nuclear scanning. Treatment depends on the source and extent of the bleeding.
·
Is the Appendix a Vestigial Organ? Its Role in Ulcerative Colitis Source: Gastroenterology 121(3): 730-737. September 2001.
70 Ulcerative Colitis
Contact: Available from W.B. Saunders Company. 6277 Sea Harbor Drive, Orlando, FL 32887-4800. (800) 654-2452. Website: www.gastrojournal.org. Summary: This article summarizes a research study that considers the role of the appendix in ulcerative colitis (UC, a type of inflammatory bowel disease), including the possible role of appendectomy (removal of the appendix) in protecting against UC. The author briefly reviews the research in this area, then focuses on one particular study that was reported in the New England Journal of Medicine in 2001 (Andersson, R.E., et al, Volume 344). The investigators in that study conclude that the inflammatory response leading to an appendectomy rather than the removal of the appendix was the significant clinical factor negatively associated with developing UC at a later date. The absence of this protective effect in older patients with appendicitis also suggests that the immune mechanisms resulting in appendicitis in these patients may differ from those resulting in appendicitis before the third decade. The author then appends a lengthy commentary exploring the ramifications of these results. The author concludes that in the absence of evidence supporting a more causal role for the appendix, adoption of therapeutic appendectomy as a strategy to affect the incidence or clinical course of UC is premature, despite recent case reports suggesting clinical improvement and reduction in mucosal inflammatory mediators after appendectomy. Numerous studies are referred to in the text of this article. ·
Prevalence of Appendectomy Among Ulcerative Colitis Patients and Their Relatives Source: European Journal of Gastroenterology and Hepatology. 13(10): 1231-1233. October 2001. Contact: Available from Lippincott Williams and Wilkins. 241 Borough High Street, London SE1 1GB, UK 44(0)20-7940-7502. Fax: 44(0)20-79407574. Website: http://www.eurojgh.com/. Summary: It has been suggested that appendectomy (removal of the appendix) may protect against ulcerative colitis (UC). However, the incidences of appendectomy and UC in developed countries have diverged over the last 50 years, possibly as a consequence of environmental factors. This study was undertaken to determine whether the incidence of appendectomy is lower in patients with UC than in the general population. Patients with UC (n = 153), their relatives (n = 116), and members of the general population (n = 306) that had been matched for age, sex, and educational status were studied. Six percent of UC patients had undergone appendectomy. The corresponding figure for
Studies 71
non family controls was 20 percent. The rate of appendectomy within families (cases plus siblings) was 17 of 269 patients (6.3 percent) and was similar to that for UC patients alone. A negative association between appendectomy and UC exists in our patients with UC. In addition, the appendectomy rate in families of UC patients was lower than that in the general population, possibly implying that common environmental and genetic factors could play an important role in the divergent incidences of appendicitis and UC over the last 50 years. 2 tables. 18 references. ·
Coping with the Pain and Annoyance of Hemorrhoids Source: Digestive Health and Nutrition. p. 20-23. January-February 2000. Contact: Available from American Gastroenterological Association. 7910 Woodmont Avenue, 7th Floor, Bethesda, MD 20814. (877) DHN-4YOU or (301) 654-2055, ext. 650. E-mail:
[email protected]. Summary: This article helps readers understand and cope with hemorrhoids. The author describes how to distinguish between types of hemorrhoids, how to recognize the possible symptoms, and what treatment options are available. Following is a description of typical hemorrhoidal bleeding (bright red blood on the toilet tissue or in the toilet water); readers are encouraged to consult with a health care provider for even relatively minor rectal bleeding. Hemorrhoids are then defined in terms of their location. Internal hemorrhoids arise from blood vessels that lie up to 2 inches inside the anus, and external hemorrhoids form under the anal skin. Internal hemorrhoids, which are not usually seen or felt unless they protrude downward outside the anus, can cause other symptoms, including a feeling of fullness in the rectum (particularly after passing stool) or deep itching (pruritus). The author explores possible reasons why some people develop hemorrhoids, including certain working conditions (such as lots of sitting), weak muscles within the bowels, low fiber diets (which can result in straining with defecation), and pregnancy. Diagnostic tests can rule out other possible causes of rectal bleeding, including anal fissure, Crohn's disease or ulcerative colitis (inflammatory bowel diseases), Meckel's diverticulum, and cancer or noncancerous polyps in the bowel. Treatment options are reviewed, from lifestyle and dietary changes to topical therapy, to surgical treatments (rubber band ligation, laser treatment, and sclerosing injections).
72 Ulcerative Colitis
Federally-Funded Research on Ulcerative Colitis The U.S. Government supports a variety of research studies relating to ulcerative colitis and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.18 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to ulcerative colitis and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore ulcerative colitis and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for ulcerative colitis: ·
Project Title: Autoimmune Mechanism in Ulcerative Colitis Principal Investigator & Institution: Das, Kiron M.; Medicine; Univ of Med/Dent Nj-R W Johnson Med Sch Robert Wood Johnson Medical Sch Piscataway, Nj 08854 Timing: Fiscal Year 2000; Project Start 0-SEP-1993; Project End 1-AUG2002 Summary: The overall hypothesis for this proposal is that in patients with ulcerative colitis (UC) the colonic epithelium expresses autoantigen(s) which ma drive the immune destruction of the epithelial cells. We earlier identified a putative colonic autoantigen, p40, that belongs to cytoskeletal tropomyosin (TM) family, and majority of UC sera react with p40/TM. Utilizing recombinant hTM isoforms (hTM-5) and isoform specific monoclinal antibodies (mAb) developed by us, we have observed that the normal colon epithelial cells (CEC) contain mostly hTM5 and hTM4 and not hTM1-3. We demonstrated autoantibody response in UC against hTM5 and hTM1. We will examine if there is any qualitative and/or
18 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).
Studies 73
quantitative differences in hTM isoform expression I CEC from UC compared. Using the hTM5 isoform, we identified two HLA DR2-binding peptides. We will focus on T cell responses against hTM5 and the peptides. We will also examine I cells responses against hTM4 and other hTM isoforms. For T cell responses, we will use both peripheral blood mononuclear cells (PBMC) and lamina propria lymphocytes (LPL). We have shown both in UC mucosa as well as in selected colon cancer cells that UC associated autoantibodies bind at the same site as the 7E12H12 mAb (developed by us earlier using highly enriched p40) does. This mAb has unique organ distribution such as colon, biliary tract, skin, eyes and joints. Recently we identified that 7E12H12 mAb reacts with unioval colonic epithelial protein (CEP) of Mr>200K. Preliminary experiments suggest that CEP may act as a "shuttle" to externus hTM5. We will critically examine the relationship between hTMs and CEP. Using purified CEP, we will also be cloned. Human colon cDNA expression libraries from normal and UC colon mucosa and cDNA libraries from two colon cancer cell lines are developed and will be utilized. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Heparin in Treatment of Ulcerative Colitis Principal Investigator & Institution: Varilek, Gary W.; University of Kentucky University Sta Lexington, Ky 40506 Timing: Fiscal Year 2000 Summary: This study evaluates Heparin in the treatment of ulcerative colitis. This study also attempts to define the hypercoaguable state that accompanies flares of ulcerative colitis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
·
Project Title: Hyperbaric Oxygen Therapy for Severe Ulcerative Colitis Principal Investigator & Institution: Buchman, Alan L.; University of Texas Hlth Sci Ctr Houston Box 20036 Houston, Tx 77225 Timing: Fiscal Year 2000; Project Start 1-SEP-1985; Project End 8-FEB-2001 Summary: Ulcerative colitis is a chronic disease, characterized by intermittent periods of relapse and remission, that causes ulceration of the colon. Complications include colonic perforation, hemorrhage, pain, and extraintestinal manifestations of the disease including arthritis, skin lesions and liver disease. Treatment consists of 5-aminosalicylic (ASA) preparations (oral, topical or both) for mild to moderate disease and prednisone for more severe disease. Those patients who fail to respond to prednisone may require hospitalization, cyclosporin, methotrexate or colectomy. Preliminary data suggests the anticoagulant heparin may
74 Ulcerative Colitis
have efficacy in the treatment of active ulcerative colitis. Although the mechanism for heparin's effect in ulcerative colitis is unknown, it may relate to increasing the availability of blood and oxygen flow by the prevention of capillary microthrombi. Decreased rectal blood flow has been reported in ulcerative colitis. Several reports have described healing of perineal Crohn's disease involving the colorectum with hyperbaric oxygen therapy. This therapy has been shown to increase the dissolved oxygen content of plasma from 0.32 to 6.8 vol%. This increase in oxygen delivery may be important for the treatment of ischemic disease related to microvessel hypoperfusion. Recent data from both the acetic acid and trinitrobenzesulphonic (TNR) models of colitis in rats indicated disease severity could be limited with hyperbaric oxygen treatment. Specific Aims The primary objective of this pilot study is to determine if the potential exists for a clinical improvement in severe ulcerative colitis with hyperbaric oxygen treatment that could obviate or postpone the need for colectomy. The secondary endpoints will be to assess the effect of hyperbaric oxygen treatment on the symptoms of ulcerative colitis, endoscopic, hematologic and histologic parameters of inflammation, and patient quality of life. Subjects Five male or female patients (aged 18-64) will be recruited for this open-label pilot study. The duration of ulcerative colitis symptoms, as well as the duration of the current relapse will be recorded. Concurrent medications and their duration will be recorded. Treatment Each patient will be given 30 courses (2 hour duration) of hyperbaric oxygen treatment on a five day per week basis. This will consist of 100% oxygen at a pressure of 2.0 atmospheres absolute delivered in a multiplace hyperbaric chamber (Hyperbaric Oxygen Therapy Systems). Patients will continue whatever medical therapy they have been provided for their ulcerative colitis for the entire study duration. The only exception will be weaning of systemic corticosteroids. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Immunoregulatory Bacterial Factors in Ulcerative Colitis Principal Investigator & Institution: Donnenberg, Michael S.; Medicine; University of Maryland Balt Prof School Professional Schools Baltimore, Md 21201 Timing: Fiscal Year 2000; Project Start 0-SEP-1993; Project End 1-AUG2002 Summary: The GI mucosa contains a complex mixture of immune and non-immune cells and their products that maintain a dynamic balance to protect the host against enteric pathogens and at the same time maintain tolerance towards harmless products of digestion and the normal
Studies 75
bacterial flora. There is now substantial evidence that the human inflammatory bowel diseases (IBD) Crohn's disease and ulcerative colitis are multifactorial. Two of these factors are proper balance of the mucosal immune system and the microbial flora of the GI tract. The central hypothesis of this proposal is that specific products of enteric microbial flora contribute to the pathogenesis of IBD by inhibiting lymphocyte function thus causing imbalance of the mucosal immune system. During the first three funding years of this new grant we have made substantial progress towards testing this hypothesis by: 1)Proving that specific bacterial products can inhibit lymphocyte function. 2) Identifying novel bacterial chromosomal regions in EPEC responsible for expression of these factor(s). 3) Identifying similar genes and inhibitory function in other enteric bacteria. 4) Delineating the characteristics and mechanisms of inhibition of lymphoid function by bacterial factors. 5) Developing the necessary tools to directly test this hypothesis in whole animal mode systems. The specific aims of this proposal will further test different aspects of our general hypothesis: The first aim win be provide direct evidence for the novel concept that enteric immunosuppressive bacterial factors can contribute to inflammatory bowl diseases by demonstrating the immunoregulatory effects of bacterial products in two different murine models in vivo. Aim 2. We will identity and express potential novel immunosuppressive bacterial products by expressing genes and surrounding genes identified by the transposon mutants that we have made that lack inhibitory activity. The precise identification of specific bacterial factors will allow for more detailed studies of immune mechanisms and bacterial pathogenesis. Aim 3. Using crude and specific bacterial products, we will further delineate the mechanism of action of these factors by examining cell cycle arrest, apoptosis, and regulation of lymphokine gene expression and effects on oral tolerance. Aim 4. Concurrently we will directly test the hypothesis that bacterial immunosuppressive factors play a role in human IBD by isolating bacteria from stool of patients and controls and testing by cross hybridization screening and functional testing of clinical isolates for inhibitory activity. As we demonstrate in the extensive progress report and preliminary new data in this proposal, we have assembled the necessary tools and a multidisciplinary team to accomplish these ambitious goals that further substantiate our novel hypothesis for the pathogenesis of IBD. Significance: The results of these studies will provide not only insights into the pathogenesis of immune and inflammatory diseases of the G1 tract, but will provide further understanding of basic of microbial pathogenesis in the gastrointestinal tract and possible new specific targets for therapy of IBD. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
76 Ulcerative Colitis
·
Project Title: Oxidative Tumorigenesis
DNA
Damage
in
Ulcerative
Colitis
Principal Investigator & Institution: Brentnall, Teresa; Fred Hutchinson Cancer Research Center Box 19024, 1100 Fairview Ave N Seattle, Wa 98109 Timing: Fiscal Year 2000 Summary: This proposal focuses on the earliest steps in tumorigenesis: the origin of DNA damage that underlies the chain of genetic events that ultimately results in colonic cancer. Much has been elucidate in the past decade regarding the specific genetic events that lead to colonic tumorigenesis. Fundamental to this process are mutations and deletions in key tumor suppressor genes and oncogenes. However, central to this is the process that produces the genetic alterations in the first place. Our objective is to establish the role of oxidative stress in this regard, using the human model of ulcerative colitis (UC)-associated colonic neoplasia. UC is a chronic and diffuse inflammatory disease of the colonic mucosa with an increased risk of colon cancer, and is uniquely suited for studying the role of oxidative stress in tumorigenesis. UC neoplasia is hypothesized to be associated with widespread oxidative DNA damage and mutation, but direct evidence linking the two processes in currently lacking. Microsatellite instability, a marker of genome wide mutations, is present in non-neoplastic mucosa of patients with UC and we hypothesize that the genetic damage may be caused by oxidative stress and remains phenotypically occult until one or more specific genetic events precipitate neoplastic progression. Using the UC model, and the extensive human tissue database we have already developed, we will determine whether oxidative DNA damage and mutagenesis play a primary role in UC tumorigenesis. The application of several novel oxidative DNA damage assays a new oxygen free radical mutation assay that we have developed will provide a unique opportunity to unravel this potentially critical aspect of colonic tumorigenesis. This basic knowledge will be directly translated to clinical issues by determining if quantitative measurement of oxidative DNA damage and mutation can be used as intermediate markers of colonic neoplastic progression to improve cancer surveillance. Further, we will perform a pilot randomized, double-blind, placebo controlled intervention trial using dietary supplements in UC patients at highest risk. By preventing or decreasing oxidative DNA damage and mutagenesis, it may be possible to circumvent tumorigenesis entirely. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
Studies 77
·
Project Title: Phase II Study of Bxt 51072 in Patients w/Ulcerative Colitis Principal Investigator & Institution: Hanauer, Stephen B.; Professor of Medicine and Clinical Pharm; University of Chicago 5801 S Ellis Ave Chicago, Il 60637 Timing: Fiscal Year 2000 Summary: This is a 6 month study evaluating the safety, pharacokinetics and efficacy of BXT-51072 in patients with mild to moderately active ulcerative colitis. The study will be conducted in two phases with the pharmacokinetic phase utilizing the resources of the GCRC. During the first week on study medication, patients will be hospitalized in the GCRC unit for days 1 and 2 and for 8 hours on day 7 when multiple blood samples will be taken to obtain information on the pharmacokinetics of BXT-51072 in patients with ulcerative colitis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
·
Project Title: PPAR- Gamma Ligands in Ulcerative Colitis Principal Investigator & Institution: Lewis, James D.; Medicine; University of Pennsylvania 3451 Walnut Philadelphia, Pa 19104 Timing: Fiscal Year 2000; Project Start 1-MAR-2000; Project End 8-FEB2002 Summary: Ulcerative colitis (UC) is a chronic inflammatory disease involving all or a portion of the colon. Currently, there are few effective medical therapies for UC. Furthermore, because of the potential toxicity of the currently available agents, there is a great need for alternative therapies to treat patients with UC refractory to therapy with 5-ASA agents. Peroxisome proliferator-activated receptors (PPARs) are members of the nuclear hormone receptor superfamily of transcription factors whose activities are regulated by high affinity binding of small lipophilic ligands such as steroid hormones. A new class of diabetic drugs, the thiazolidinediones, has been developed to bind to the gamma subtype of the PPARs. Colonic epithelial cells express high levels of PPARgamma protein and have the ability to produce inflammatory cytokines that may contribute to the inflammatory process in UC. We have previously demonstrated that PPARgamma ligands significantly attenuate cytokine gene expression in colon cancer cell lines by inhibiting the activation of Nuclear Factor KappaB via an IkappaB dependent mechanism. Furthermore, we have demonstrated that thiazolidinedione ligands for PPARgamma markedly reduce colonic inflammation in a mouse model of ulcerative colitis. As such, we believe that PPARgamma ligands represent a potentially novel class of medications with therapeutic
78 Ulcerative Colitis
activity in ulcerative colitis. The proposed study is designed to test the feasibility of therapy with the PPARgamma ligand, troglitazone in mild to moderate ulcerative colitis. Fifteen patients with mild to moderate ulcerative colitis will be treated in a open labeled study with 600 mg troglitazone daily for 6 weeks. The main clinical outcome to be studied is the induction of remission of the UC as measured by the Sutherland Disease Activity Index. Additionally, patients will be monitored for any evidence that troglitazone therapy may worsen the severity of their UC. We will also determine the ability of this medication to modify colonic gene expression. We will use the techniques of immunohistochemistry and RNA analysis to detect expression of PPARgamma receptors in human colon tissue and to determine whether exposure to PPARgamma ligands results in altered expression of colonic gene products related to the inflammatory cascade. Specifically, we will localize expression of PPARgamma protein in inflamed colonic mucosa of patients with ulcerative colitis. Similarly, we will compare expression of target genes in inflamed colonic tissue prior to and following exposure to troglitazone. It is expected that in the final 6 months of this project, the investigators will organize a multicenter randomized controlled trial of troglitazone in the treatment of mild to moderate ulcerative colitis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Randomized, Controlled Trial of Heparin in Ulcerative Colitis Principal Investigator & Institution: Korzenik, Joshua; Washington University Lindell and Skinker Blvd St. Louis, Mo 63130 Timing: Fiscal Year 2000 Summary: Randomized, controlled trial of Heparin in ulcerative colitis: 612 week trial with close monitoring for complications; open-labeled compassionate use arm available for non-responders. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
·
Project Title: Bacterial Modulation of Gastrointestinal Inflammation Principal Investigator & Institution: Czinn, Steven J.; Professor; Case Western Reserve University 10900 Euclid Ave Cleveland, Oh 44106 Timing: Fiscal Year 2000; Project Start 5-SEP-2000; Project End 4-SEP-2005 Summary: Inflammatory bowel disease is a general term used to describe a group of chronic inflammatory disorders of the gastrointestinal tract. The two major clinical entities are ulcerative colitis and Crohn's disease. The two major clinical entities are ulcerative colitis and Crohn's disease. Clinically ulcerative colitis is confined to the large intestine, whereas
Studies 79
Crohn's disease may affect any part of the gastrointestinal tract. The Crohn'S & Colitis Foundation of America estimates that about two million Americans suffer from inflammatory bowel disease, 300,000 of them in the pediatric age group. Despite traditional medical therapy, inflammatory bowel disease in children results in significant morbidity such as chronic abdominal pain, rectal bleeding, anemia, weight loss and growth stunt. While active investigation has yet to discover what causes inflammatory bowel disease, it is believed than an inappropriate host immune response to antigens (bacteria or flood) normally found in the gastrointestinal tract results in a state of chronic inflammation. It has been difficult to investigate the relationship between luminal bacteria and immune dysregulation due to the lack of a colitis model induced by a single well-defined organism. Infection of the normally abiotic mouse stomach with Helicobacter and Lactobacillus species provides an excellent model for the investigation of bacteria-associated chronic inflammation of the gastrointestinal mucosa. We have developed several murine models in which various bacterial species, that are either normally non pathogenic or are only mildly pathogenic, can induce a state of chronic mucosal inflammation. The inflammatory response can be generated either by deleting or adding various immunoregulatory cytokines, or by systemically immunizing mice prior to infection. Of particular importance is the observation that the mucosal inflammation is maintained even when organisms are no longer detectable by microbiological and molecular techniques. Using these models we will test the central hypotheses that chronic gastrointestinal inflammation results from an aberrant immune response to antigenic stimulus, consisting of normal gastrointestinal bacteria. We propose to investigate the relationship between mucosal bacteria and immune regulation in the early, intermediate and late stages of chronic mucosal inflammation using our unique models of gastric Helicobacter and Lactobacillus infection. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: BIOADHESIVE POLYMERS FOR TREATMENT OF COLON DISEASE Principal Investigator & Institution: Kopecek, Jindrich N.; Professor and Chairman; Bioengineering; University of Utah 200 S University St Salt Lake City, Ut 84112 Timing: Fiscal Year 2000; Project Start 1-MAR-1988; Project End 0-NOV2002 Summary: (Adapted from investigator's abstract) The investigators propose to study new types of synthetic water soluble polymer systems-
80 Ulcerative Colitis
for the treatment of colon disease. These systems will be based on the concept of binding of polymeric carriers containing carbohydrate moieties complementary of colonic mucosal lectins and on the concept of site-specific release of drug N(2-aminosalicylic acid) by the degrading action of microbial enzymes present in the colon on the polymeric carriers. The aim is to design copolymer-drug conjugates which will increase the effectiveness of drugs given orally. The preliminary studies demonstrated that: 1) New synthetic routes are available to synthesize N(2-hydroxypropyl)methacrylamide (HPMA) copolymers containing high amounts of both the bioadhesive moiety (fucosylamine) and 5aminosalicylic acid (5-ASA). 2) HPMA copolymers containing fucosylamine bind specifically to the colonic mucosa of guinea pigs in vitro and in vivo. The higher the content of fucosylamine, the higher the binding. The binding can be inhibited by unbound fucose indicating the presence of a specific lectin in the colonic mucosa. 3) Incorporation of 5ASA into fucose containing copolymers further increases the binding to the colon in vitro and in vivo. 4) 5-ASA is released from the bioadhesive HPMA copolymers by Streptococcus faecium and by cecal rat cell free extract in vitro. In this application, bioadhesive HPMA copolymers containing high amounts of fucose and 5-ASA will be synthesized. The fucose binding lectin will be isolated from the guinea pig colon and characterized. Structural factors responsible for the association of HPMA copolymers with the lectin will be determined and the structure of bioadhesive HPMA copolymers will be optimized for the treatment of ulcerative colitis in guinea pigs. Based on pharmacokinetic studies and on the in vivo evaluation of the therapeutic efficacy, criteria will be established for the design of a new oral 5-ASA delivery system for clinical use. Experiments will be performed with human fecalase and cadaver colonic tissue to establish the correlation between animal and human tissue. The results of proposed studies will provide a new therapeutic method for the treatment of ulcerative colitis. Moreover, they will be of importance for the development of other colon-specific drug delivery systems. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Coregulatory Model of Smooth Muscle Myogenesis Principal Investigator & Institution: Mchugh, Kirk M.; Pathology, Anat/Cell Biology; Thomas Jefferson University 1020 Walnut St Philadelphia, Pa 19107 Timing: Fiscal Year 2000; Project Start 1-MAY-1999; Project End 0-APR2002
Studies 81
Summary: Mature gastrointestinal (GI) smooth muscle cells (SMCs) possess a high degree of developmental plasticity retaining the ability to interconvert between proliferative and differentiated states in response to external stimuli. Dysregulation of GI SMC differentiation is associated with a variety of GI disorders including Hirschsprung's disease, Crohn's disease, ulcerative colitis, motility disorders, and GI smooth muscle tumors. The goal of this proposal is to gain a better understanding of the molecular mechanisms controlling GI smooth muscle development. Our hypothesis is that GI smooth muscle myogenesis is controlled by the synergistic expression of transcription factors that are common to all muscle lineages, as well as those that are smooth muscle specific. This hypothesis is supported by recent data from our lab identifying a key regulatory complex within the gamma-smooth muscle isoactin gene promoter. Interconversion between proliferative and differentiated GI SMC phenotypes involves differential binding of serum response factor (SRF), distinct isotypes of MEF2, and additional unidentified transcription factors to this critical regulatory complex. Utilization of these same transcription factors by this complex is altered in G1 smooth muscle tumors and ulcerative colitis suggesting that SRF and MEF2 may play a role in GI smooth muscle pathogenesis. We plan to identify the key transcription factors involved in GI smooth muscle myogenesis by elucidating the factors controlling gamma-smooth muscle isoactin gene expression in primary cultures of GI SMCs. We will use a unique, massarrayed screening technique to isolate and identify novel GI smooth muscle-specific transcription factors. Cultured GI SMCs will be used to assess the functional role that SRF, MEF2, and novel transcription factors play in modulating GI SMC differentiation. Identifying the key transcription factors involved in GI smooth muscle myogenesis, and determining how they interact to modulate GI SMC phenotype is critical to gaining a better understanding of GI smooth muscle pathogenesis in a variety of GI diseases. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Histologic and Molecular Changes in UC Tumorigenesis Principal Investigator & Institution: Brentnall, Teri; Pathology; University of Washington Seattle, Wa 98195 Timing: Fiscal Year 2000; Project Start 5-JUL-1995; Project End 0-JUN2005 Summary: The long term objectives of this research are to develop a better understanding of the molecular mechanisms of neoplastic progression in chronic extensive ulcerative colitis (UC) and to use this knowledge for the prevention of cancer in UC. Our previous studies have
82 Ulcerative Colitis
indicated that chromosomal instability (CIN), detected by the presence of DNA aneuploidy, is a risk factor for the histologic progression to dysplasia or cancer. Recently, we have found that fluorescence in situ hybridization (FISH) is a more sensitive indicator of CIN: this method is able to detect evidence of chromosomal instability throughout the colon of patients with focal dysplasia or cancer. We believe that CIN is a reflection of the underlying process that contributes to cancer risk in UC. In our specific aim 1, we will determine the causes and patterns of CIN in UC, testing the hypotheses that it is related to elevated DNA damage or shortening of telomeres. In specific aim 2, we will determine whether dietary interventions can influence the levels of CIN as determined by markers derived from specific aim 1. Specifically, we propose two double-blind, placebo controlled, prospective pilot intervention studies: 1) using folate in UC patients with indefinite histology for dysplasia and 2) using ursodeoxycholic acid in UC patients with low-grade dysplasia in their colons. We will test for chromosomal instability pre and post intervention. If our hypothesis that CIN can be exploited as an early marker of dysplasia is correct, it might enable clinicians to take a few rectal biopsies, determine those patients who are at greatest risk for neoplastic progression and concentrate colonoscopic surveillance efforts on them. Moreover, this knowledge could help provide the underpinnings for development of cancer prevention strategies. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Inflammatory Bowel Disease in TCR-Mutant Mice Principal Investigator & Institution: Bhan, Atul K.; Associate Pathologist; Massachusetts General Hospital 55 Fruit St Boston, Ma 02114 Timing: Fiscal Year 2002; Project Start 5-SEP-1994; Project End 1-AUG2007 Summary: (provided by applicant): The spontaneous chronic colitis in T cell receptor (TCR) alpha mutant (knockout) mice provides an excellent experimental model of inflammatory bowel disease. The colitis shares many features with ulcerative colitis and is mediated by the T helper 2 pathway. Colonies of TCRalpha knockout mice deficient in cytokines and B cells have been developed at the Massachusetts General Hospital. The project will focus on the hypothesis that an unregulated immune response to enteric bacterial antigens at the mucosal site results in chronic colonic inflammation and autoantibody production. Certain enteric bacteria may play a protective role in the development of intestinal inflammation. The role of the appendix in the presentation of enteric bacterial antigens and in providing both pathogenic and regulatory cells in the pathogenesis of chronic colitis will be explored. A major focus of
Studies 83
the project will be to examine the regulatory role of B cells in colitis. We have developed a new model of granulomatous colitis in B cell and lL-4 deficient TCRalpha knockout mice. Thus, the development of two distinct colitis models in mice that are of genetically of identical background and exposed to the same environment, provides an opportunity to analyze the mechanisms involved in T helper 2-mediated ulcerative colitis-like and T helper 1-mediated Crohn's disease-like colitis. Additional models of T helper 1-mediated colitis in IL-10 KO mice and CD45RB high transfer model will also be studied. Experiments will be designed to develop specific interventions, including B cell based therapies, to prevent and suppress chronic intestinal inflammation and contribute to the development of new therapeutic modalities for human inflammatory bowel disease. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: NEOPLASTIC COMPLICATIONS IN INFLAMMATORY BOWEL DISEASE Principal Investigator & Institution: Meltzer, Stephen J.; Professor; Medicine; University of Maryland Balt Prof School Professional Schools Baltimore, Md 21201 Timing: Fiscal Year 2000; Project Start 0-SEP-1993; Project End 1-AUG2002 Summary: In recent years, our group and others have generated much new knowledge regarding the pathogenesis of ulcerative colitisassociated neoplasias and preneoplasias (UCANs), but much more remains to be discovered. We now know, for example, that tumor suppressor gene is a very early event in UCANs. We have also learned that microsatellite instability (MI) is relatively common and occurs early in UC-associated neoplastic progression, and that in doing so, it targets at least very important growth-suppressive genes, TGF-beta1RII and IGFIIR. The central unifying hypothesis of this proposal is that the p53 inactivation and MI pathways are separate but equally important routes to cancer occurring in ulcerative colitis, and that both are involved very early in this process. We will test this hypothesis by addressing the following Specific Aims: 1. To study MI at anonymous noncoding loci in a large cohort of UCAN patients. 1.a. To determine the occurrence of MI both with neoplastic or preneoplastic lesions and remote from them, as well as in patients without known or previously diagnosed colorectal dysplasia or cancer. 1.b. To apply a novel microassay based on the cloning of single microsatellite alleles, with the aim of detecting MI in histologically normal tissues as well as sera from UC patients. 2. To assess MI at coding region targets in a large cohort of UCAn patients. 2.a.
84 Ulcerative Colitis
To assess inactivation of IGFIR and TGF-beta1RII by coding region MI, loss of heterozygosity, or diminished IGFIIR or TGF-betaRII expression at the mRNA and protein levels. 2.b. To demonstrate deficient activation of TGF-beta1 by examining expression of the active and latent precursor forms of TGF-beta1, using antibodies specific for each protein, and excessive expression of IGFII ligand, in lesions with or without IGFIR mutations. 2.c. To discover additional, novel coding region targets of MI in UCANs. 3. To develop a dynamic in vitro model of IGFIR function and dysfunction. 3.a. To discover colon cancer cell lines containing IGFIIR inactivating mutations. 3.b. To utilize SW48 colon cells, which possess an IGFIRR mutation, in cell complementation and transfection studies to test the growth suppressive activity of IGFIIR. 4. To investigate p53 tumor suppressor gene alterations in a large cohort of UCAN patients. 4.a. To determine whether the p53 inactivation and MI pathways are nonoverlapping. 4.b. To investigate the specific p53 base substitutions in all UC tissues studied, in order to prove the existence of a unique p53 mutational spectrum in UC. 5. To determine the prognostic significance and/or early detection value of p53 inactivation, along with that of MI occurring in noncoding regions and at specific targets, including IGFIR and TGF-beta1RII, using initial and followup clinical correlative parameters in a large cohort of UC patients. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
E-Journals: PubMed Central19 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).20 Access to this growing archive of e-journals is free and unrestricted.21 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “ulcerative colitis” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for ulcerative colitis in the PubMed Central database: Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 20 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 21 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 19
Studies 85
·
Research Paper:Quality-of-Life Research on the Internet: Feasibility and Potential Biases in Patients with Ulcerative Colitis by Roy M. Soetikno, Ramzi Mrad, Victoria Pao, and Leslie A. Lenert; 1997 November http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=61260
The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.22 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with ulcerative colitis, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “ulcerative colitis” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “ulcerative colitis” (hyperlinks lead to article summaries): ·
Psychiatric observations on attacks of gout in a patient with ulcerative colitis. Report of a case. Author(s): Castelnuovo-Tedesco P. Source: Psychosomatic Medicine. 1966 November-December; 28(6): 781-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5972491&dopt=Abstract
·
Psychiatric study of a consecutive series of 34 patients with ulcerative colitis. Author(s): Feldman F, Cantor D, Soll S, Bachrach W.
PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.
22
86 Ulcerative Colitis
Source: British Medical Journal. 1967 July 1; 3(556): 14-7. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6028848&dopt=Abstract ·
Psychologic aspect of ulcerative colitis in children. Author(s): Josselyn IM, Littner N, Spurlock J. Source: J Am Med Womens Assoc. 1966 April; 21(4): 303-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4223411&dopt=Abstract
·
Psychosomatic medicine. XII. Psychosomatic aspects of ulcerative colitis. Author(s): Shields R. Source: Practitioner. 1972 December; 209(254): 851-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4654758&dopt=Abstract
·
Pyoderma gangrenosum induced by acupuncture in a patient with ulcerative colitis. Author(s): Castro-Duran J, Martin-Armada M, Jimenez-Alonso J. Source: Archives of Internal Medicine. 2000 August 14-28; 160(15): 2394. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10927741&dopt=Abstract
·
Randomized clinical trial of Plantago ovata seeds (dietary fiber) as compared with mesalamine in maintaining remission in ulcerative colitis. Spanish Group for the Study of Crohn's Disease and Ulcerative Colitis (GETECCU). Author(s): Fernandez-Banares F, Hinojosa J, Sanchez-Lombrana JL, Navarro E, Martinez-Salmeron JF, Garcia-Puges A, Gonzalez-Huix F, Riera J, Gonzalez-Lara V, Dominguez-Abascal F, Gine JJ, Moles J, Gomollon F, Gassull MA. Source: The American Journal of Gastroenterology. 1999 February; 94(2): 427-33. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10022641&dopt=Abstract
Studies 87
·
Rectal electrolyte transport and mucosal permeability in ulcerative colitis and Crohn's disease. Author(s): Rask-Madsen J, Hammersgaard EA, Knudsen E. Source: The Journal of Laboratory and Clinical Medicine. 1973 March; 81(3): 342-53. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4631401&dopt=Abstract
·
Relaxation training as a treatment for chronic pain caused by ulcerative colitis. Author(s): Shaw L, Ehrlich A. Source: Pain. 1987 June; 29(3): 287-93. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3302842&dopt=Abstract
·
Serum bile acids in relation to disease activity and intake of dietary fibers in juvenile ulcerative colitis. Author(s): Ejderhamn J, Strandvik B. Source: Digestion. 1991; 50(3-4): 162-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1667392&dopt=Abstract
·
Should folic acid supplementation be used to reduce the risk of cancer in ulcerative colitis? Author(s): Williams CN. Source: Canadian Journal of Gastroenterology = Journal Canadien De Gastroenterologie. 1999 November; 13(9): 715-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10633822&dopt=Abstract
·
Study of the mechanisms of acupuncture and moxibustion treatment for ulcerative colitis rats in view of the gene expression of cytokines. Author(s): Wu HG, Zhou LB, Pan YY, Huang C, Chen HP, Shi Z, Hua XG. Source: World Journal of Gastroenterology : Wjg. 1999 December; 5(6): 515-517. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11819501&dopt=Abstract
·
TCM differential treatment of 57 cases of chronic gastritis complicated by ulcerative colitis. Author(s): Meng M.
88 Ulcerative Colitis
Source: J Tradit Chin Med. 1999 March; 19(1): 10-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10453577&dopt=Abstract ·
The effect of folic acid supplementation on the risk for cancer or dysplasia in ulcerative colitis. Author(s): Lashner BA, Provencher KS, Seidner DL, Knesebeck A, Brzezinski A. Source: Gastroenterology. 1997 January; 112(1): 29-32. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8978339&dopt=Abstract
·
The response to psychotherapy in chronic ulcerative colitis. II. Factors arising from the therapeutic situation. Author(s): Karush A, Daniels GE, O'Connor JF, Stern LO. Source: Psychosomatic Medicine. 1969 May-June; 31(3): 201-26. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5790112&dopt=Abstract
·
Treatment of ulcerative colitis with acupuncture. Author(s): Chen Z. Source: J Tradit Chin Med. 1995 September; 15(3): 231-3. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8569266&dopt=Abstract
·
Treatment of ulcerative colitis with fish oil supplementation: a prospective 12 month randomised controlled trial. Author(s): Hawthorne AB, Daneshmend TK, Hawkey CJ, Belluzzi A, Everitt SJ, Holmes GK, Malkinson C, Shaheen MZ, Willars JE. Source: Gut. 1992 July; 33(7): 922-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1353742&dopt=Abstract
·
Treatment of ulcerative colitis with germinated barley foodstuff feeding: a pilot study. Author(s): Mitsuyama K, Saiki T, Kanauchi O, Iwanaga T, Tomiyasu N, Nishiyama T, Tateishi H, Shirachi A, Ide M, Suzuki A, Noguchi K, Ikeda H, Toyonaga A, Sata M.
Studies 89
Source: Alimentary Pharmacology & Therapeutics. 1998 December; 12(12): 1225-30. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9882030&dopt=Abstract ·
Ulcerative colitis in the Kinneret sub district, Israel 1965-1994: incidence and prevalence in different subgroups. Author(s): Shapira M, Tamir A. Source: Journal of Clinical Gastroenterology. 1998 September; 27(2): 1347. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9754774&dopt=Abstract
·
Ulcerative colitis: emotional problems and their management. Author(s): O'Connor JF. Source: Med Times. 1966 January; 94(1): 106-12. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5900553&dopt=Abstract
·
Ulmus macrocarpa hance for the treatment of ulcerative colitis--a report of 36 cases. Author(s): Ye G, Cao Q, Chen X, Li S, Jia B. Source: J Tradit Chin Med. 1990 June; 10(2): 97-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2392003&dopt=Abstract
Vocabulary Builder Aberrant: Wandering or deviating from the usual or normal course. [EU] Alimentary: Pertaining to food or nutritive material, or to the organs of digestion. [EU] Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Alopecia: Baldness; absence of the hair from skin areas where it normally is present. [EU] Angiography: Radiography of blood vessels after injection of a contrast medium. [NIH] Antibodies: Proteins that the body makes to protect itself from foreign
90 Ulcerative Colitis
substances. In diabetes, the body sometimes makes antibodies to work against pork or beef insulins because they are not exactly the same as human insulin or because they have impurities. The antibodies can keep the insulin from working well and may even cause the person with diabetes to have an allergic or bad reaction to the beef or pork insulins. [NIH] Antigens: Substances that cause an immune response in the body. The body "sees" the antigens as harmful or foreign. To fight them, the body produces antibodies, which attack and try to eliminate the antigens. [NIH] Antihypertensive: An agent that reduces high blood pressure. [EU] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Asymptomatic: No symptoms; no clear sign of disease present. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Bifidobacterium: A rod-shaped, gram-positive, non-acid-fast, non-sporeforming, non-motile bacterium that is a genus of the family actinomycetaceae. It inhabits the intestines and feces of humans as well as the human vagina. [NIH] Bile: An emulsifying agent produced in the liver and secreted into the duodenum. Its composition includes bile acids and salts, cholesterol, and electrolytes. It aids digestion of fats in the duodenum. [NIH] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU] Buccal: Pertaining to or directed toward the cheek. In dental anatomy, used to refer to the buccal surface of a tooth. [EU] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Catechin: Extracted from Uncaria gambier, Acacia catechu and other plants; it stabilizes collagen and is therefore used in tanning and dyeing; it prevents capillary fragility and abnormal permeability, but was formerly used as an antidiarrheal. [NIH]
Studies 91
Causal: Pertaining to a cause; directed against a cause. [EU] Chlorella: Nonmotile unicellular green algae potentially valuable as a source of high-grade protein and B-complex vitamins. [NIH] Chromosomal: Pertaining to chromosomes. [EU] Clostridium: A genus of motile or nonmotile gram-positive bacteria of the family bacillaceae. Many species have been identified with some being pathogenic. They occur in water, soil, and in the intestinal tract of humans and lower animals. [NIH] Collagen: The protein substance of the white fibres (collagenous fibres) of skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Concomitant: Accompanying; accessory; joined with another. [EU] Contracture: A condition of fixed high resistance to passive stretch of a muscle, resulting from fibrosis of the tissues supporting the muscles or the joints, or from disorders of the muscle fibres. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Distal: Remote; farther from any point of reference; opposed to proximal. In dentistry, used to designate a position on the dental arch farther from the median line of the jaw. [EU] Diverticulum: A pathological condition manifested as a pouch or sac opening from a tubular or sacular organ. [NIH] Electrolyte: A substance that dissociates into ions when fused or in solution, and thus becomes capable of conducting electricity; an ionic solute. [EU] Endothelium: The layer of epithelial cells that lines the cavities of the heart and of the blood and lymph vessels, and the serous cavities of the body, originating from the mesoderm. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU]
92 Ulcerative Colitis
Epithelium: The covering of internal and external surfaces of the body, including the lining of vessels and other small cavities. It consists of cells joined by small amounts of cementing substances. Epithelium is classified into types on the basis of the number of layers deep and the shape of the superficial cells. [EU] Erythema: A name applied to redness of the skin produced by congestion of the capillaries, which may result from a variety of causes, the etiology or a specific type of lesion often being indicated by a modifying term. [EU] Exogenous: Developed or originating outside the organism, as exogenous disease. [EU] Fluorescence: The property of emitting radiation while being irradiated. The radiation emitted is usually of longer wavelength than that incident or absorbed, e.g., a substance can be irradiated with invisible radiation and emit visible light. X-ray fluorescence is used in diagnosis. [NIH] Gastritis: Inflammation of the stomach. [EU] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Helicobacter: A genus of gram-negative, spiral-shaped bacteria that is pathogenic and has been isolated from the intestinal tract of mammals, including humans. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hybridization: The genetic process of crossbreeding to produce a hybrid. Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hybridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Hyperbaric: Characterized by greater than normal pressure or weight; applied to gases under greater than atmospheric pressure, as hyperbaric oxygen, or to a solution of greater specific gravity than another taken as a standard of reference. [EU] Hyperpigmentation: Excessive pigmentation of the skin, usually as a result of increased melanization of the epidermis rather than as a result of an increased number of melanocytes. Etiology is varied and the condition may arise from exposure to light, chemicals or other substances, or from a
Studies 93
primary metabolic imbalance. [NIH] Immunohistochemistry: Histochemical localization of immunoreactive substances using labeled antibodies as reagents. [NIH] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Jaundice: A clinical manifestation of hyperbilirubinemia, consisting of deposition of bile pigments in the skin, resulting in a yellowish staining of the skin and mucous membranes. [NIH] Lactobacillus: A genus of gram-positive, microaerophilic, rod-shaped bacteria occurring widely in nature. Its species are also part of the many normal flora of the mouth, intestinal tract, and vagina of many mammals, including humans. Pathogenicity from this genus is rare. [NIH] Lectins: Protein or glycoprotein substances, usually of plant origin, that bind to sugar moieties in cell walls or membranes and thereby change the physiology of the membrane to cause agglutination, mitosis, or other biochemical changes in the cell. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Ligation: Application of a ligature to tie a vessel or strangulate a part. [NIH] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Lipophilic: Having an affinity for fat; pertaining to or characterized by lipophilia. [EU] Lumen: The cavity or channel within a tube or tubular organ. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU]
94 Ulcerative Colitis
Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Methotrexate: An antineoplastic antimetabolite with immunosuppressant properties. It is an inhibitor of dihydrofolate reductase and prevents the formation of tetrahydrofolate, necessary for synthesis of thymidylate, an essential component of DNA. [NIH] Microbiological: Pertaining to microbiology : the science that deals with microorganisms, including algae, bacteria, fungi, protozoa and viruses. [EU] Microorganism: A microscopic organism; those of medical interest include bacteria, viruses, fungi and protozoa. [EU] Motility: The ability to move spontaneously. [EU] Mutagenesis: Process of generating genetic mutations. It may occur spontaneously or be induced by mutagens. [NIH] Nasal: Pertaining to the nose. [EU] Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Occult: Obscure; concealed from observation, difficult to understand. [EU] Opiate: A remedy containing or derived from opium; also any drug that induces sleep. [EU] Pancreatitis: Inflammation (pain, tenderness) of the pancreas; it can make the pancreas stop working. It is caused by drinking too much alcohol, by disease in the gallbladder, or by a virus. [NIH] Panniculitis: An inflammatory reaction of the subcutaneous fat, which may involve the connective tissue septa between the fat lobes, the septa lobules and vessels, or the fat lobules, characterized by the development of single or multiple cutaneous nodules. [EU] Pathogen: Any disease-producing microorganism. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Perineal: Pertaining to the perineum. [EU] Pharmacokinetics: The action of drugs in the body over a period of time, including the processes of absorption, distribution, localization in tissues,
Studies 95
biotransformation, and excretion. [EU] Pharmacologic: Pertaining to pharmacology or to the properties and reactions of drugs. [EU] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Plantago: Three different species of Plantago or plantain, P. psyllium, P. ovata and P. indica. The seeds swell in water and are used as laxatives. [NIH] Porphyria: A pathological state in man and some lower animals that is often due to genetic factors, is characterized by abnormalities of porphyrin metabolism, and results in the excretion of large quantities of porphyrins in the urine and in extreme sensitivity to light. [EU] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Procollagen: A biosynthetic precursor of collagen containing additional amino acid sequences at the amino-terminal ends of the three polypeptide chains. Protocollagen, a precursor of procollagen consists of procollagen peptide chains in which proline and lysine have not yet been hydroxylated. [NIH]
Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Pruritus: Itching skin; may be a symptom of diabetes. [NIH] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychogenic: Produced or caused by psychic or mental factors rather than organic factors. [EU] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Psychotherapy: A generic term for the treatment of mental illness or emotional disturbances primarily by verbal or nonverbal communication. [NIH]
Pyoderma: Any purulent skin disease. Called also pyodermia. [EU] Quiescent: Marked by a state of inactivity or repose. [EU] Radiography: The making of film records (radiographs) of internal structures of the body by passage of x-rays or gamma rays through the body
96 Ulcerative Colitis
to act on specially sensitized film. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Refractory: Not readily yielding to treatment. [EU] Saccharomyces: A genus of ascomycetous fungi Saccharomycetaceae, order saccharomycetales. [NIH]
of the
family
Sarcoma: A tumour made up of a substance like the embryonic connective tissue; tissue composed of closely packed cells embedded in a fibrillar or homogeneous substance. Sarcomas are often highly malignant. [EU] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Sigmoid: 1. shaped like the letter S or the letter C. 2. the sigmoid colon. [EU] Sigmoidoscopy: Endoscopic examination, therapy or surgery of the sigmoid flexure. [NIH] Species: A taxonomic category subordinate to a genus (or subgenus) and superior to a subspecies or variety, composed of individuals possessing common characters distinguishing them from other categories of individuals of the same taxonomic level. In taxonomic nomenclature, species are designated by the genus name followed by a Latin or Latinized adjective or noun. [EU] Streptococcus: A genus of gram-positive, coccoid bacteria whose organisms occur in pairs or chains. No endospores are produced. Many species exist as commensals or parasites on man or animals with some being highly pathogenic. A few species are saprophytes and occur in the natural environment. [NIH] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Synergistic: Acting together; enhancing the effect of another force or agent. [EU]
Tachycardia: Excessive rapidity in the action of the heart; the term is usually applied to a heart rate above 100 per minute and may be qualified as atrial, junctional (nodal), or ventricular, and as paroxysmal. [EU] Tears: The fluid secreted by the lacrimal glands. This fluid moistens the conjunctiva and cornea. [NIH]
Studies 97
Telomere: A terminal section of a chromosome which has a specialized structure and which is involved in chromosomal replication and stability. Its length is believed to be a few hundred base pairs. [NIH] Tenesmus: Straining, especially ineffectual and painful straining at stool or in urination. [EU] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Tropomyosin: A protein found in the thin filaments of muscle fibers. It inhibits contraction of the muscle unless its position is modified by troponin. [NIH]
Vascular: Pertaining to blood vessels or indicative of a copious blood supply. [EU] Warfarin: An anticoagulant that acts by inhibiting the synthesis of vitamin K-dependent coagulation factors. Warfarin is indicated for the prophylaxis and/or treatment of venous thrombosis and its extension, pulmonary embolism, and atrial fibrillation with embolization. It is also used as an adjunct in the prophylaxis of systemic embolism after myocardial infarction. Warfarin is also used as a rodenticide. [NIH]
Books 99
CHAPTER 5. BOOKS ON ULCERATIVE COLITIS Overview This chapter provides bibliographic book references relating to ulcerative colitis. You have many options to locate books on ulcerative colitis. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on ulcerative colitis include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.
Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “ulcerative colitis” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on ulcerative colitis:
100 Ulcerative Colitis
·
Pediatric Gastrointestinal Disease. 2nd ed Source: Philadelphia, PA: W.B. Saunders Company. 1999. 823 p. Contact: Available from W.B. Saunders Company. Book Order Fulfillment Department, 11830 Westline Industrial Drive, Saint Louis, MO 63146-9988. (800) 545-2522 or (314) 453-7010. Fax (800) 568-5136 or (314) 453-7095. E-mail:
[email protected]. Website: customerservice.wbsaunders.com. Price: $155.00 plus shipping and handling. ISBN: 0721674615. Summary: This medical textbook covers all facets of clinical pediatric gastrointestinal disease. The text emphasizes a clinical focus and incorporates anatomy and physiology considerations into each chapter rather than a separate section. The book is organized into distinct sections, starting with the common clinical problems and followed by organ specific diseases. General chapters on clinical problems cover chronic abdominal pain of childhood and adolescence, vomiting, diarrhea, constipation and encopresis (fecal soiling), failure to thrive, gastrointestinal hemorrhage, eating disorders and obesity, jaundice, ascites, caustic ingestion and foreign bodies, abdominal masses in pediatric patients, and abdominal surgical emergencies. Sections on diseases of the esophagus, stomach, and the small and large bowel (intestine) are followed by chapters reviewing the clinical facets of pediatric liver disease. Specific chapters include gastrointestinal reflux, achalasia and other motor disorders, congenital anomalies, gastric motility disorders, bezoars (a mass of food, hair or other components found in the stomach or intestine), maldigestion and malabsorption, celiac disease, short bowel syndrome, enteric parasites, Crohn's disease, ulcerative colitis, polyps, appendicitis, hernia, Hirschsprung's disease, neoplasms (cancerous and noncancerous), hepatitis, gallbladder diseases, and liver transplantation. The last two sections review diseases of the pancreas and basic nutrition in children, including pancreatitis, cystic fibrosis, nutritional assessment, parenteral (outside the digestive system, for example, intravenous nutrition) and enteral nutrition, and the management of diarrhea. Each chapter offers black and white photographs and figures and concludes with extensive references. A detailed subject index concludes the text.
·
Evidence Based Gastroenterology and Hepatology Source: London, UK: BMJ Publishing Group. 1999. 557 p. Contact: Available from BMJ Publishing Group. BMA Books, BMA House, Tavistock Square, London WCIH 9JR. Fax 44 (0)20 7383 6402. E-
Books 101
mail:
[email protected]. Website: www.bmjbooks.com. Price: Contact publisher for price. ISBN: 0727911821. Summary: This book emphasizes the approaches of evidence based medicine in gastroenterology (the study of the gastrointestinal tract and gastrointestinal diseases) and hepatology (the study of the liver and liver diseases). The authors use clinical epidemiology to present the strongest and most current evidence for interventions for the major diseases of the gastrointestinal tract and liver. Thirty chapters are included: an introduction to evidence based gastroenterology and hepatology; gastroesophageal reflux disease (GERD); ulcer disease and Helicobacter pylori; ulcer disease and nonsteroidal antiinflammatory drugs; treatment options for non-variceal gastrointestinal hemorrhage; the diagnosis and treatment of functional dyspepsia (indigestion); the diagnosis, treatment, and prognosis of celiac disease (gluten intolerance); the treatment of Crohn's disease; the diagnosis, prognosis, and treatment of ulcerative colitis (UC); pouchitis after restorative proctocolectomy; metabolic bone disease in gastrointestinal disorders; colorectal cancer in UC and the role of surveillance; population based screening and surveillance for colorectal cancer; irritable bowel syndrome (IBS); the surgical treatment of gallstone disease; the prognosis and treatment of acute pancreatitis; hepatitis C; hepatitis B; the screening and treatment of alcoholic liver disease; hemochromatosis and Wilson disease; primary biliary cirrhosis (PBC); autoimmune hepatitis; primary sclerosing cholangitis (PSC); the prevention and treatment of portal hypertensive bleeding; ascites, hepatorenal syndrome, and spontaneous bacterial peritonitis; hepatic encephalopathy; hepatocellular carcinoma; fulminant hepatic failure; the prevention and treatment of rejection after liver transplantation; and the prevention and treatment of infection after liver transplantation. Each chapter features the grading of recommendations and levels of evidence used by the authors to note the research basis on which their clinical guidelines are formed. Chapters conclude with extensive reference lists; the text concludes with a subject index. A glossary of acronyms is also provided. ·
Managing Your Child's Crohn's Disease or Ulcerative Colitis Source: New York, NY: MasterMedia Limited. 1996. 163 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 9322423 or (212) 685-3440. Fax (212) 779-4098. E-mail:
[email protected]. Price: $16.95 (members) or $21.95 (nonmembers). Also available from MasterMedia Limited. 17 East 89th Street, New York, NY 10128. (800) 334-8232 or (212) 546-7650. Price: $21.95. ISBN: 1571010238.
102 Ulcerative Colitis
Summary: This book about Crohn's disease and ulcerative colitis provides current information so that parents and children can learn how to handle these inflammatory bowel diseases (IBD). Interviews with children coping with these illnesses add a special insight to the book. Sixteen chapters are presented in three sections: diagnosing IBD, the treatment of IBD, and living with IBD. Topics include symptoms, the first visit to the gastroenterologists, laboratory tests, the causes of IBD, pediatric gastroenterology, surgery, the role of diet, treating slow growth through nutrition, psychosocial factors, school, camp, play and recreation, family life, and pregnancy. The final chapter provides a series of common questions and answers for young patients. The book concludes with a resource section that provides information about the Crohn's and Colitis Foundation of America (CCFA), about the National Digestive Diseases Information Clearinghouse (NDDIC), a guide to medications used in the treatment of IBD, a glossary of terms, and a Children's Legacy Scroll of Honor. ·
Contemporary Diagnosis and Management of Ulcerative Colitis and Proctitis Source: Newtown, PA: Handbooks in Health Care. 1995. 173 p. Contact: Available from Handbooks in Health Care. 9 Pheasant Run, Newtown, PA 18940. (215) 860-9600. Price: $9.95 plus $2 shipping (as of 1995). ISBN: 1884065082. Summary: In this handbook, the author provides readers with a detailed overview of the diagnosis and management of ulcerative colitis and proctitis. Fourteen chapters cover epidemiology; etiology, pathogenesis, and pathophysiology; clinical presentation, diagnostic evaluation, and differential diagnosis; commonly used drugs for ulcerative colitis and ulcerative proctitis; potential new drugs and novel therapeutic approaches; the management of ulcerative proctitis; the management of distal ulcerative colitis, left-sided ulcerative colitis, and mild to moderate pancolitis; the management of fulminant ulcerative colitis and toxic megacolon; surgical management; associated extraintestinal disorders; colon cancer surveillance; pregnancy and nursing; the pediatric patient and the elderly patient; and psychosocial and quality of life issues. Each chapter includes figures and tables where appropriate, and brief references; a subject index concludes the handbook.
·
Understanding Crohn Disease and Ulcerative Colitis Source: Jackson, MS: University Press of Mississippi. 2000. 116 p.
Books 103
Contact: Available from University Press of Mississippi. 3825 Ridgewood Road, Jackson, MS 39211-6492. (601) 432-6205. Fax (601) 432-6217. E-mail:
[email protected]. Price: $28.00 plus shipping and handling. ISBN: 1578062039. Summary: Crohn's disease and ulcerative colitis, together known as inflammatory bowel disease (IBD), are chronic illnesses of unknown origin. Written from a patient's perspective, this book provides timely information about how to obtain and maintain the highest quality of life possible while living with IBD. The inflammation within the intestinal tract leads to some or all of these clinical symptoms: diarrhea (with or without blood), abdominal pain, fever, and fatigue. The disease is characterized by periods of flareup and remission. Some individuals, especially those who have ulcerative colitis, may have one acute episode in their lifetime. But most people with IBD have recurrent periods of illness. Even in the absence of clinical symptoms there is usually radiological and laboratory evidence of the disease. Current medical treatments reduce symptoms, but do not cure either disease. Because of the unpredictable nature of the disease process, quality of life can be severely impaired. Besides providing basic information, this book describes various medical, surgical, nutritional, and even spiritual treatments. The authors also look at the special situations of IBD in children and in the elderly, and at issues surrounding IBD and reproductive function (in men and in women). The authors stress that patients with IBD can do much to improve their emotional and psychological capabilities for facing the disease, and thus can actively improve their quality of life. The book concludes with appendices of information resources, a glossary of terms, and a subject index.
Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to ulcerative colitis (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·
Diet Management for Ulcerative Colitis: Menus, Recipes, and Methods of Food Preparation for Anti-Inflammatory Treatment. by Map Hanson
104 Ulcerative Colitis
(1971); ISBN: 0398023077; http://www.amazon.com/exec/obidos/ASIN/0398023077/icongroupin terna ·
Triumph over Disease--By Fasting and Natural Diet by Jack. Goldstein (1977); ISBN: 0668041382; http://www.amazon.com/exec/obidos/ASIN/0668041382/icongroupin terna
·
My Daughter, My Son by Inge. Trachtenberg (1978); ISBN: 0671400436; http://www.amazon.com/exec/obidos/ASIN/0671400436/icongroupin terna
·
Inflammatory Bowel Disease: A Guide for Patients and Their Families by Sktephen B. Hanauer, Joseph B. Kirsner (1984); ISBN: 0890049505; http://www.amazon.com/exec/obidos/ASIN/0890049505/icongroupin terna
·
Crohn's Disease and Ulcerative Colitis Fact Book by Peter A. Banks (Editor), et al (1984); ISBN: 0684179679; http://www.amazon.com/exec/obidos/ASIN/0684179679/icongroupin terna
·
People Not Patients (1985); ISBN: 0840363214; http://www.amazon.com/exec/obidos/ASIN/0840363214/icongroupin terna
·
Mucosal Ulcerative Colitis by David G. Jagelman (Editor) (1986); ISBN: 0879932449; http://www.amazon.com/exec/obidos/ASIN/0879932449/icongroupin terna
·
Ulcerative Colitis by Colm A. O'Morain (Editor) (1991); ISBN: 0849354986; http://www.amazon.com/exec/obidos/ASIN/0849354986/icongroupin terna
·
Colitis (The Experience of Illness) by Michael P. Kelly (1992); ISBN: 0415038391; http://www.amazon.com/exec/obidos/ASIN/0415038391/icongroupin terna
·
The Clinician's Guide to Ulcerative Colitis and Crohn's Disease by P. P. Jewell, et al (1992); ISBN: 0443048037; http://www.amazon.com/exec/obidos/ASIN/0443048037/icongroupin terna
·
The Surgical Management of Crohn's Disease & Ulcerative Colitis by Devinder Kumar, John Alexander-Williams (1993); ISBN: 0387197303;
Books 105
http://www.amazon.com/exec/obidos/ASIN/0387197303/icongroupin terna ·
Contemporary Diagnosis & Management of Ulcerative Colitis & Proctitis by Mark A. Peppercorn (1995); ISBN: 1884065082; http://www.amazon.com/exec/obidos/ASIN/1884065082/icongroupin terna
·
Crohn's Disease & Ulcerative Colitis by Fred Saibil, Fredric G. Saibil (1997); ISBN: 1552091147; http://www.amazon.com/exec/obidos/ASIN/1552091147/icongroupin terna
·
Managing Your Childs Crohns Disease and Ulcerative Colitis by Keith Benkov, Harland Winter (1997); ISBN: 1571010238; http://www.amazon.com/exec/obidos/ASIN/1571010238/icongroupin terna
The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “ulcerative colitis” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:23 ·
Angry gut: coping with colitis and Crohn's disease. Author: W. Grant Thompson; Year: 1993; New York: Plenum Press, c1993; ISBN: 0306444704 http://www.amazon.com/exec/obidos/ASIN/0306444704/icongroupin terna
·
Colitis. Author: Michael P. Kelly; Year: 1992; London; New York, NY: Tavistock/Routledge, 1992; ISBN: 0415038391
In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.
23
106 Ulcerative Colitis
http://www.amazon.com/exec/obidos/ASIN/0415038391/icongroupin terna ·
Contemporary diagnosis and management of ulcerative colitis and proctitis. Author: Mark A. Peppercorn; Year: 2001; Newtown, Pa.: Handbooks in Health Care, c2001; ISBN: 1884065449
·
Crohn's disease and ulcerative colitis: surgical management. Author: Devinder Kumar and John Alexander-Williams; [with contributions from R.N. Allan]; Year: 1993; London; New York: Springer-Verlag, c1993; ISBN: 3540197303 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3540197303/icongroupin terna
·
Diseases of the colon and rectum: with self-assessment workbook: ulcerative colitis, granulomatous colitis, diverticular diseases of colon, cancer of colon and rectum. Author: Him-che Yeung; Year: 1993; Rosemead, CA: Institute of Chinese Medicine, c1993; ISBN: 0963971506 http://www.amazon.com/exec/obidos/ASIN/0963971506/icongroupin terna
·
Dysplasia and cancer in colitis. Author: edited by Robert H. Riddell; sponsored by the Crohn's & Colitis Foundation of America, Inc. (formerly the National Foundation for Ileitis and Colitis, Inc.), the National Institutes of Health, the RebeccaMeyerhoff Philan; Year: 1991; New York: Elsevier, c1991; ISBN: 0444015701 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0444015701/icongroupin terna
·
Long term management of ulcerative colitis: proceedings of the Nanna Svartz Symposium at the 7th World Congress of Gastroenterology, Stockholm, June 17, 1982. Author: edited by R.G. Farmer; Year: 1983; Oslo: Universitetsforlaget, 1983
·
Mucosal ulcerative colitis. Author: edited by David G. Jagelman; Year: 1986; Mount Kisco, N.Y.: Futura Pub. Co., 1986; ISBN: 0879932449 http://www.amazon.com/exec/obidos/ASIN/0879932449/icongroupin terna
·
Ulcerative colitis and Crohn's disease: a clinicians's guide. Author: by D.P. Jewell, R.W.G. Chapman, N. Mortensen; Year: 1992; Edinburgh; New York: Churchill Livingstone, 1992; ISBN: 0443048037 http://www.amazon.com/exec/obidos/ASIN/0443048037/icongroupin terna
·
Ulcerative colitis. Author: editor, Colm A. O'Morain; Year: 1991; Boca Raton: CRC Press, c1991; ISBN: 0849354986 http://www.amazon.com/exec/obidos/ASIN/0849354986/icongroupin terna
Books 107
·
Workshop Cancer Risk in Ulcerative Colitis: at the 8th World Congress of Gastroenterology: São Paulo, 7-12 September 1986, Brazil. Author: edited by Göran Hellers; Year: 1988; Uppsala: Upplands Grafiska, 1988
Chapters on Ulcerative Colitis Frequently, ulcerative colitis will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with ulcerative colitis, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and ulcerative colitis using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “ulcerative colitis” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on ulcerative colitis: ·
Coexistence of Inflammatory Bowel Disease and Irritable Bowel Syndrome Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 87-90. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on the coexistence of irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and ulcerative colitis (UC), together known as IBD. Irritable bowel syndrome (IBS) is a chronic abdominal symptom complex for which no structural underlying abnormality can be demonstrated. It is a common disorder that affects all age groups with an increased frequency in females. Few if any of the clinical features of IBS can confidently distinguish it from IBD. The multiplicity and chronicity of symptoms and their relationship to altered bowel habit can be helpful hints. A psychoneurotic disposition, evidence of anxiety or depression, and a tendency to somatize symptoms referable
108 Ulcerative Colitis
not only to the gut but other organ systems are pointers in favor of IBS. However, when IBS occurs in a patient with established IBD, this can be a difficult diagnosis. Since IBS is a very common disorder, it is not unexpected to find patients with both IBS and IBD. The author considers whether there is a special relationship between these two disorders. There is good scientific evidence that inflammation of the gut alters its physiologic performance, and this may persist after resolution of the inflammation. The author concludes that IBS occurs with greater frequency in certain patients in remission from IBD, and this is more easily seen in UC than in CD. Symptoms of IBS in the context of IBD are no different from those typical for that condition. An awareness of this relationship is of key importance in making a confident diagnosis, as is a good knowledge of the patients' history and the characteristic behavior of their IBD. In some complicated IBD patients, extensive investigation by colonoscopy with or without small bowel radiography may be required. For most patients, treatment of IBS should follow the usual guidelines with notable exceptions in the case of patients with histories of obstruction. 1 figure. 17 references. ·
Coexistent Irritable Bowel Syndrome and Inflammatory Bowel Disease Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 91-94. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This second chapter on the coexistence of irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and ulcerative colitis (UC), together known as IBD. Irritable bowel syndrome (IBS) is a chronic abdominal symptom complex for which no structural underlying abnormality can be demonstrated. It is a common disorder that affects all age groups with an increased frequency in females. Few if any of the clinical features of IBS can confidently distinguish it from IBD. This chapter focuses on the prevalence of IBS, clinically relevant pathophysiology, and the importance of the patient-physician relationship. The author notes that there are several pathophysiologic alterations found in the small bowel and colon of patients with IBS that could be aggravated or brought to the level of clinical awareness by IBD
Books 109
or its treatment. These alterations include pain or diarrhea after ileo-right colon resection (removal); active proctosigmoiditis; ileal pouch procedures; and an exaggeration of the patient's response to secretagogues, including caffeine and problems with lactose intolerance. The author emphasizes the benefits of explaining to the patient with both IBS and IBD the fact that she or he has two different disorders and that each may cause its own symptoms. Explaining the pathophysiology seems to help the patient adjust medications and understand and accept symptoms caused by meals or by stress. 6 references. ·
Therapeutic Expectations: Medical Management of Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 111-113. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on the medical management of ulcerative colitis is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and ulcerative colitis (UC), together known as inflammatory bowel disease (IBD). The author stresses that therapeutic expectations for UC must take into consideration the chronic, medically incurable nature of inflammatory bowel disease (IBD), the varied mucosal extent, potential severity, and disease or therapy related complications. It is most useful to consider the therapeutic expectations with regard to inducing remission, maintaining remission, treating symptoms, and treating or preventing complications. Ulcerative colitis can be complicated by intestinal or extraintestinal complications. Intestinal complications, such as bleeding and associated anemia, hypoproteinemia, or electrolyte abnormalities require prompt control with inductive therapies. Thereafter, supplementation with iron and folic acid (with sulfasalazine) should treat and prevent further development of anemia during maintenance therapy. Other intestinal complications, such as toxic megacolon or perforation, can be prevented with aggressive inductive therapies, according to the severity of presentation. Patients should be warned against the use of NSAIDs and to alert their physician when primary care physicians or other specialists prescribe antibiotics or other medications, to be certain they do not induce diarrhea (Clostridium difficile) and are compatible with UC therapy. Controlling colonic inflammation usually prevents
110 Ulcerative Colitis
extraintestinal complications, such as peripheral arthritis and cutaneous manifestations. In addition, with the advent of pelvic pouch procedures, an additional goal of medical therapy is to treat, and eventually prevent, pouchitis. This chapter serves as an introduction to a section of 12 chapters on UC. 6 references. ·
Sequential and Combination Therapy of Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 115-118. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on the drug therapy of ulcerative colitis is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and ulcerative colitis (UC), together known as inflammatory bowel disease (IBD). UC is a chronic inflammatory disease of unknown cause and incurable with current medications. For palliation, the clinician must choose from an array of oral, per-rectal, and intravenous treatments with many dosing options. The medications, doses, and routes of delivery for treatment of active disease may be different from those used for maintenance of remission. Initial treatment of every patient with one drug at a single dose and delivery route (sequential therapy) is the traditional and least complicated way for clinicians and patients to judge the effectiveness and tolerability of a treatment. The compliance with using a single drug is likely to be better than with multiple drugs or delivery routes and the cost probably will be less. If the initial treatment is not effective or tolerable, then the dose can be adjusted, with or without starting other drugs. The main drawback to sequential therapy is that the trial and error method of adding medications may prolong the time to response, compared to starting multiple drugs together, so this approach is most attractive for mildly active disease when controlling symptoms quickly is less critical. Starting multiple treatments at once, either with the same drug or by different delivery routes, or using two or more drugs (combination therapy) may give a combined effect with more prompt onset of action and better efficacy than starting with a single drug and adding others later. The approach is most commonly used for moderate or severe disease when there is urgency to get the symptoms controlled promptly. Drawbacks to combination therapy are the lack of
Books 111
data from controlled trials to confirm the benefits, difficulty identifying the offending drug if an adverse effect occurs with multiple drug therapy, lower patient compliance, and probably higher cost. 2 tables. 7 references. ·
Ulcerative Colitis: A Diverse Disease with Diverse Questions and Diverse Solutions Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 119-121. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on ulcerative colitis is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and ulcerative colitis (UC), together known as inflammatory bowel disease (IBD). The author notes that clinicians think of UC as one disease, but it is, in fact, a blend of several conditions whose final common denominator is diffuse inflammation of the colon associated with distortion of crypts on microscopic examination. Clinicians move from one therapy for colitis to another as if UC is a spectrum. First, 5 ASA is tried for one type of UC; if this therapy fails, corticosteroids, either local or systemic, follow for what unspokenly is another type of UC. 6-Mercaptopurine or azathioprine enters therapy for a third type of UC and, finally, surgery cures all. The author discusses the different types of therapy and also considers the cancer risk in patients with UC; surveillance of inflamed colons by means of periodic colonoscopy is the standard of care to address the latter. The author concludes that UC presents, responds to therapy, and has a natural history that suggests that it is a spectrum. The host, the luminal environment, the mucosal border, and the immune system of the lamina propria and vascular walls participate in molding this spectrum. Clinical trials that approach UC with these distinct participants in mind may yield more success than outcomes obtained in the past two decades. 10 references.
·
Aminosalicylates Therapy for Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 123-126.
112 Ulcerative Colitis
Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on aminosalicylates therapy for ulcerative colitis is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and ulcerative colitis (UC), together known as inflammatory bowel disease (IBD). The author cautions that careful attention is necessary in interpreting clinical trials of the aminosalicylates in UC, because of variations in its indications (active disease versus maintenance), therapeutic end points and indices, and duration of treatment. Oral aminosalicylates are the primary maintenance therapy to prevent relapse of colitis after remission has been achieved. There are practical considerations that differentiate sulfasalazine from the non sulfa containing aminosalicylates. There is dose-related efficacy for the maintenance effects of all oral aminosalicylates. With sulfasalazine, the maintenance dose of 2 grams per day is often selected as the best 'balance' between efficacy and side effects. This has led to previous recommendations to reduce the active dose down to 2 grams per day as a maintenance dose. Unfortunately, this precludes use of a more efficacious maintenance dose. In contrast, in the absence of dose-related side effects with mesalamine, the optimal maintenance dose (with respect to efficacy) is the same as the inductive dose. The only constraints are cost and patient compliance. Typically, administration of oral aminosalicylates on a twice-daily schedule is recommended, to enhance compliance. Because of variations in gastric emptying and colonic motility among patients, there is no rationale to require administration of oral mesalamine compounds in more than two doses per day. 10 references. ·
Immunomodulators in Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 139-142. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on the use of immunomodulators for treating ulcerative colitis is from the second edition of a book devoted to the
Books 113
details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and ulcerative colitis (UC), together known as inflammatory bowel disease (IBD). The immunomodulators, 6mercaptopurine (6-MP), azathioprine (AZA), and cyclosporin A (CSA), are of value in the management of UC patients who are dependent on, or refractory to, oral steroids. CSA is effective as a short-term intravenous (IV) and oral agent for achieving remission in patients with severe colitis refractory to IV steroids. 6-Mercaptopurine and AZA, but not CSA, also are effective as maintenance agents for patients who have required steroids, 6-MP/AZA, or CSA to achieve remission. The author reviews the indications (patient selection), how to initiate therapy, daily monitoring (including monitoring for toxicity), and assessment of the patient for each of these immunomodulating drugs. 9 references. ·
Management of Severe Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 143-147. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: Severe or fulminant ulcerative colitis (UC) is a potentially fatal disease that was associated with a 30 percent mortality rate prior to the introduction of corticosteroids and, in steroid-refractory cases, early surgery. During recent years, the trend has changed from saving lives to improving the quality of life of patients by saving colons or using modern surgical methods. This chapter on the management of severe UC is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and UC, together known as inflammatory bowel disease (IBD). The author discusses the etiology, differential diagnosis, and definition of severe UC. Patients with definite or strongly suspected severe colitis must be admitted to the hospital for intensive treatment. The mainstay of the medical treatment is corticosteroids, taken orally with nothing except small sips of water, and total parenteral nutrition (TPN, outside the gastrointestinal tract). Usually, corticosteroids are administered intravenously in severe colitis, but even in acute colitis, corticosteroids given orally are absorbed completely but somewhat more slowly than those administered intravenously. Colonoscopy, rather than food challenge, is relied on to improve decision making in patients with
114 Ulcerative Colitis
incomplete or poor response to treatment. The author discusses the indications for using antibiotics, 5 aminosalicylic acid (5 ASA), and immunosuppressives. Beyond the drug therapy, the patient must be monitored carefully. Three or 4 days after initiating therapy, a sigmoidoscopy is of further help in monitoring the response and a biopsy helps to rule out cytomegalovirus. Assessment of response is made mainly on clinical and laboratory grounds, although repeat plain abdominal radiography during ongoing treatment can show signs of impending perforation or definite toxic dilatation that requires surgery. 1 table. 10 references. ·
Use of Antibiotics and Other Anti-infectious Agents in Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 149-151. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on the use of antibiotics and other anti infectious agents in ulcerative colitis (UC) is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and UC, together known as inflammatory bowel disease (IBD). Abundant evidence suggests that an imbalance between luminal (in the intestines) bacteria and the host inflammatory and immune response plays a central role in the pathogenesis (development) of inflammatory bowel disease (IBD). Development of UC has been observed after enteric (through the gastrointestinal tract) infection with Salmonella, Shigella, and Yersinia species. While these specific pathogens are not considered etiologic (causative) agents of UC, a transient infection may initiate a cascade of inflammatory events that, in predisposed individuals, can lead to UC. Similarly, although many enteric pathogens have been associated with relapse of UC, there is no evidence that persistence of these infections is a cause of the disease. In recent UC clinical trials, administration of live non-pathogenic Escherichia coli or a mixture of bifidobacteria, lactobacilli, and streptococci was equivalent to mesalamine in maintenance of remission. Taken together, these data suggest that the beneficial effect of antibiotics may not result from a long-term reduction in total bacterial load but rather from a qualitative alteration of the
Books 115
resident bacterial population. The recent human data further suggest a role for probiotics in the maintenance therapy for UC patients. This topic is also discussed in the chapter on the role of bacteria in CD and the chapter on pouchitis. The authors note that the lack of antibiotic benefits in randomized trials should not completely preclude their use in the management of selected UC patients. In clinical practice, these drugs may benefit patients with an acute flare of the disease, toxic patients with or without megacolon, and subsets of patients with refractory disease. 11 references. ·
Management of Ulcerative Colitis in Children Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 153-155. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on the management of ulcerative colitis (UC) in children is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and UC, together known as inflammatory bowel disease (IBD). Inflammatory bowel diseases (IBDs) in children are chronic illnesses with symptoms that wax and wane. Although some children may experience a prolonged remission, many have recurrent exacerbations that require ongoing medical evaluation and therapy. In a recent study, children with UC were diagnosed more rapidly than children with CD; however, in both diseases, a significant time elapsed prior to the start of effective therapy. This delay of over 6 months from the time of onset of symptoms to initiation of treatment indicates that more awareness of these diseases is needed among primary care providers. Quality of life is reduced in children with IBD; pediatric gastroenterologists should be aware of the typical psychological patterns in these patients and integrate psychosocial support into the treatment plan. Deciding which medication to use to induce remission in a child with new-onset UC depends on the severity of the disease. Children who have mild disease characterized by bloody diarrhea or abdominal cramps, without fever, anemia, or hypoalbuminemia, usually respond to sulfasalazine, mesalamine, or olsalazine. About 70 percent of children with moderate to severe disease require corticosteroids in the first year of treatment. Characteristics of moderate to severe disease include more
116 Ulcerative Colitis
than six bloody stools daily, abdominal cramps, awakening at night to defecate, fever, anemia, or hypoalbuminemia (low levels of protein in the blood). The decision to perform a colectomy (removal of part of the colon) in a child with UC should be made by the patient, family, and health care providers all working together to reach consensus. As surgical techniques improve and more is learned about the adaptation of pouches in growing children, patients and providers will be better prepared with information upon which to base a decision. The risks of using potent immunosuppressive agents must be balanced against the potential complications of surgery and the possibility for cure. 1 table. 8 references. ·
Dietary Recommendations for Active and Inactive Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 161-164. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on dietary recommendations for active and inactive ulcerative colitis (UC) is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and UC, together known as inflammatory bowel disease (IBD). This chapter discusses the role of diet and nutritional support in ulcerative colitis (UC) in which the catabolic effect (breakdown or loss of body tissue) of inflammation, impaired nutrient absorption, and gastrointestinal (GI) dysfunction can rapidly lead to malnutrition. Inactive UC is a chronic disorder and may be associated with malnutrition, specific elemental deficiencies, and specific food intolerances. Patients may not eat enough to meet their nutritional requirements because of anorexia, drug side effects (eg, nausea, headache, and anorexia), food-induced diarrhea, or pain. In lactose intolerant people, production of hydrogen produces bloating, nausea, and flatulence and unabsorbed short-chain fatty acids produce diarrhea. Lactose intolerance may be primary (racial or congenital) or secondary (eg, due to bacterial overgrowth or intestinal mucosal disease or injury). The incidence of UC is not increased in lactose intolerant people, and the incidence of lactose intolerance is not increased in patients with UC. In UC in remission, lactose restriction is important to control symptoms only in those patients documented to have lactose intolerance,
Books 117
presumably on a genetic basis. Active UC involves pathologic and physiologic changes both within the colonic mucosa and systemically. The colonic mucosa is inflamed and associated with loss of fluid, electrolytes, proteins and immunoglobulins, albumin (protein), and hemoglobin (red blood cells). Systemic manifestations of fever and anorexia are associated with reduced oral intake of nutrients. However, the body is in a catabolic state, with increased nutritional requirements and increased energy needs as a result of fever, associated infections, and steroid therapy. In these situations, nutritional support is essential. In such cases, parental or enteral nutrition not only may be of value but may be essential in patient management. 2 tables. 10 references. ·
Therapeutic Expectations: Surgical Management of Ulcerative Colitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 171-173. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on the surgical management of ulcerative colitis (UC) is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and UC, together known as inflammatory bowel disease (IBD). This chapter focuses on what patients can expect after surgery for medically refractory (not responsive to drug therapy) UC. Almost all patients will be better off after operation than before operation. The operation is safe. Their colitis will be 'cured,' their colitis medications will be discontinued, and their intestinal symptoms will subside. Their physiologic and social functions will generally be preserved or improved, and a feeling of good health and a satisfactory quality of life will return. However, the outcome may not be perfect, and long-term complications can occur. Physicians do their best to achieve an excellent outcome and avoid complications, while providing compassionate, cost-effective, surgical care. Currently, most patients who undergo elective surgery for ulcerative colitis have a proctocolectomy and an ileal pouch-anal canal anastomosis (IPAA). In IPAA, the entire disease colon and rectum are removed, but the anal sphincters are preserved. A new rectum is formed from the terminal ileum (ileal pouch); attaching the pouch to the anal canal restores defecation to the standard transanal route with satisfactory fecal continence. However, proctocolectomy and Brooke ileostomy,
118 Ulcerative Colitis
proctocolectomy and continent ileostomy (Kock pouch), and colectomy and ileorectostomy still are used, and are also explained to the patient. Indeed, these operations still are the operations of choice for selected patients. 6 references. ·
Stricture Management in Primary Sclerosing Cholangitis Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 303-304. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on stricture management in primary sclerosing cholangitis is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and Ulcerative Colitis (UC), together known as inflammatory bowel disease (IBD). Sclerosing cholangitis is a cholestatic liver disorder characterized by diffuse strictures (scar tissue causing a narrowing) of the bile ducts. The disorder may be primary (idiopathic) or secondary due to structural abnormalities of the bile ducts. Primary sclerosing cholangitis (PSC) is clinically indistinguishable from disorders that cause secondary sclerosing cholangitis. There is a strong association of PSC and IBD, particularly ulcerative colitis. Approximately 4 percent of patients with IBD will either have or develop PSC. The mainstay of treatment of PSC is liver transplantation with survival rates of greater than 80 percent at 5 years posttransplant. The author cautions that the use of other palliative treatment options such as endoscopic, nontransplant surgical or radiologic interventions should be evaluated in the context of the effectiveness of liver transplantation. The concern of underlying cholangiocarcionoma (biliary tract cancer) should be a priority when evaluating and treating these strictures. 11 references.
·
Pancreatitis in Inflammatory Bowel Disease Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 329-332. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website:
Books 119
www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on pancreatitis is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with Crohn's disease (CD) and Ulcerative Colitis (UC), together known as inflammatory bowel disease (IBD). There is a higher incidence and prevalence of pancreatitis in patients with inflammatory bowel disease (IBD) than in the general population. The pancreatitis can be acute or chronic, or subclinical or overt, and has many causes. The most common cause is medications used to treat IBD, especially azathioprine and 6 mercaptopurine. Other causes of pancreatitis include duodenal involvement from Crohn's disease (CD), gallstones (cholelithiasis), and primary sclerosing cholangitis (PSC). Pancreatitis also can be caused by high serum concentrations of triglycerides during total parenteral nutritional (TPN) therapy for CD, and may also be a primary extra-intestinal manifestation of IBD. Treatment is different for each cause. For drug-induced pancreatitis, discontinuation of the drug should improvethe pancreatitis. For TPNinduced pancreatitis, oral medium-chain triglycerides should be substituted for the lipid emulsion. For pancreatitis that has developed from gallstones, the usual treatment is laparoscopic cholecystectomy (removal of the gallbladder). Idiopathic (of unknown cause) pancreatitis is often successfully treated by treating the underlying IBD. 1 table. 10 references. ·
Gastroduodenal Crohn's Disease Source: in Bayless, T.M. and Hanauer, S.B. Advanced Therapy of Inflammatory Bowel Disease. Hamilton, Ontario: B.C. Decker Inc. 2001. p. 421-423. Contact: Available from B.C. Decker Inc. 20 Hughson Street South, P.O. Box 620, L.C.D. 1 Hamilton, Ontario L8N 3K7. (905) 522-7017 or (800) 5687281. Fax (905) 522-7839. Email:
[email protected]. Website: www.bcdecker.com. Price: $129.00 plus shipping and handling. ISBN: 1550091220. Summary: This chapter on gastroduodenal Crohn's disease (CD) is from the second edition of a book devoted to the details of medical, surgical, and supportive management of patients with CD and ulcerative colitis (UC), together known as inflammatory bowel disease (IBD). Patients with gastroduodenal Crohn's disease often present with symptoms indistinguishable from those of peptic ulcer or drug therapy including 5aminosalicylic acid (5-ASA) drugs, prednisone, and 6-mercaptopurine (6MP) or azathioprine. These symptoms include postprandial (after a meal)
120 Ulcerative Colitis
pain and nausea and may progress to more continuous pain associated with nausea and vomiting, indicating the presence of gastric outlet obstruction secondary to gastroduodenal stricture formation. The two most helpful endoscopic observations in diagnosing gastroduodenal CD are the absence of duodenal ulceration and the presence of notching of Kerckring's folds in the duodenum in a patient with upper GI symptoms. Most patients with Crohn's disease do not need specific medical management of their gastroduodenal CD. Treatment of the Crohn's disease should be based on the severity of the patient's overall symptoms with 5-ASA drugs, immunomodulatory therapy (6-MP or aza-thioprine), antibiotics, and judicious use of corticosteroids as indicated. Before using corticosteroids, effort should be made to ensure that the patient's upper GI symptoms are not due to nonsteroidal anti-inflammatory drugs (NSAIDs) or to medical therapy for CD. Intermittent or persistent upper GI discomfort or nausea can occur with sulfasalazine, 5-ASA, 6-MP, or azathioprine, as well as from metronidazole. Before using corticosteroids, one should attempt to decrease or even temporarily withdraw the primary drug therapy for CD to determine if one of these medications is the offending agent. Surgery for gastroduodenal CD usually is reserved for patients with clinically significant gastric (stomach) outlet obstruction.
Directories In addition to the references and resources discussed earlier in this chapter, a number of directories relating to ulcerative colitis have been published that consolidate information across various sources. These too might be useful in gaining access to additional guidance on ulcerative colitis. The Combined Health Information Database lists the following, which you may wish to consult in your local medical library:24 ·
Complete Directory for People with Chronic Illness. 4rd ed Source: Lakeville, CT: Grey House Publishing, Inc. 2000. 1047 p.
You will need to limit your search to “Directories” and ulcerative colitis using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find directories, use the drop boxes at the bottom of the search page where “You may refine your search by”. For publication date, select “All Years”, select language and the format option “Directory”. By making these selections and typing in “ulcerative colitis” (or synonyms) into the “For these words:” box, you will only receive results on directories dealing with ulcerative colitis. You should check back periodically with this database as it is updated every three months.
24
Books 121
Contact: Available from Grey House Publishing, Inc. Pocket Knife Square, Lakeville, CT 06039. (860) 435-0868. Fax (860) 435-0867. Price: $165.00. ISBN: 0939300931. Summary: This directory provides a comprehensive overview of the support services and information resources available for people with any of 80 specific chronic illnesses. It presents information on various organizations, educational materials, publications, and databases. A chapter is devoted to each chronic illness and includes a brief description of it. The digestive diseases covered include celiac disease, Crohn's disease, gastrointestinal disorders, hepatitis, liver disease, substance abuse, and ulcerative colitis. The description of each disease is followed by subchapters that identify national and State associations and agencies, libraries, research centers, reference books, children's books, magazines, newsletters, pamphlets, videotapes and films, support groups and hotlines, and websites. In addition, the directory includes a chapter on death and bereavement, as well as a chapter on Wish Foundations for terminally and chronically ill children.
General Home References In addition to references for ulcerative colitis, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · The Digestive System (21st Century Health and Wellness) by Regina Avraham; Library Binding (February 2000), Chelsea House Publishing (Library); ISBN: 0791055264; http://www.amazon.com/exec/obidos/ASIN/0791055264/icongroupinterna · American College of Physicians Complete Home Medical Guide (with Interactive Human Anatomy CD-ROM) by David R. Goldmann (Editor), American College of Physicians; Hardcover - 1104 pages, Book & CD-Rom edition (1999), DK Publishing; ISBN: 0789444127; http://www.amazon.com/exec/obidos/ASIN/0789444127/icongroupinterna · The American Medical Association Guide to Home Caregiving by the American Medical Association (Editor); Paperback - 256 pages 1 edition (2001), John Wiley & Sons; ISBN: 0471414093; http://www.amazon.com/exec/obidos/ASIN/0471414093/icongroupinterna
122 Ulcerative Colitis
· Anatomica : The Complete Home Medical Reference by Peter Forrestal (Editor); Hardcover (2000), Book Sales; ISBN: 1740480309; http://www.amazon.com/exec/obidos/ASIN/1740480309/icongroupinterna · The HarperCollins Illustrated Medical Dictionary : The Complete Home Medical Dictionary by Ida G. Dox, et al; Paperback - 656 pages 4th edition (2001), Harper Resource; ISBN: 0062736469; http://www.amazon.com/exec/obidos/ASIN/0062736469/icongroupinterna · Mayo Clinic Guide to Self-Care: Answers for Everyday Health Problems by Philip Hagen, M.D. (Editor), et al; Paperback - 279 pages, 2nd edition (December 15, 1999), Kensington Publishing Corp.; ISBN: 0962786578; http://www.amazon.com/exec/obidos/ASIN/0962786578/icongroupinterna · The Merck Manual of Medical Information : Home Edition (Merck Manual of Medical Information Home Edition (Trade Paper) by Robert Berkow (Editor), Mark H. Beers, M.D. (Editor); Paperback - 1536 pages (2000), Pocket Books; ISBN: 0671027263; http://www.amazon.com/exec/obidos/ASIN/0671027263/icongroupinterna
Vocabulary Builder Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Algorithms: A procedure consisting of a sequence of algebraic formulas and/or logical steps to calculate or determine a given task. [NIH] Anorexia: Lack or loss of the appetite for food. [EU] Ascites: Effusion and accumulation of serous fluid in the abdominal cavity; called also abdominal or peritoneal dropsy, hydroperitonia, and hydrops abdominis. [EU] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Bereavement: Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. [NIH] Bezoars: Concretions of swallowed hair, fruit or vegetable fibers, or similar substances found in the alimentary canal. [NIH] Caustic: An escharotic or corrosive agent. Called also cauterant. [EU] Cholecystectomy: Surgical removal of the gallbladder. [NIH] Cholelithiasis: The presence or formation of gallstones. [EU] Cytomegalovirus:
A genus of the family herpesviridae, subfamily
Books 123
betaherpesvirinae, infecting the salivary glands, liver, spleen, lungs, eyes, and other organs, in which they produce characteristically enlarged cells with intranuclear inclusions. Infection with Cytomegalovirus is also seen as an opportunistic infection in AIDS. [NIH] Dilatation: The condition, as of an orifice or tubular structure, of being dilated or stretched beyond the normal dimensions. [EU] Disposition: A tendency either physical or mental toward certain diseases. [EU]
Diverticulitis: Inflammation of a diverticulum, especially inflammation related to colonic diverticula, which may undergo perforation with abscess formation. Sometimes called left-sided or L-sides appendicitis. [EU] Dyspepsia: Impairment of the power of function of digestion; usually applied to epigastric discomfort following meals. [EU] Elective: Subject to the choice or decision of the patient or physician; applied to procedures that are advantageous to the patient but not urgent. [EU] Encephalopathy: Any degenerative disease of the brain. [EU] Encopresis: Incontinence of feces not due to organic defect or illness. [NIH] Escherichia: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria whose organisms occur in the lower part of the intestine of warmblooded animals. The species are either nonpathogenic or opportunistic pathogens. [NIH] Esophagitis: Inflammation, acute or chronic, of the esophagus caused by bacteria, chemicals, or trauma. [NIH] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Flatulence: The presence of excessive amounts of air or gases in the stomach or intestine, leading to distention of the organs. [EU] Gastroduodenal: Pertaining to or communicating with the stomach and duodenum, as a gastroduodenal fistula. [EU] Gastroenteritis: An acute inflammation of the lining of the stomach and intestines, characterized by anorexia, nausea, diarrhoea, abdominal pain, and weakness, which has various causes, including food poisoning due to infection with such organisms as Escherichia coli, Staphylococcus aureus, and Salmonella species; consumption of irritating food or drink; or psychological factors such as anger, stress, and fear. Called also enterogastritis. [EU] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Hepatic: Pertaining to the liver. [EU] Hepatocellular: Pertaining to or affecting liver cells. [EU]
124 Ulcerative Colitis
Hernia: (he protrusion of a loop or knuckle of an organ or tissue through an abnormal opening. [EU] Hydrogen: Hydrogen. The first chemical element in the periodic table. It has the atomic symbol H, atomic number 1, and atomic weight 1. It exists, under normal conditions, as a colorless, odorless, tasteless, diatomic gas. Hydrogen ions are protons. Besides the common H1 isotope, hydrogen exists as the stable isotope deuterium and the unstable, radioactive isotope tritium. [NIH] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU]
Malabsorption: Impaired intestinal absorption of nutrients. [EU] Megacolon: An abnormally large or dilated colon; the condition may be congenital or acquired, acute or chronic. [EU] Palliative: 1. affording relief, but not cure. 2. an alleviating medicine. [EU] Parasitic: Pertaining to, of the nature of, or caused by a parasite. [EU] Parenteral: Not through the alimentary canal but rather by injection through some other route, as subcutaneous, intramuscular, intraorbital, intracapsular, intraspinal, intrasternal, intravenous, etc. [EU] Peptic: Pertaining to pepsin or to digestion; related to the action of gastric juices. [EU] Peritonitis: Inflammation of the peritoneum; a condition marked by exudations in the peritoneum of serum, fibrin, cells, and pus. It is attended by abdominal pain and tenderness, constipation, vomiting, and moderate fever. [EU] Physiologic: Normal; not pathologic; characteristic of or conforming to the normal functioning or state of the body or a tissue or organ; physiological. [EU]
Postprandial: Occurring after dinner, or after a meal; postcibal. [EU] Reflux: A backward or return flow. [EU] Resection: Excision of a portion or all of an organ or other structure. [EU] Salmonella: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria that utilizes citrate as a sole carbon source. It is pathogenic for humans, causing enteric fevers, gastroenteritis, and bacteremia. Food poisoning is the most common clinical manifestation. Organisms within this genus are separated on the basis of antigenic characteristics, sugar fermentation patterns, and bacteriophage susceptibility. [NIH] Sphincter: A ringlike band of muscle fibres that constricts a passage or closes a natural orifice; called also musculus sphincter. [EU] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become
Books 125
apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Yersinia: A genus of gram-negative, facultatively anaerobic rod- to coccobacillus-shaped bacteria that occurs in a broad spectrum of habitats. [NIH]
Multimedia 127
CHAPTER 6. MULTIMEDIA ON ULCERATIVE COLITIS Overview Information on ulcerative colitis can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on ulcerative colitis. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.
Video Recordings Most diseases do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on ulcerative colitis is the Combined Health Information Database. You will need to limit your search to “video recording” and “ulcerative colitis” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “ulcerative colitis” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on ulcerative colitis:
128 Ulcerative Colitis
·
Ulcerative Colitis: The Disease and Enema Therapy Source: Marietta, GA: Solvay Pharmaceuticals, Inc. 1996. (videocassette). Contact: Available from Solvay Pharmaceuticals, Inc. 901 Sawyer Road, Marietta, GA 30062. (800) 354-0026. Price: Single copy free. Summary: This videotape program provides information and reassurance for people recently diagnosed with ulcerative colitis (UC). The program notes that UC can have a great impact on a person's life, but that following the prescribed treatment can help relieve symptoms and return a sense of normalcy. The narrator reviews the possible causes of UC, including genetic, infectious, and autoimmune theories, noting that UC is not contagious or caused by stress or food sensitivity. UC is most often found in the developing world, and people are usually diagnosed in their teens or twenties. The program then features brief interviews with six women who describe how they felt when they first received the diagnosis. Reactions ranged from fear and anxiety to relief that they finally had a name for their symptoms. The narrator then lists the common symptoms of UC: diarrhea, rectal bleeding, bloody stool, loss of appetite, anemia, abdominal pain, weight loss, fever, and gas (flatulence). Less common symptoms can include joint pain, skin lesions, and eye inflammation. The program then features a man and two women talking about symptoms, particularly urgency and frequency, and the impact of these symptoms on their lifestyles. The narrator notes that there are rectal agents, oral medications, antibiotics, and combination therapies, but that the video will focus on enema therapy. The program then interviews three patients who use Rowasa (mesalamine in a rectal suspension enema form). The patients talk about enema therapy and the improved quality of life they have found using this form of the drug. The program then uses line drawings to demonstrate how to give oneself an enema. The medication should be given when the patient can stay prone for 30 minutes or, preferably, overnight. The program concludes by encouraging viewers to ask their health care provider to answer any questions they may have. The address and tollfree telephone number (800-343-3637) of the Crohn's and Colitis Foundation of America are also provided.
·
What You Really Need to Know About Ulcerative Colitis Source: [Toronto, Ontario, Canada]: Videos for Patients. 1993. (videocassette). Contact: Available from Medical Audio Visual Communications, Inc. Suite 240, 2315 Whirlpool Street, Niagara Falls, NY 14305. Or P.O. Box 84548, 2336 Bloor Street West, Toronto, Ontario M6S 1TO, Canada. (800)
Multimedia 129
757-4868 or (905) 602-1160. Fax (905) 602-8720. Price: $99.00 (Canadian); contact producer for current price in American dollars. Order Number VFP001. Summary: This patient education videotape provides information about ulcerative colitis. The videotape begins with a brief sketch featuring comedian John Cleese and narrator Dr. Robert Buckman illustrating the difficulties sometimes experienced by patients during the traditional doctor's explanation. Topics include a definition of ulcerative colitis (UC); how UC develops; symptoms of UC; classification of UC as mild, moderate, or severe; the advantages and disadvantages of various treatment options, including medications; how and when surgical treatment may be indicated; and how to recognize severe attacks of ulcerative colitis. Dr. Buckman presents the medical facts, using models, simple diagrams, and graphics to supplement his explanation, and avoiding medical jargon as much as possible. ·
Approach to the Patient with Chronic Diarrhea Source: Secaucus, NJ: Network for Continuing Medical Education (NCME). 1993. Contact: Available from NCME. One Harmon Plaza, Secaucus, NJ 07094. (800) 223-0272 or, in New Jersey, (800) 624-2102, or (201) 867-3550. Price: $20 for 2-week rental or $50 for purchase. Available only to NCME subscribers; subscriber fees as of 1995 are $1,920 for VHS subscription, $2,120 for U-matic subscription. Summary: In this continuing education program, Dr. Asher Kornbluth guides viewers through the approach to the patient with chronic diarrhea. In the first section, Dr. Kornbluth presents a definition of chronic diarrhea, emphasizes the importance of obtaining a comprehensive, accurate patient history, and reviews the categories of chronic diarrhea, including altered motility, osmotic, inflammatory, secretory, and factitious. He briefly reviews conditions that may cause fecal incontinence, including advanced age, diabetes, and neuromuscular disease, and comments on HIV-associated diarrhea. In the second section, he reviews the diagnostic tests used to confirm the diagnosis, including stool examination tests such as culture and sensitivity; the upper GI series; the use of sigmoidoscopy; and endoscopy. The endoscopic differences between ulcerative colitis and Crohn's disease are demonstrated. Dr. Kornbluth concludes with a discussion of the drug treatments available and the indications for each, including opiates and their derivatives, absorbants, anticholinergic agents, agents for treating inflammatory bowel disease (IBD), and octreotide. The video program confers CME credit. (AA-M).
130 Ulcerative Colitis
Bibliography: Multimedia on Ulcerative Colitis The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in ulcerative colitis (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on ulcerative colitis. For more information, follow the hyperlink indicated: ·
Alternates to a stoma for ulcerative colitis. Source: American College of Surgeons; Year: 1982; Format: Sound recording; [Chicago, Ill.]: The College, [1982]
·
Digestive disorders and irritable bowel syndrome. Source: a presentation of Films for the Humanities & Sciences; Year: 1993; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c1993
·
Diseases of the anus, rectum and colon. Source: Marvin L. Corman ... [et al.]; Year: 1976; Format: Slide; [New York]: Medcom, c1976
·
Early detection and medical management of ulcerative colitis. Source: produced by Sturgis-Grant Productions, Inc.; by Nicholas C. Hightower, Jr., A. Compton Broders, Jr., Henry Laurens, Richard D. Haines; from the Section on Gastroenterology,; Year: 1959; Format: Motion picture; United States: Sturgis-Grant, [1959]
·
Early diagnosis of ulcerative and granulomatous colitis. Source: the Radiological Society of North America; Year: 1983; Format: Slide; [Chicago, Ill.]: The Society, c1983
·
Endorectal pull-through for the management of ulcerative colitis. Source: MSD, Merck, Sharp & Dohme; Year: 1983; Format: Videorecording; [West Point, Pa.]: Merck & Co, c1983
·
Inflammatory bowel disease : diagnosis and management of Crohn's disease and ulcerative colitis. Source: Daniel H. Present; Year: 1998; Format: Videorecording; Clifton, N.J.: Network for Continuing Medical Education, c1998
·
Pediatric surgery : ulcerative colitis and Hirschsprung's disease. Source: American College of Surgeons; Year: 1986; Format: Sound recording; [Chicago, Ill.]: The College, [1986]
Multimedia 131
·
Synchronous combined proctocolectomy for mucosal ulcerative colitis. Source: Videosurgery; Year: 1977; Format: Videorecording; Don Mills, Ont.: Southam Business Publications, c1977
·
Ulcerative colitis & Crohn's disease. Source: presented by the Warren Magnuson Clinical Center, National Institutes of Health, Office of Clinical Reports & Inquiries; a production of AVP Inc; Year: 1985; Format: Videorecording; [Los Angeles, Calif.]: Hospital Satellite Network, c1985
Vocabulary Builder Anticholinergic: An agent that blocks the parasympathetic nerves. Called also parasympatholytic. [EU] Mobilization: The process of making a fixed part or stored substance mobile, as by separating a part from surrounding structures to make it accessible for an operative procedure or by causing release into the circulation for body use of a substance stored in the body. [EU] Neuromuscular: Pertaining to muscles and nerves. [EU] Octreotide: A potent, long-acting somatostatin octapeptide analog which has a wide range of physiological actions. It inhibits growth hormone secretion, is effective in the treatment of hormone-secreting tumors from various organs, and has beneficial effects in the management of many pathological states including diabetes mellitus, orthostatic hypertension, hyperinsulinism, hypergastrinemia, and small bowel fistula. [NIH] Osmotic: Pertaining to or of the nature of osmosis (= the passage of pure solvent from a solution of lesser to one of greater solute concentration when the two solutions are separated by a membrane which selectively prevents the passage of solute molecules, but is permeable to the solvent). [EU]
Periodicals and News 133
CHAPTER 7. PERIODICALS AND NEWS ON ULCERATIVE COLITIS Overview Keeping up on the news relating to ulcerative colitis can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on ulcerative colitis. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover ulcerative colitis beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.
News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on ulcerative colitis is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing.
134 Ulcerative Colitis
PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “ulcerative colitis” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased. The following is typical of press releases that can be found on PR Newswire: ·
Protein Design Labs Begins Phase I Clinical Trial of Nuvion(R) in Ulcerative Colitis Summary: Fremont, Calif., July 9 /PRNewswire-FirstCall/ -- Protein Design Labs, Inc. (PDL) (Nasdaq: PDLI) today announced that it has initiated a Phase I clinical trial to evaluate the safety and tolerability of its humanized antibody Nuvion (visilizumab) in patients with ulcerative colitis. The Phase I, dose-escalation pilot study of visilizumab will be conducted in patients whose ulcerative colitis has failed to respond to steroid therapy. The study is targeted to enroll up to 20 patients at eight centers in the United States. Visilizumab will be administered as one daily intravenous injection administered on two consecutive days at one of four dose levels. Patients will continue to receive steroids according to their current regimen for a period of at least seven days after receiving visilizumab. After seven days, steroid regimens may be continued or tapered. "Increasing evidence implicates T lymphocytes as the primary immune cells mediating the induction and progression of inflammatory bowel disease," said Cary L. Queen, Ph.D., Senior Vice President, PDL. "We believe that an antibody such as visilizumab, which induces apoptosis or programmed cell death of activated T cells, could provide therapeutic benefit in ulcerative colitis. Visilizumab has previously shown evidence of activity in early stage trials in graft-versus-host disease and kidney transplantation, in which steroids also are a concomitant therapy."
Periodicals and News 135
Nuvion is a humanized, monoclonal antibody directed at the CD3 antigen, a component of the T-cell receptor complex. PDL currently is conducting a Phase II clinical trial of Nuvion in steroid-refractory graftversus-host disease (GvHD) and a Phase I/II clinical trial in primary GvHD. PDL previously reported results from a Phase I study of Nuvion in steroid-resistant GvHD in which patients received either seven low daily doses of Nuvion or a single higher dose. The results indicated that doses of up to 3.0 mg/m2 were well tolerated, and that Nuvion achieved a partial and complete response rate of 100%. In the group of 12 patients receiving a single dose at 3.0 mg/m2, seven patients had a complete response and all seven are alive more than one year later. The foregoing contains forward-looking statements involving risks and uncertainties and PDL's actual results may differ materially from those in the forward-looking statements. Factors that may cause such differences are discussed in PDL's Quarterly Report on Form 10-Q for the quarter ended March 31, 2002, and in its Annual Report on Form 10-K for the year ended December 31, 2001, as amended, and in other filings made with the Securities and Exchange Commission. In particular, we may be unable to complete the described trials, and the results of the Phase I trial of visilizumab in steroid-refractory GvHD may not be indicative of the results to be obtained in the Phase I/II trial in primary GvHD, or in the Phase II trial in steroid-refractory GvHD, or in the pilot trial in ulcerative colitis. Protein Design Labs, Inc. is a leader in the development of humanized antibodies to prevent or treat various disease conditions. PDL currently has antibodies under development for autoimmune and inflammatory conditions, asthma and cancer. PDL holds fundamental patents for its antibody humanization technology. For further information, visit http://www.pdl.com. NOTE: Protein Design Labs and Nuvion are registered U.S. trademarks and the PDL logo is a trademark of Protein Design Labs, Inc.
136 Ulcerative Colitis
Reuters The Reuters’ Medical News database can be very useful in exploring news archives relating to ulcerative colitis. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to http://www.reutershealth.com/frame2/arch.html and search by “ulcerative colitis” (or synonyms). The following was recently listed in this archive for ulcerative colitis: ·
Hypercoagulation may persist in ulcerative colitis after treatment Source: Reuters Medical News Date: May 21, 2002 http://www.reuters.gov/archive/2002/05/21/professional/links/20020 521clin002.html
·
Shire licenses ulcerative colitis drug Source: Reuters Industry Breifing Date: May 03, 2002 http://www.reuters.gov/archive/2002/05/03/business/links/20020503 inds008.html
·
Unique marker for neutrophil activation in ulcerative colitis identified Source: Reuters Medical News Date: May 02, 2002 http://www.reuters.gov/archive/2002/05/02/professional/links/20020 502clin013.html
·
New compound may ease Crohn's, ulcerative colitis Source: Reuters Health eLine Date: March 28, 2002 http://www.reuters.gov/archive/2002/03/28/eline/links/20020328elin 002.html
·
One-stage procedure favored for ulcerative colitis Source: Reuters Medical News Date: January 08, 2002 http://www.reuters.gov/archive/2002/01/08/professional/links/20020 108clin018.html
·
Ulcerative colitis procedure tied to decreased fertility in women Source: Reuters Industry Breifing Date: December 28, 2001 http://www.reuters.gov/archive/2001/12/28/business/links/20011228 publ002.html
Periodicals and News 137
·
Conductance scanning pinpoints colon "leaks" in ulcerative colitis Source: Reuters Medical News Date: December 26, 2001 http://www.reuters.gov/archive/2001/12/26/professional/links/20011 226clin009.html
·
Patients with ulcerative colitis likely to have history of depression Source: Reuters Medical News Date: September 27, 2001 http://www.reuters.gov/archive/2001/09/27/professional/links/20010 927epid009.html
·
Self-management training reduces office visits by ulcerative colitis patients Source: Reuters Industry Breifing Date: September 21, 2001 http://www.reuters.gov/archive/2001/09/21/business/links/20010921 clin011.html
·
Link documented between history of appendectomy, low risk of ulcerative colitis Source: Reuters Medical News Date: March 14, 2001 http://www.reuters.gov/archive/2001/03/14/professional/links/20010 314epid003.html
·
Incara begins phase II/III trial of ulcerative colitis treatment Source: Reuters Industry Breifing Date: January 30, 2001 http://www.reuters.gov/archive/2001/01/30/business/links/20010130 drgd005.html
·
IV azathioprine appears safe for severe ulcerative colitis treatment Source: Reuters Industry Breifing Date: January 26, 2001 http://www.reuters.gov/archive/2001/01/26/business/links/20010126 clin007.html
·
Ursodiol may lower risk of colon cancer in ulcerative colitis patients at high risk Source: Reuters Industry Breifing Date: January 15, 2001 http://www.reuters.gov/archive/2001/01/15/business/links/20010115 clin016.html
138 Ulcerative Colitis
·
Polymorphism is a marker for severe ulcerative colitis Source: Reuters Medical News Date: December 27, 2000 http://www.reuters.gov/archive/2000/12/27/professional/links/20001 227clin002.html
·
Elan, Incara to partner on ulcerative colitis treatment Source: Reuters Industry Breifing Date: December 22, 2000 http://www.reuters.gov/archive/2000/12/22/business/links/20001222 inds014.html
·
InKine's Colirest shows phase II efficacy in ulcerative colitis Source: Reuters Industry Breifing Date: December 11, 2000 http://www.reuters.gov/archive/2000/12/11/business/links/20001211 drgd008.html
·
Unfractionated heparin alone is not effective for ulcerative colitis Source: Reuters Industry Breifing Date: October 27, 2000 http://www.reuters.gov/archive/2000/10/27/business/links/20001027 clin019.html
·
Hodgkin's disease risk increased in patients with ulcerative colitis Source: Reuters Medical News Date: September 18, 2000 http://www.reuters.gov/archive/2000/09/18/professional/links/20000 918epid006.html
·
FDA grants approval to Salix's ulcerative colitis treatment Colazal Source: Reuters Industry Breifing Date: July 24, 2000 http://www.reuters.gov/archive/2000/07/24/business/links/20000724 rglt001.html
·
Long-term function good after ileal pouch-anal anastomosis for ulcerative colitis Source: Reuters Medical News Date: July 04, 2000 http://www.reuters.gov/archive/2000/07/04/professional/links/20000 704clin009.html
Periodicals and News 139
·
Microsatellite marker may predict dysplasia in patients with ulcerative colitis Source: Reuters Medical News Date: May 15, 2000 http://www.reuters.gov/archive/2000/05/15/professional/links/20000 515clin014.html
·
Addition of sodium butyrate may improve mesalazine therapy for ulcerative colitis Source: Reuters Medical News Date: May 09, 2000 http://www.reuters.gov/archive/2000/05/09/professional/links/20000 509clin013.html
·
End ileostomy preferred in treating ulcerative colitis Source: Reuters Medical News Date: April 27, 2000 http://www.reuters.gov/archive/2000/04/27/professional/links/20000 427clin011.html
·
High intake of mono- and polyunsaturated fat, vitamin B6 may increase ulcerative colitis risk Source: Reuters Medical News Date: April 21, 2000 http://www.reuters.gov/archive/2000/04/21/professional/links/20000 421epid005.html
·
Salix ulcerative colitis drug deemed approvable Source: Reuters Medical News Date: March 28, 2000 http://www.reuters.gov/archive/2000/03/28/professional/links/20000 328rglt003.html
·
Appendectomy may reduce risk of ulcerative colitis Source: Reuters Medical News Date: January 20, 2000 http://www.reuters.gov/archive/2000/01/20/professional/links/20000 120epid003.html
·
Salix reacquires rights to ulcerative colitis drug Source: Reuters Medical News Date: December 23, 1999 http://www.reuters.gov/archive/1999/12/23/professional/links/19991 223inds004.html
140 Ulcerative Colitis
·
Patients with ulcerative colitis, Crohn's disease treated with intestinal parasite Source: Reuters Medical News Date: September 03, 1999 http://www.reuters.gov/archive/1999/09/03/professional/links/19990 903clin008.html
·
Unfractionated heparin effective in patients with highly active ulcerative colitis Source: Reuters Medical News Date: July 06, 1999 http://www.reuters.gov/archive/1999/07/06/professional/links/19990 706clin008.html
·
IV cyclosporin plus 6-mercaptopurine or azathioprine an option for severe, refractory ulcerative colitis Source: Reuters Medical News Date: June 18, 1999 http://www.reuters.gov/archive/1999/06/18/professional/links/19990 618clin006.html
·
Primary sclerosing cholangitis increases cancer risk in ulcerative colitis Source: Reuters Medical News Date: June 17, 1999 http://www.reuters.gov/archive/1999/06/17/professional/links/19990 617clin008.html
·
Anti-clotting drug may help ulcerative colitis Source: Reuters Health eLine Date: May 25, 1999 http://www.reuters.gov/archive/1999/05/25/eline/links/19990525elin 009.html
·
Heparin has modest effect on symptoms of ulcerative colitis Source: Reuters Medical News Date: May 24, 1999 http://www.reuters.gov/archive/1999/05/24/professional/links/19990 524clin015.html
·
Treatment of ulcerative colitis reduces colon cancer risk Source: Reuters Medical News Date: May 18, 1999 http://www.reuters.gov/archive/1999/05/18/professional/links/19990 518epid002.html
Periodicals and News 141
·
Drug cuts cancer risk in ulcerative colitis Source: Reuters Health eLine Date: May 17, 1999 http://www.reuters.gov/archive/1999/05/17/eline/links/19990517elin 013.html
·
Bradykinin B2 receptor antagonist ameliorates ulcerative colitis in mice Source: Reuters Medical News Date: May 05, 1999 http://www.reuters.gov/archive/1999/05/05/professional/links/19990 505scie001.html
·
Ulcerative colitis patients at higher risk of cancer than general population Source: Reuters Medical News Date: April 13, 1999 http://www.reuters.gov/archive/1999/04/13/professional/links/19990 413epid003.html
The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine.
Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name. Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “ulcerative colitis” (or synonyms). As this service is oriented
142 Ulcerative Colitis
to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about.
Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “ulcerative colitis” (or synonyms). If you know the name of a company that is relevant to ulcerative colitis, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks.
BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “ulcerative colitis” (or synonyms).
Newsletters on Ulcerative Colitis Given their focus on current and relevant developments, newsletters are often more useful to patients than academic articles. You can find newsletters using the Combined Health Information Database (CHID). You will need to use the “Detailed Search” option. To access CHID, go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. Your investigation must limit the search to “Newsletter” and “ulcerative colitis.” Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter.” By making these selections and typing in “ulcerative colitis” or synonyms into the “For these words:” box, you will only receive results on newsletters. The following list was generated using the options described above: ·
Determining the Need for Surgery Source: CCFA Newsletter. Crohn's and Colitis Foundation of America Newsletter. p. 2. Winter 1993.
Periodicals and News 143
Contact: Available from Crohn's and Colitis Foundation of America. 386 Park Avenue South, 17th Floor, New York, NY 10016. VOICE (800) 9322423 or (212) 685-3440; FAX (212) 779-4098. Summary: Inflammatory bowel disease (IBD), both ulcerative colitis and Crohn's disease, is a chronic disease affecting a young population, often with significant morbidity and mortality, and often requiring surgery. This brief newsletter article discusses the assessment of complications and the need for surgery. The author reports on the experience of the Cleveland Clinic Foundation, including its extensive long-term follow-up program. The article concludes with a list of indications for surgery in Crohn's disease. ·
IBD Should Not Be Deciding Factor in Pregnancy Source: Crohn's and Colitis Foundation of America, Inc., CCFA News. p. 2. Summer 1992. Contact: Available from CCFA. Greater Washington D.C. Chapter, 901 King Street, Suite 101-A, Alexandria, VA 22314. (703) 739-2548. Summary: A large percentage of patients initially diagnosed with Crohn's disease or ulcerative colitis are in the reproductive years. This brief newsletter article stresses that recent reports are relatively favorable regarding the effects of pregnancy on inflammatory bowel disease (IBD). The author also considers whether IBD adversely affects the outcome of the pregnancy and provides information about drug therapy for IBD during pregnancy.
Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “ulcerative colitis” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as it is
144 Ulcerative Colitis
updated every 3 months. The following is a typical result when searching for newsletter articles on ulcerative colitis: ·
Crohn's Disease and Ulcerative Colitis: Taming Painful Inflammatory Bowel Disease Source: Mayo Clinic Women's Healthsource. 4(6): 4-5. June 2000. Contact: Available from Mayo Foundation for Medical Education and Research. 200 First Street SW, Rochester, MN 55905. Summary: This health newsletter article describes inflammatory bowel disease (IBD), an umbrella term for Crohn's disease and ulcerative colitis (UC). The author notes that the cause of IBD is unclear, but abnormalities of the immune system are associated with these diseases. IBD is an inflammatory disease, and it is this inflammation that results in pain and diarrhea. Symptoms can also include weight loss, fatigue, rectal bleeding, and anemia. The location of the inflammation within the digestive tract is one of the features that differentiates Crohn's disease from ulcerative colitis. Crohn's disease can affect any part of the digestive tract, from the mouth to the anus, although inflammation is usually in the small intestine. With UC, inflammation is usually in the large intestine and rectum, and ulcers often form. These disorders may also cause other health complications, including an increased risk for developing colon cancer. The symptoms of Crohn's disease are similar to irritable bowel syndrome (IBS), so diagnostic tests to differentiate the diseases may include blood tests, flexible sigmoidoscopy, colonoscopy, and barium enema. Treatment of IBD depends on the severity of disease and the associated complications. Treatment strategies can include diet, medications, counseling, and surgery. While there is no cure for IBD, some people have long periods of remission when their symptoms are well controlled. One sidebar describes current research efforts on Crohn's disease and ulcerative colitis. 1 figure.
·
Ulcerative Colitis: Manageable, With a Brighter Outlook Source: Mayo Clinic Health Letter. 13(12): 1-2. December 1995. Contact: Available from Mayo Clinic Health Letter. Subscription Services, P.O. Box 53889, Boulder, CO 80322-3889. (800) 333-9037. Summary: This newsletter article brings readers up-to-date on the management of ulcerative colitis (UC), a form of inflammatory bowel disease (IBD). The article defines the disease and describes diagnostic tests used to confirm UC. It also includes tips on how to manage flareups of the disease, options for drug therapy, and the role of surgery to treat
Periodicals and News 145
UC. The article concludes with a brief look at treatments currently in the research stage. 2 figures.
Academic Periodicals covering Ulcerative Colitis Academic periodicals can be a highly technical yet valuable source of information on ulcerative colitis. We have compiled the following list of periodicals known to publish articles relating to ulcerative colitis and which are currently indexed within the National Library of Medicine’s PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on ulcerative colitis published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical’s name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also visit http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on ulcerative colitis: ·
Archives of Internal Medicine. (Arch Intern Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ar chives+of+Internal+Medicine&dispmax=20&dispstart=0
·
British Medical Journal. (Br Med J) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Bri tish+Medical+Journal&dispmax=20&dispstart=0
·
Critical Care Medicine. (Crit Care Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Cr itical+Care+Medicine&dispmax=20&dispstart=0
146 Ulcerative Colitis
·
Journal of Clinical Immunology. (J Clin Immunol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Clinical+Immunology&dispmax=20&dispstart=0
·
Journal of Surgical Oncology. (J Surg Oncol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Surgical+Oncology&dispmax=20&dispstart=0
·
Psychosomatic Medicine. (Psychosom Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ps ychosomatic+Medicine&dispmax=20&dispstart=0
·
Scandinavian Journal of Clinical and Laboratory Investigation. (Scand J Clin Lab Invest) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Sc andinavian+Journal+of+Clinical+and+Laboratory+Investigation&dispm ax=20&dispstart=0
·
Scandinavian Journal of Gastroenterology. (Scand J Gastroenterol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Sc andinavian+Journal+of+Gastroenterology&dispmax=20&dispstart=0
Vocabulary Builder Indicative: That indicates; that points out more or less exactly; that reveals fairly clearly. [EU] Lipoxygenase: An enzyme of the oxidoreductase class that catalyzes reactions between linoleate and other fatty acids and oxygen to form hydroperoxy-fatty acid derivatives. Related enzymes in this class include the arachidonate lipoxygenases, arachidonate 5-lipoxygenase, arachidonate 12lipoxygenase, and arachidonate 15-lipoxygenase. EC 1.13.11.12. [NIH]
Physician Guidelines and Databases 147
CHAPTER 8. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.
NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); guidelines available at http://www.niddk.nih.gov/health/health.htm
148 Ulcerative Colitis
NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.25 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:26 ·
Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html
·
HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html
·
NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html
·
Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/
·
Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html
·
Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html
Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 26 See http://www.nlm.nih.gov/databases/databases.html. 25
Physician Guidelines and Databases 149
·
Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/
·
Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html
·
Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html
·
Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html
·
MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html
·
Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html
·
Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html
While all of the above references may be of interest to physicians who study and treat ulcerative colitis, the following are particularly noteworthy.
The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and ulcerative colitis using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “ulcerative colitis” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with ulcerative colitis. The following is a sample result:
150 Ulcerative Colitis
·
Partnership: Talking with Your Doctor Source: Cincinnati, OH: Procter and Gamble Pharmaceuticals. 1999. [12 p.]. Contact: Available from Insights and Answers. P.O. Box 3217, Cincinnati, OH 45273-8266. (800) 663-6698. Website: www.living-better.com. Price: Single copy free with enrollment in the Living with Ulcerative Colitis program. Summary: This booklet, written for patients who have ulcerative colitis (UC), guides readers in how to build a partnership with their health care providers. Building a partnership can help patients live better with UC, including achieving remission and staying in remission as long as possible. The booklet encourages readers to educate themselves about their disease, in order to come prepared to appointments with their physicians. The booklet describes several tools that can help patients communicate with their doctors: the glossary of terms contained in this booklet, a worksheet that guides readers in 'Talking With Your Doctor,' and a calendar that can help to track the ups and downs of UC. Patients are also encouraged to bring a family member or friend to appointments, to help remember important information. The booklet outlines strategies for communication. The bulk of the booklet consists of the glossary of terms, in which each term's pronunciation is followed by a simple one or two sentence definition. There is a blank form at the end of the booklet for recording basic medical statistics (blood pressure, temperature, pulse, and weight) from each doctor's visit. The booklet is part of a patient education program sponsored by Procter and Gamble Pharmaceuticals.
·
Q and A. Crohn's Disease and Ulcerative Colitis: A Teacher's Guide Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1999. 8 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 343-3637 or (800) 932-2423 or (212) 685-3440. Fax (212) 779-4098. Website: www.ccfa.org. E-mail:
[email protected] Price: Single copy free. Summary: This brochure is designed to help teachers understand the needs of students and young people who have Crohn's disease or ulcerative colitis. It provides a brief description and explanation of these two kinds of inflammatory bowel diseases (IBD's) and covers the problems of coping with them and their treatment. Potential problems and issues for students include isolation and depression; absence from school; frequent and sudden need to leave the classroom for the bathroom; participation in class trips and sports; and taking medication
Physician Guidelines and Databases 151
during school hours. The brochure emphasizes the often crucial role that teachers play in identifying exacerbations of IBD's, and recommends direct communication with medical personnel and parents ·
Q and A: About Crohn's Disease Source: New York, NY: Crohn's and Colitis Foundation of America. 1999. 11 p. Contact: Available from Crohn's and Colitis Foundation of America (CCFA). 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 932-2423. E-mail:
[email protected]. Website: www.ccfa.org. Price: Single copy free. Summary: This brochure answers commonly asked questions about Crohn's disease, a serious inflammatory disease of the gastrointestinal (GI) tract. Crohn's disease usually causes diarrhea, crampy abdominal pain, often fever, and at times rectal bleeding. In Crohn's disease (compared to the other inflammatory bowel disease, ulcerative colitis), all layers of the intestine are involved, and there can be normal healthy bowel in between patches of diseased bowel. The diagnosis of Crohn's disease is suggested by the patient history (signs and symptoms); additional testing that may be used include barium x-rays of the upper and lower GI tract, flexible sigmoidoscopy, and sometimes colonoscopy. Laboratory tests are also helpful and include evaluation of the blood and stool. The goals of medical treatment are to suppress the inflammatory response to permit healing of tissue, and to relieve the symptoms of fever, diarrhea, and abdominal pain. Several groups of drugs are used: aminosalicylates, corticosteroids, immune modifiers, and antibiotics. Surgery becomes necessary in Crohn's disease when medication can no longer control the symptoms, or when there is an intestinal obstruction or other complication. Good nutrition is essential in this disease, which is characterized by reduced appetite, poor absorption, and diarrhea, all of which rob the body of fluids, nutrients, vitamins, and minerals. Most people with the illness continue to lead useful and productive lives, even though they may be hospitalized from time to time, and may need to take medications. The brochure concludes with a brief description of current research efforts and a detailed glossary of related terms. 1 figure.
·
Now Medicare Covers a Test That Could Save Your Life: What You Should Know About New Medicare Colorectal Cancer Screening Benefit [and] Screening for Your Family Source: Arlington, VA: American College of Gastroenterology. 1998. 6 p.
152 Ulcerative Colitis
Contact: Available from American College of Gastroenterology. 4900 B South 31st Street, Arlington, VA 22206. (800) 478-2876. Price: Single copy free. Summary: This brochure describes colorectal cancer screening and new Medicare reimbursement (payment) for its costs. Screening can prevent cancer by removing pre-cancerous growths (polyps), and early detection allows diagnosis before cancers have a chance to spread. Up to 80 percent of colon cancer deaths can be prevented by timely removal of precancerous polyps. Congress passed a new law which directed Medicare to pay for three tests for colorectal cancer screening. Fecal occult blood tests will be paid for annually; flexible sigmoidoscopy will be paid for once every four years for average risk patients; and screening colonoscopy will be paid for once every two years for high risk patients. The brochure describes each of these tests, as well as barium X-ray, noting the advantages and disadvantages of each. High risk patients are those who have a personal history of adenomatous polyps, colorectal cancer, or inflammatory bowel disease (Crohn's disease or ulcerative colitis; those who have a close relative who has had colorectal cancer or an adenomatous polyp; and those who have a family history of familial adenomatous polyposis or of hereditary non-polyposis colorectal cancer. The brochure concludes with information about choosing a physician to do these screening tests. A physician's insert is provided with the brochure; the insert lists the HCPCS Codes and Guidelines for Reimbursement for colorectal cancer screening tests. (AA-M). ·
Practical Guide to Topical and Oral 5-ASA Products for the Treatment of Inflammatory Bowel Disease Source: New York, NY: Crohn's and Colitis Foundation of America, Inc. 1993. 14 p. Contact: Available from Crohn's and Colitis Foundation of America, Inc. 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 3433637 or (800) 932-2423 or (212) 685-3440. Price: Single copy free. Summary: This publication includes highlights from a conference on the use of topical and oral 5-ASA drug therapy to treat inflammatory bowel disease (IBD). Four articles address mechanisms of action and sites of delivery of these drug products; acute and maintenance treatment of leftsided colitis and proctitis; acute and maintenance treatment of Crohn's disease and ulcerative colitis; and the use of steroids and immunosuppressive drugs in conjunction with 5-ASA products for Crohn's disease and ulcerative colitis. The publication also includes four illustrative case examples. After each article and case example, the faculty and audience members' discussion is reprinted. The publication
Physician Guidelines and Databases 153
concludes with a description of the Crohn's and Colitis Foundation of America (CCFA) and its research and educational activities. 22 references. ·
Food and IBD Source: St. Albans, England: National Association for Colitis and Crohn's Disease (NACC). 2001. 20 p. Contact: Available from National Association for Colitis and Crohn's Disease (NACC). 4 Beaumont House, Sutton Road, St. Albans, Hertfordshire, AL1 5HH. 01727 844296. E-mail:
[email protected]. Website: www.nacc.org.uk. Price: Single copy free to members. Summary: This booklet offers information about the role of food in ulcerative colitis (UC) and Crohn's disease (CD), the two types of inflammatory bowel disease (IBD). Topics include the causes of IBD; how food is digested; the importance of eating a healthy diet; how to handle the diarrhea that can be associated with IBD, including how to avoid dehydration, and the use of milk, dairy products, alcohol, caffeine; specific advice for healthy eating with Crohn's disease, including issues of fibrous food, fat absorption, weight loss, tiredness, and special liquid feeds; the role of food in treating CD, including elimination and exclusion diets and parenteral nutrition; specific advice on healthy eating for people with UC, including issues of weight loss, fiber, iron deficiency and protein loss; the role of probiotics and prebiotics in managing UC; and circumstances that require special consideration, such as osteoporosis (a condition of bone thinning), pregnancy, childhood and adolescence, short bowel syndrome, the ileum and vitamin B12, ileostomy and the internal pouch, excess wind (flatulence), and herbal remedies. The booklet includes practical suggestions for everyday coping with IBD. The booklet concludes with a drawing that illustrates the recommended proportions of food in a healthy diet, and a list of resource addresses in England. 3 figures.
·
Drugs Used in IBD Source: St. Albans, England: National Association for Colitis and Crohn's Disease. 2000. 20 p. Contact: Available from National Association for Colitis and Crohn's Disease (NACC). 4 Beaumont House, Sutton Road, St. Albans, Hertfordshire, AL1 5 HH. 01727-844296. Fax 01727-862550. E-mail:
[email protected]. Website: www.nacc.org.uk. Price: Single copy free to members.
154 Ulcerative Colitis
Summary: This booklet helps people with inflammatory bowel disease (IBD) understand the nature and purpose of different drugs used in treatment. IBD is the general term used for ulcerative colitis (UC) and Crohn's disease (CD). The booklet covers how drugs are taken (topical, oral, and intravenous), antiinflammatory drugs, corticosteroids, aminosalicylates (5 ASAs), immunomodulators and immunosuppressants, antibiotics, symptomatic drugs, the role of nutritional support, and special circumstances, including pregnancy and breastfeeding, osteoporosis, children, and the use of alternative and complementary therapies. Specific drugs covered include azathioprine (Imuran), 6 mercaptopurine (Purinethol), cyclosporin (Sandimmune), methotrexate, infliximab (Remicade), metronidazole (Flagyl), ciprofloxacin, clarithromycin, anti-myobacterium (anti tuberculous) therapy, antidiarreals, antimotility drugs, bile salt drugs, bulking agents, and analgesics (pain killers). Since UC and CD are inflammatory diseases, many antiinflammatory drugs are used to combat or dampen down the inflammation. Antiobiotics that kill or inhibit bacteria can also play a role in treatment, particularly for CD. Other drugs may help to reduce symptoms such as diarrhea or pain, but do not reduce inflammation. Nutritional support can be important in IBD. Supplements such as iron, minerals, and vitamins may be prescribed to replace important body chemicals (nutrients) that are lost or cannot be absorbed by the intestines of people who have Crohn's or UC. Special diets can also play a part in treatment for some patients. The booklet concludes by encouraging patients to work closely with their doctor to learn about and implement the drug therapy options that are available. The booklet lists related information and support organizations in England. 1 figure. 2 tables. ·
Living with Inflammatory Bowel Disease: Your Illness and Its Treatment Source: San Bruno, CA: StayWell Company. 1998. 16 p. Contact: Available from StayWell Company. Order Department, 1100 Grundy Lane, San Bruno, CA 94066-9821. (800) 333-3032. Fax (650) 2444512. Price: $1.60 plus shipping and handling; bulk copies available. Order number 11003. Summary: This brochure describes inflammatory bowel disease (IBD), characterized by inflammation (irritation and swelling) of the digestive tract. IBD has two subtypes: ulcerative colitis (UC) and Crohn's disease (CD). Ulcerative colitis occurs in the rectum and sometimes in the colon; Crohn's disease can occur anywhere from the mouth to the anus, but usually affects the last part of the small intestine. The brochure describes
Physician Guidelines and Databases 155
how the digestive tract works, how IBD affects the digestive tract, diagnosing and monitoring IBD, treating IBD with medication, managing daily life, managing nutrition, and surgery for IBD. The symptoms of Crohn's can include abdominal pain and bloating after meals, sores in the anal area, high fever and chills, loss of appetite (possible weight loss), bloody diarrhea, and nausea or vomiting. Diagnostic tests that may be used to confirm Crohn's disease include barium enema, upper GI series, and small bowel series, endoscopy, blood or stool tests, and CT scan. The symptoms of UC can include frequent, loose bowel movements; blood and pus in stools; rectal bleeding; feeling of incomplete bowel movement; urgency; severe straining with bowel movement; joint pain; and rectal pain that comes and goes. Diagnostic tests that may be used to confirm UC include endoscopy, biopsy, blood or stool tests, and xrays of the colon. Drug therapy for IBD can include antiinflammatory agents, corticosteroids, immunosuppressive agents, and antibiotics. Readers are advised to monitor their dietary habits and take note of which foods seem to be problematic. Surgical options described include limited bowel resection, ileoanal pouch, proctocolectomy with permanent ileostomy, continent ileostomy, strictureplasty, and anal fistula surgery; each technique is illustrated with a simple line drawing. The brochure also explains what patients can expect before and after surgery for IBD. The brochure encourages readers to work closely with their health care providers and to seek out support groups to talk with others who are dealing with IBD. The toll free telephone numbers of the Crohn's and Colitis Foundation (800-932-2423) and the United Ostomy Association (800-826-0826) are provided. The brochure is illustrated with full color drawings. 19 figures. ·
Nutrition, Diet and Inflammatory Bowel Disease Source: Toronto, Canada: Crohn's and Colitis Foundation of Canada. 1997. 8 p. Contact: Available from Crohn's and Colitis Foundation of Canada. 21 St. Clair Avenue East, Suite 30, Toronto, Ontario, Canada M4T 1L9. (800) 387-1479 or (416) 920-5035. Fax (416) 929-0364. E-mail:
[email protected]. Price: Single copy free. Summary: This booklet describes the relationship between nutrition and inflammatory bowel disease (IBD), a term used to describe two similar, yet distinct conditions: Crohn's disease and ulcerative colitis (UC). These diseases affect the digestive system and cause the intestines to become inflamed, form sores (ulcers), bleed easily, scar, and lose the normal smoothness of their inner lining. Symptoms of IBD include abdominal pain, cramping, fatigue, and diarrhea. Malabsorption refers to the
156 Ulcerative Colitis
reduced ability of the digestive tract to absorb nutrients. Malabsorption may happen in IBD when nutrients are lost through bleeding and diarrhea, when medications interact adversely with nutrients, or when part of the intestine is surgically removed, leaving less absorptive tissue to process ingested nutrients. A healthy diet is a key component in the treatment of IBD. The booklet concludes with a nutrition checklist to help readers determine whether they ought to consult a physician or dietitian. 1 figure. 3 tables. ·
Facts About Inflammatory Bowel Disease Source: Toronto, Canada: Crohn's and Colitis Foundation of Canada. 1997. 12 p. Contact: Available from Crohn's and Colitis Foundation of Canada. 21 St. Clair Avenue East, Suite 30, Toronto, Ontario, Canada M4T 1L9. (800) 387-1479 or (416) 920-5035. Fax (416) 929-0364. E-mail:
[email protected]. Price: Single copy free. Summary: This booklet describes inflammatory bowel disease (IBD), a term used to describe two similar, but distinct conditions: Crohn's disease and ulcerative colitis (UC). These diseases affect the digestive system and cause the intestines to become inflamed, form sores (ulcers), bleed easily, and scar. The booklet outlines the symptoms of IBD, the parts of the body involved, complications, and possible treatments (diet, medication, surgery). Potential complications of IBD include malnutrition and malabsorption. Nutritional therapy, which includes a combination of diet, nutritional supplements, and bowel rest is important in the treatment of IBD-related malnutrition and malabsorption. To control IBD, anti-inflammatory drugs, drugs to prevent or reduce symptoms, and drugs that treat complications are prescribed. People with Crohn's disease may need surgery to treat abscesses and fistulas, to remove an obstruction or blockage of the intestine, or to remove a piece of diseased intestine. Surgery is less common in UC than in Crohn's disease. This booklet also explains diagnostic tests, surgical procedures, and the role of the health care team. 1 figure.
·
Medication for Inflammatory Bowel Disease Source: Toronto, Canada: Crohn's and Colitis Foundation of Canada. 1997. 12 p. Contact: Available from Crohn's and Colitis Foundation of Canada. 21 St. Clair Avenue East, Suite 30, Toronto, Ontario, Canada M4T 1L9. (800) 387-1479 or (416) 920-5035. Fax (416) 929-0364. E-mail:
[email protected]. Price: Single copy free.
Physician Guidelines and Databases 157
Summary: This booklet describes the role of medications in the management of inflammatory bowel disease (IBD), a term used to describe two similar, but distinct conditions: Crohn's disease and ulcerative colitis (UC). These diseases affect the digestive system and cause the intestines to become inflamed, form sores (ulcers), bleed easily, and scar. People with Crohn's disease or UC may take prescription or over-the-counter medications to reduce inflammation in the gastrointestinal tract, to control diarrhea and cramps, and to treat complications. This booklet describes the most commonly prescribed medications: how they work, and common (or especially serious) side effects. The brochure also discusses the role of nicotine in UC and briefly mentions medications used to treat other symptoms and problems, including hemorrhoids and anal fissures, anal itching, vitamins and minerals, and pain killers. 1 figure. ·
Sexuality, Fertility, Pregnancy and Inflammatory Bowel Disease Source: Toronto, Canada: Crohn's and Colitis Foundation of Canada. 1997. 8 p. Contact: Available from Crohn's and Colitis Foundation of Canada. 21 St. Clair Avenue East, Suite 30, Toronto, Ontario, Canada M4T 1L9. (800) 387-1479 or (416) 920-5035. Fax (416) 929-0364. E-mail:
[email protected]. Price: Single copy free. Summary: This booklet discusses sexuality, fertility, pregnancy and inflammatory bowel disease (IBD), which is a term used to describe two similar, but distinct conditions: Crohn's disease and ulcerative colitis (UC). These diseases affect the digestive system and cause the intestines to become inflamed, form sores (ulcers), bleed easily, and scar. Abdominal cramps and diarrhea, which are common in IBD, may inhibit sexual activity. Malabsorption (which reduces the ability of the digestive tract to absorb the vitamins and minerals in food) may lead to undernourishment, weakness, or loss of energy, all of which may have an impact on the person's sexuality. Medications used to treat IBD do not particularly affect sexual desire or performance, although surgery, a common form of treatment for IBD, and postoperative recovery times do. IBD itself does not affect fertility, although the lack of proper nutrition can affect both men's and women's reproductive abilities. If IBD was controlled at the time of conception, the disease has little or no effect on the outcome of pregnancy. If the disease was active at conception, or becomes active during the pregnancy, there's a slightly increased risk of miscarriage or premature birth. Pregnancy does not increase the chance of recurrence of IBD. Good nutrition, important for all IBD patients, is especially crucial for a pregnant woman with IBD. Pregnant women
158 Ulcerative Colitis
should discuss with their physician the benefits and risks of taking IBD medications during pregnancy. 1 figure. ·
Physician's Guide to Pediatric Crohn's Disease and Ulcerative Colitis Source: New York, NY: Crohn's and Colitis Foundation of America. Boston, MA: Boston University School of Medicine. 1992. 43. Contact: Available from Crohn's and Colitis Foundation of America, Inc. 386 Park Avenue South, 17th Floor, New York, NY 10016-8804. (800) 3433637 or (800) 932-2423 or (212) 685-3440. Price: Single copy free. Distribution may be limited to physicians only. Summary: The purpose of this guide is to provide basic information to primary clinicians, pediatricians, and internists, who treat patients with Crohn's disease and ulcerative colitis. As with any chronic disease, there is always a balance between the suppression of disease activity and the consequences of medical and/or surgical therapy. Topics include a review of inflammatory bowel disease (IBD) and how it affects children, clinical aspects of IBD in children, differences between Crohn's disease and ulcerative colitis in adults and children, differential diagnosis in children, medical treatment and management, surgical treatment and management, and quality of life issues. A quiz for continuing medical education credit is included. 16 charts summarize the material presented. 19 figures.
The NLM Gateway27 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.28 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.29 To use the NLM Gateway, simply go to the search site at Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 29 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize 27 28
Physician Guidelines and Databases 159
http://gateway.nlm.nih.gov/gw/Cmd. Type “ulcerative colitis” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 343670 Books / Periodicals / Audio Visual 2561 Consumer Health 292 Meeting Abstracts 3093 Other Collections 100 Total 349716
HSTAT30 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.31 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.32 Simply search by “ulcerative colitis” (or synonyms) at the following Web site: http://text.nlm.nih.gov. the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 30 Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. 31 The HSTAT URL is http://hstat.nlm.nih.gov/. 32 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the
160 Ulcerative Colitis
Coffee Break: Tutorials for Biologists33 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.34 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.35 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.
Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·
CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.
·
Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.
·
Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.
independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 33 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 34 The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 35 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.
Physician Guidelines and Databases 161
·
MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.
·
Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see the following Web site: http://www.lexical.com/Metaphrase.html.
The Genome Project and Ulcerative Colitis With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to ulcerative colitis. In the following section, we will discuss databases and references used by physicians and scientists who work in this area. Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).36 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “ulcerative colitis” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.
36
162 Ulcerative Colitis
technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for ulcerative colitis: ·
Ulcerative Colitis, Susceptibility to Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?191390
Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·
Immune System: Fights invaders. Examples: Asthma, autoimmune polyglandular syndrome, Crohn’s disease, DiGeorge syndrome, familial Mediterranean fever, immunodeficiency with Hyper-IgM, severe combined immunodeficiency. Web site: http://www.ncbi.nlm.nih.gov/disease/Immune.html
·
Metabolism: Food and energy. Examples: Adreno-leukodystrophy, Atherosclerosis, Best disease, Gaucher disease, Glucose galactose malabsorption, Gyrate atrophy, Juvenile onset diabetes, Obesity, Paroxysmal nocturnal hemoglobinuria, Phenylketonuria, Refsum disease, Tangier disease, Tay-Sachs disease. Web site: http://www.ncbi.nlm.nih.gov/disease/Metabolism.html
·
Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html
·
Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html
Physician Guidelines and Databases 163
·
Transporters: Pumps and channels. Examples: Cystic Fibrosis, deafness, diastrophic dysplasia, Hemophilia A, long-QT syndrome, Menkes syndrome, Pendred syndrome, polycystic kidney disease, sickle cell anemia, Wilson’s disease, Zellweger syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Transporters.html Entrez
Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·
PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
·
Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide
·
Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein
·
Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure
·
Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome
·
PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset
·
OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
·
Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy
·
Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books
·
ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
164 Ulcerative Colitis
·
NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/
To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez, and then select the database that you would like to search. The databases available are listed in the drop box next to “Search.” In the box next to “for,” enter “ulcerative colitis” (or synonyms) and click “Go.” Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database37 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html you can also search across syndromes using an alphabetical index. You can also search at http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database38 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 38 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 37
Physician Guidelines and Databases 165
focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “ulcerative colitis” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to non-professionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.
Specialized References The following books are specialized references written for professionals interested in ulcerative colitis (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · Blackwell’s Primary Care Essentials: Gastointestinal Disease by David W. Hay; Paperback, 1st edition (December 15, 2001), Blackwell Science Inc; ISBN: 0632045035; http://www.amazon.com/exec/obidos/ASIN/0632045035/icongroupinterna · Gastrointestinal Problems by Martin S. Lipsky, M.D. (Editor), Richard Sadovsky, M.D. (Editor); Paperback - 194 pages, 1st edition (August 15, 2000), Lippincott, Williams & Wilkins Publishers; ISBN: 0781720540; http://www.amazon.com/exec/obidos/ASIN/0781720540/icongroupinterna · Rome II: The Functional Gastrointestinal Disorders by Douglas A. Drossman (Editor); Paperback - 800 pages, 2nd edition (March 1, 2000), Degnon Associates Inc.; ISBN: 0965683729; http://www.amazon.com/exec/obidos/ASIN/0965683729/icongroupinterna
Vocabulary Builder Adjuvant: A substance which aids another, such as an auxiliary remedy; in immunology, nonspecific stimulator (e.g., BCG vaccine) of the immune response. [EU] Ciprofloxacin: A carboxyfluoroquinoline antimicrobial agent that is effective against a wide range of microorganisms. It has been successfully and safely used in the treatment of resistant respiratory, skin, bone, joint, gastrointestinal, urinary, and genital infections. [NIH]
166 Ulcerative Colitis
Clarithromycin: A semisynthetic macrolide antibiotic derived from erythromycin that is active against a variety of microorganisms. It can inhibit protein synthesis in bacteria by reversibly binding to the 50S ribosomal subunits. This inhibits the translocation of aminoacyl transfer-RNA and prevents peptide chain elongation. [NIH] Curative: Tending to overcome disease and promote recovery. [EU] Immunosuppressant: An agent capable of suppressing immune responses. [EU]
Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of the heart as it contracts. [NIH]
Dissertations 167
CHAPTER 9. DISSERTATIONS ON ULCERATIVE COLITIS Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to ulcerative colitis. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.
Dissertations on Ulcerative Colitis ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to ulcerative colitis. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with ulcerative colitis:
168 Ulcerative Colitis
·
Quality of Life of Patients with Mucosal Ulcerative Colitis Following Ileal Pouch Anal Anastomosis Surgery by Quinn Griffin, Mary Therese; Phd from Case Western Reserve University (health Sciences), 2001, 210 pages http://wwwlib.umi.com/dissertations/fullcit/3034623
Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to ulcerative colitis is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.
169
PART III. APPENDICES
ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with ulcerative colitis and related conditions.
Researching Your Medications 171
APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with ulcerative colitis. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for ulcerative colitis. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of ulcerative colitis. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.
172 Ulcerative Colitis
Your Medications: The Basics39 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of ulcerative colitis. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with ulcerative colitis take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·
Ask about all parts of your treatment, including diet changes, exercise, and medicines.
·
Ask about the risks and benefits of each medicine or other treatment you might receive.
·
Ask how often you or your doctor will check for side effects from a given medication.
Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for ulcerative colitis. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·
The name of the medicine and what it is supposed to do.
·
How and when to take the medicine, how much to take, and for how long.
·
What food, drinks, other medicines, or activities you should avoid while taking the medicine.
·
What side effects the medicine may have, and what to do if they occur.
·
If you can get a refill, and how often.
39
This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.
Researching Your Medications 173
·
About any terms or directions you do not understand.
·
What to do if you miss a dose.
·
If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).
Do not forget to tell your doctor about all the medicines you are currently taking (not just those for ulcerative colitis). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·
Name of medicine
·
Reason taken
·
Dosage
·
Time(s) of day
Also include any over-the-counter medicines, such as: ·
Laxatives
·
Diet pills
·
Vitamins
·
Cold medicine
·
Aspirin or other pain, headache, or fever medicine
·
Cough medicine
·
Allergy relief medicine
·
Antacids
·
Sleeping pills
·
Others (include names)
Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the
174 Ulcerative Colitis
medications your doctor has recommended for ulcerative colitis. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.40 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications you are taking. Therefore, we have compiled a list of medications associated with the treatment of ulcerative colitis. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.). The following drugs have been mentioned in the Pharmacopeia and other sources as being potentially applicable to ulcerative colitis: Azathioprine ·
Systemic - U.S. Brands: Imuran http://www.nlm.nih.gov/medlineplus/druginfo/azathioprinesys temic202077.html
Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.
40
Researching Your Medications 175
Balsalazide ·
Systemic - U.S. Brands: Colazal http://www.nlm.nih.gov/medlineplus/druginfo/balsalazidesyste mic500233.html
Corticosteroids ·
Dental - U.S. Brands: Kenalog in Orabase; Orabase-HCA; Oracort; Oralone http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsd ental202010.html
·
Inhalation - U.S. Brands: AeroBid; AeroBid-M; Azmacort; Beclovent; Decadron Respihaler; Pulmicort Respules; Pulmicort Turbuhaler; Vanceril; Vanceril 84 mcg Double Strength http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsi nhalation202011.html
·
Nasal - U.S. Brands: Beconase; Beconase AQ; Dexacort Turbinaire; Flonase; Nasacort; Nasacort AQ; Nasalide; Nasarel; Nasonex; Rhinocort; Vancenase; Vancenase AQ 84 mcg; Vancenase pockethaler http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsn asal202012.html
·
Ophthalmic - U.S. Brands: AK-Dex; AK-Pred; AK-Tate; Baldex; Decadron; Dexair; Dexotic; Econopred; Econopred Plus; Eflone; Flarex; Fluor-Op; FML Forte; FML Liquifilm; FML S.O.P.; HMS Liquifilm; Inflamase Forte; Inflamase Mild; I-Pred; Lite Pred; Maxidex; Ocu-Dex; Ocu-Pred; Ocu-Pr http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidso phthalmic202013.html
·
Otic - U.S. Brands: Decadron http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidso tic202014.html
·
Rectal - U.S. Brands: Anucort-HC; Anu-Med HC; Anuprep HC; Anusol-HC; Anutone-HC; Anuzone-HC; Cort-Dome; Cortenema; Cortifoam; Hemorrhoidal HC; Hemril-HC Uniserts; Proctocort; Proctosol-HC; Rectosol-HC http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsr ectal203366.html
176 Ulcerative Colitis
Cyclosporine ·
Systemic - U.S. Brands: Neoral; Sandimmune; SangCya http://www.nlm.nih.gov/medlineplus/druginfo/cyclosporinesys temic202176.html
Levamisole ·
Systemic - U.S. Brands: http://www.nlm.nih.gov/medlineplus/druginfo/cyclosporinesys temic202176.html
Loperamide ·
Oral - U.S. Brands: Imodium http://www.nlm.nih.gov/medlineplus/druginfo/loperamideoral2 02332.html
Mercaptopurine ·
Systemic - U.S. Brands: Purinethol http://www.nlm.nih.gov/medlineplus/druginfo/mercaptopurine systemic202350.html
Mesalamine ·
Oral - U.S. Brands: Asacol; Pentasa http://www.nlm.nih.gov/medlineplus/druginfo/mesalamineoral 202734.html
·
Rectal - U.S. Brands: Canasa; Rowasa http://www.nlm.nih.gov/medlineplus/druginfo/mesalaminerect al202351.html
Metronidazole ·
Systemic - U.S. Brands: Flagyl; Protostat http://www.nlm.nih.gov/medlineplus/druginfo/metronidazoles ystemic202365.html
·
Vaginal - U.S. Brands: MetroGel-Vaginal http://www.nlm.nih.gov/medlineplus/druginfo/metronidazolev aginal202704.html
Olsalazine ·
Oral - U.S. Brands: Dipentum http://www.nlm.nih.gov/medlineplus/druginfo/olsalazineoral20 2422.html
Researching Your Medications 177
Sucralfate ·
Oral - U.S. Brands: Carafate http://www.nlm.nih.gov/medlineplus/druginfo/sucralfateoral20 2533.html
Sulfasalazine ·
Systemic - U.S. Brands: Azulfidine http://www.nlm.nih.gov/medlineplus/druginfo/sulfasalazinesys temic202537.html
Thiamine (Vitamin B 1 ) ·
Systemic - U.S. Brands: Biamine http://www.nlm.nih.gov/medlineplus/druginfo/thiaminevitami nb1systemic202560.html
Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor’s office.
Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. The following medications are listed in the Reuters’ database as associated with ulcerative colitis (including those with contraindications):41 ·
Atropine Sulfate Scopolamine Hydrobromide Hyoscyamine Sulfate Phenobarbital http://www.reutershealth.com/atoz/html/Atropine_Sulfate_Scopolami ne_Hydrobromide_Hyoscyamine_Sulfate_Phenobarbital.htm
·
Azathioprine http://www.reutershealth.com/atoz/html/Azathioprine.htm
·
Balsalazide Disodium http://www.reutershealth.com/atoz/html/Balsalazide_Disodium.htm
41
Adapted from A to Z Drug Facts by Facts and Comparisons.
178 Ulcerative Colitis
·
Clindamycin http://www.reutershealth.com/atoz/html/Clindamycin.htm
·
Clonidine HCl http://www.reutershealth.com/atoz/html/Clonidine_HCl.htm
·
Codeine http://www.reutershealth.com/atoz/html/Codeine.htm
·
Cyclosporine http://www.reutershealth.com/atoz/html/Cyclosporine.htm
·
Cyclosporine(Cyclosporin A) http://www.reutershealth.com/atoz/html/Cyclosporine(Cyclosporin_ A).htm
·
Dicyclomine HCl http://www.reutershealth.com/atoz/html/Dicyclomine_HCl.htm
·
Fentanyl http://www.reutershealth.com/atoz/html/Fentanyl.htm
·
Fentanyl Transdermal System http://www.reutershealth.com/atoz/html/Fentanyl_Transdermal_Syst em.htm
·
Flucytosine http://www.reutershealth.com/atoz/html/Flucytosine.htm
·
Glycopyrrolate http://www.reutershealth.com/atoz/html/Glycopyrrolate.htm
·
Hydrocortisone (Cortisol) http://www.reutershealth.com/atoz/html/Hydrocortisone_(Cortisol).htm
·
Hydromorphone HCl http://www.reutershealth.com/atoz/html/Hydromorphone_HCl.htm
·
Levomethadyl Acetate HCl http://www.reutershealth.com/atoz/html/Levomethadyl_Acetate_HCl .htm
·
Loperamide HCl http://www.reutershealth.com/atoz/html/Loperamide_HCl.htm
·
Meperidine HCl http://www.reutershealth.com/atoz/html/Meperidine_HCl.htm
·
Mesalamine http://www.reutershealth.com/atoz/html/Mesalamine.htm
Researching Your Medications 179
·
Methadone HCl http://www.reutershealth.com/atoz/html/Methadone_HCl.htm
·
Morphine Sulfate http://www.reutershealth.com/atoz/html/Morphine_Sulfate.htm
·
Olsalazine Sodium http://www.reutershealth.com/atoz/html/Olsalazine_Sodium.htm
·
Oxybutynin Chloride http://www.reutershealth.com/atoz/html/Oxybutynin_Chloride.htm
·
Oxycodone HCl http://www.reutershealth.com/atoz/html/Oxycodone_HCl.htm
·
Polyethylene Glycol-Electrolyte Solution http://www.reutershealth.com/atoz/html/Polyethylene_GlycolElectrolyte_Solution.htm
·
Propantheline Bromide http://www.reutershealth.com/atoz/html/Propantheline_Bromide.htm
·
Propoxyphene http://www.reutershealth.com/atoz/html/Propoxyphene.htm
·
Propoxyphene Acetaminophen http://www.reutershealth.com/atoz/html/Propoxyphene_Acetaminop hen.htm
·
Propoxyphene HCl Acetaminophen http://www.reutershealth.com/atoz/html/Propoxyphene_HCl_Acetam inophen.htm
·
Senna http://www.reutershealth.com/atoz/html/Senna.htm
·
Sulfasalazine http://www.reutershealth.com/atoz/html/Sulfasalazine.htm
·
Thiamine HCl http://www.reutershealth.com/atoz/html/Thiamine_HCl.htm Mosby’s GenRx
Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html.
180 Ulcerative Colitis
Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.
Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.
Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with ulcerative colitis--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat ulcerative colitis or potentially create deleterious side effects in patients with ulcerative colitis. You should ask your physician about any contraindications, especially as these might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense.
Researching Your Medications 181
Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it’s especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.
A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with ulcerative colitis. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with ulcerative colitis. The FDA warns patients to watch out for42: ·
Secret formulas (real scientists share what they know)
·
Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)
·
Quick, painless, or guaranteed cures
·
If it sounds too good to be true, it probably isn’t true.
If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.
42
This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.
182 Ulcerative Colitis
General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Drug Development: Molecular Targets for Gi Diseases by Timothy S. Gaginella (Editor), Antonio Guglietta (Editor); Hardcover - 288 pages (December 1999), Humana Press; ISBN: 0896035891; http://www.amazon.com/exec/obidos/ASIN/0896035891/icongroupinterna · Drug Therapy for Gastrointestinal and Liver Diseases by Michael J.G. Farthing, M.D. (Editor), Anne B. Ballinger (Editor); Hardcover - 346 pages, 1st edition (August 15, 2001), Martin Dunitz Ltd.; ISBN: 1853177334; http://www.amazon.com/exec/obidos/ASIN/1853177334/icongroupinterna · Immunopharmacology of the Gastrointestinal System (Handbook of Immunopharmacology) by John L. Wallace (Editor); Hardcover (October 1997), Academic Press; ISBN: 0127328602; http://www.amazon.com/exec/obidos/ASIN/0127328602/icongroupinterna · A Pharmacologic Approach to Gastrointestinal Disorders by James H. Lewis, M.D. (Editor); Hardcover – (February 1994), Lippincott, Williams & Wilkins; ISBN: 0683049704; http://www.amazon.com/exec/obidos/ASIN/0683049704/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Clindamycin: An antibacterial agent that is a semisynthetic analog of lincomycin. [NIH] Codeine: An opioid analgesic related to morphine but with less potent analgesic properties and mild sedative effects. It also acts centrally to suppress cough. [NIH] Flucytosine: A fluorinated cytosine analog that is used as an antifungal agent. [NIH] Glycopyrrolate: A muscarinic antagonist used as an antispasmodic, in some disorders of the gastrointestinal tract, and to reduce salivation with some anesthetics. [NIH] Inhalation: The drawing of air or other substances into the lungs. [EU]
Researching Your Medications 183
Liquifilm: A thin liquid layer of coating. [EU] Ophthalmic: Pertaining to the eye. [EU] Pharmacist: A person trained to prepare and distribute medicines and to give information about them. [NIH] Propoxyphene: A narcotic analgesic structurally related to methadone. Only the dextro-isomer has an analgesic effect; the levo-isomer appears to exert an antitussive effect. [NIH] Scopolamine: An alkaloid from Solanaceae, especially Datura metel L. and Scopola carniolica. Scopolamine and its quaternary derivatives act as antimuscarinics like atropine, but may have more central nervous system effects. Among the many uses are as an anesthetic premedication, in urinary incontinence, in motion sickness, as an antispasmodic, and as a mydriatic and cycloplegic. [NIH] Senna: Preparations of Cassia senna L. and C. angustifolia of the Leguminosae. They contain sennosides, which are anthraquinone type cathartics and are used in many different preparations as laxatives. [NIH] Sucralfate: A basic aluminum complex of sulfated sucrose. It is advocated in the therapy of peptic, duodenal, and prepyloric ulcers, gastritis, reflux esophagitis, and other gastrointestinal irritations. It acts primarily at the ulcer site, where it has cytoprotective, pepsinostatic, antacid, and bile acidbinding properties. The drug is only slightly absorbed by the digestive mucosa, which explains the absence of systemic effects and toxicity. [NIH] Transdermal: Entering through the dermis, or skin, as in administration of a drug applied to the skin in ointment or patch form. [EU] Vaginal: 1. of the nature of a sheath; ensheathing. 2. pertaining to the vagina. 3. pertaining to the tunica vaginalis testis. [EU]
Researching Alternative Medicine 185
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to ulcerative colitis. Finally, at the conclusion of this chapter, we will provide a list of readings on ulcerative colitis from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.
What Is CAM?43 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 43
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.
186 Ulcerative Colitis
treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.
What Are the Domains of Alternative Medicine?44 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are
44
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.
Researching Alternative Medicine 187
practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.
188 Ulcerative Colitis
Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.
Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.
Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.
Researching Alternative Medicine 189
Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient’s recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.
Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.45
45
Adapted from http://www.4woman.gov/faq/alternative.htm.
190 Ulcerative Colitis
Is It Okay to Want Both Traditional and Alternative Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.
Finding CAM References on Ulcerative Colitis Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for ulcerative colitis. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.
The Combined Health Information Database For a targeted search, The Combined Health Information Database is a bibliographic database produced by health-related agencies of the Federal Government (mostly from the National Institutes of Health). This database is updated four times a year at the end of January, April, July, and October. Check the titles, summaries, and availability of CAM-related information by using the “Simple Search” option at the following Web site: http://chid.nih.gov/simple/simple.html. In the drop box at the top, select “Complementary and Alternative Medicine.” Then type “ulcerative colitis” (or synonyms) in the second search box. We recommend that you select 100 “documents per page” and to check the “whole records” options. The following was extracted using this technique:
Researching Alternative Medicine 191
·
Review of Recent Clinical Trials of the Nutritional Supplement Chlorella pyrenoidosa in the Treatment of Fibromyalgia, Hypertension, and Ulcerative Colitis Source: Alternative Therapies in Health and Medicine. 7(3): 79-91. MayJune 2001. Summary: This journal article reviews recent clinical trials of 'Chlorella pyrenoidosa' dietary supplements for the treatment of fibromyalgia, hypertension, and ulcerative colitis. 'Chlorella pyrenoidosa' is a unicellular fresh water green alga rich in proteins, vitamins, minerals, and other substances. Randomized, double-blind, placebo-controlled trials were carried out at Virginia Commonwealth University's Medical College of Virginia. Fifty-five patients with fibromyalgia, 33 with hypertension, and 9 with ulcerative colitis participated. Patients assigned to the active treatment groups consumed 10 g of pure chlorella in tablet form and 100 ml of a liquid containing a chlorella extract each day for 2 months in the hypertension and ulcerative cholitis trials and for 3 months in the fibromyalgia trial. Fibromyalgia patients taking chlorella had greater improvements in pain and function scores than did those taking placebo. In patients with hypertension, dietary supplementation with chlorella (after a 1-month washout of antihypertensive medications) either improved the hypertension or kept it under control, and significantly lowered serum lipid levels. Patients with ulcerative colitis showed significant improvements in symptoms, emotional aspects, and social functions after treatment with chlorella. In the authors' opinion, these results warrant larger, more comprehensive trials of chlorella. The article has 6 tables and 40 references.
·
Nutritional Therapies for Ulcerative Colitis: Literature Review, Chart Review Study, and Future Research Source: Alternative Therapies in Health and Medicine. 6(1): 55-63. January 2000. Summary: This journal article examines the influence of diet and nutritional supplementation on ulcerative colitis (UC). First, it reviews the relevant literature on UC, including studies of diet and intravenous therapy; nutritional status and nutrition supplementation; and bowel flora composition, immune function, and related influences. Then, it presents a retrospective chart review of 24 consecutive UC patients who presented for treatment at a complementary medicine office. This review found that 18 of the 24 patients (75 percent) improved on a sugar-free hypoallergenic diet with nutritional supplementation. The patients experienced both symptomatic improvement and a reduction in the medication dosage needed to control symptoms. Finally, the article offers
192 Ulcerative Colitis
suggestions for future research based on a proposed nutritional model of UC. The article has 3 figures, 5 tables, and 65 references. ·
Nutraceutical Review: Boswellia serrata Source: Women's Health Alternative Medicine Report. 2(3): 1, 5-6. March 2000. Summary: This journal article reviews the constituents, mechanism of action, clinical evidence, dosage, and toxicity of 'Boswellia serrata' (frankincense), a branching tree found in India, Northern Africa, and the Middle East. The bark yields a gummy oleoresin that contains oils, terpenoids, and gum. Up to 16 percent of the resin is essential oil, primarily beta-thujene and p-cymene. Four pentacyclic triterpene acids also are present, with beta-boswellic acid as the major constituent. Although human clinical studies are sorely lacking, animal and in vitro studies suggest that boswellia may be useful for treating many inflammatory and bronchoconstrictive conditions. In one study, patients with ulcerative colitis who were treated with boswellia showed similar improvements as those treated with sulfasalazine, although more of the patients taking boswellia went into remission. In another study, 70 percent of patients with asthma who took boswellia had significant improvement compared with only 27 percent of those taking placebo. Toxicity studies of boswellia in rats and primates showed no pathologic changes in hematologic, biochemical, or histologic parameters at doses of up to 1,000 mg/kg. The article includes a selected bibliography with 12 items.
·
Multimethod Research Study on the Use of Complementary Therapies Among Patients With Inflammatory Bowel Disease Source: Alternative Therapies in Health and Medicine. 4(4): 68-71. July 1998. Summary: This journal article describes a study of the use of complementary therapies among patients with inflammatory bowel disease (IBD). Researchers conducted qualitative interviews with 14 patients who had participated in an earlier, quantitative study of IBD. Nine of the patients had Crohn's disease and five had ulcerative colitis; the average age was 43 years, and the average duration of disease was 13 years. The most commonly used complementary therapies included special diets, herbal therapies, homeopathy, naturopathy, vitamin therapies, and psychological therapies such as imagery, relaxation, and stress management. The patients reported using complementary therapies because of the serious side effects of medical treatment, because they felt conventional treatments did not help, and because
Researching Alternative Medicine 193
complementary therapies were thought to be safe. The patients cited various reasons for not discussing the use of complementary therapies with their physicians, including a belief that the physician would reject the use of these therapies, and the perception that physicians have little or no knowledge about complementary therapies. The authors conclude that identifying the multiple factors influencing the use of complementary therapies may contribute to improved patient-physician communication. The article has 17 references.
National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine’s databases to allow patients to search for articles that specifically relate to ulcerative colitis and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “ulcerative colitis” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to ulcerative colitis: ·
(51)CrEDTA colonic permeability and therapy response in patients with ulcerative colitis. Author(s): Arslan G, Atasever T, Cindoruk M, Yildirim IS. Source: Nuclear Medicine Communications. 2001 September; 22(9): 9971001. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11505209&dopt=Abstract
·
23 cases of chronic nonspecific ulcerative colitis treated by acupuncture and moxibustion. Author(s): Zhang X. Source: J Tradit Chin Med. 1998 September; 18(3): 188-91. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10453610&dopt=Abstract
·
A 66-year-old woman with ulcerative colitis. Author(s): Peppercorn MA.
194 Ulcerative Colitis
Source: Jama : the Journal of the American Medical Association. 1998 March 25; 279(12): 949-53. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9544770&dopt=Abstract ·
A randomized controlled study of evening primrose oil and fish oil in ulcerative colitis. Author(s): Greenfield SM, Green AT, Teare JP, Jenkins AP, Punchard NA, Ainley CC, Thompson RP. Source: Alimentary Pharmacology & Therapeutics. 1993 April; 7(2): 15966. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8485269&dopt=Abstract
·
A rare isoenzyme of alkaline phosphatase in 4 patients with ulcerative colitis. Author(s): Streifler C, Schnitzer N, Harell A. Source: Clinica Chimica Acta; International Journal of Clinical Chemistry. 1972 April; 38(1): 244-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4624227&dopt=Abstract
·
A review of recent clinical trials of the nutritional supplement Chlorella pyrenoidosa in the treatment of fibromyalgia, hypertension, and ulcerative colitis. Author(s): Merchant RE, Andre CA. Source: Alternative Therapies in Health and Medicine. 2001 May-June; 7(3): 79-91. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11347287&dopt=Abstract
·
Absorption of 51Cr-EDTA in ulcerative colitis following rectal instillation. Author(s): Rask-Madsen J, Schwartz M. Source: Scandinavian Journal of Gastroenterology. 1970; 5(5): 361-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4989516&dopt=Abstract
·
Allergic and psychogenic factors in ulcerative colitis in children. Author(s): Schapiro S.
Researching Alternative Medicine 195
Source: Gp. 1967 January; 35(1): 110-7. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6037479&dopt=Abstract ·
An analysis of 10218 ulcerative colitis cases in China. Author(s): Jiang XL, Cui HF. Source: World Journal of Gastroenterology : Wjg. 2002 February; 8(1): 158-61. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11833094&dopt=Abstract
·
An open trial of Cedemin, a Gingko biloba extract with PAFantagonistic effects for ulcerative colitis. Author(s): Sandberg-Gertzen H. Source: The American Journal of Gastroenterology. 1993 April; 88(4): 6156. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8470656&dopt=Abstract
·
Betel nut and smoking. Are they both protective in ulcerative colitis? A pilot study. Author(s): Lee CN, Jayanthi V, McDonald B, Probert CS, Mayberry JF. Source: Arq Gastroenterol. 1996 January-March; 33(1): 3-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8762679&dopt=Abstract
·
Catgut point-embedding therapy in treatment of 76 cases of ulcerative colitis. Author(s): Xiao G, Zhou G. Source: J Tradit Chin Med. 2001 June; 21(2): 116-7. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11498899&dopt=Abstract
·
Children with ulcerative colitis: their own perception of the disease. Author(s): McDermott JF Jr. Source: Psychosomatics. 1966 May-June; 7(3): 163-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5931739&dopt=Abstract
196 Ulcerative Colitis
·
Clinical study on 118 cases of ulcerative colitis treated by integration of traditional Chinese and Western medicine. Author(s): Chen Q, Zhang H. Source: J Tradit Chin Med. 1999 September; 19(3): 163-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10921142&dopt=Abstract
·
Colonic motility in ulcerative colitis after opiate administration. Author(s): Garrett JM, Sauer WG, Moertel CG. Source: Gastroenterology. 1967 July; 53(1): 93-100. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4381766&dopt=Abstract
·
Dietary monounsaturated n-3 and n-6 long-chain polyunsaturated fatty acids affect cellular antioxidant defense system in rats with experimental ulcerative colitis induced by trinitrobenzene sulfonic acid. Author(s): Nieto N, Fernandez MI, Torres MI, Rios A, Suarez MD, Gil A. Source: Digestive Diseases and Sciences. 1998 December; 43(12): 2676-87. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9881500&dopt=Abstract
·
Dietary supplementation of catechins and alpha-tocopherol accelerates the healing of trinitrobenzene sulfonic acid-induced ulcerative colitis in rats. Author(s): Sato K, Kanazawa A, Ota N, Nakamura T, Fujimoto K. Source: J Nutr Sci Vitaminol (Tokyo). 1998 December; 44(6): 769-78. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10197308&dopt=Abstract
·
Dietary supplementation with fish oil in ulcerative colitis. Author(s): Stenson WF, Cort D, Rodgers J, Burakoff R, DeSchryverKecskemeti K, Gramlich TL, Beeken W. Source: Annals of Internal Medicine. 1992 April 15; 116(8): 609-14. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1312317&dopt=Abstract
·
Effect of folate supplementation on the incidence of dysplasia and cancer in chronic ulcerative colitis. Author(s): Gomez G.
Researching Alternative Medicine 197
Source: Gastroenterology. 1991 June; 100(6): 1789-90. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1859539&dopt=Abstract ·
Effect of folate supplementation on the incidence of dysplasia and cancer in chronic ulcerative colitis. A case-control study. Author(s): Lashner BA, Heidenreich PA, Su GL, Kane SV, Hanauer SB. Source: Gastroenterology. 1989 August; 97(2): 255-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2568304&dopt=Abstract
·
Effects of Boswellia serrata gum resin in patients with ulcerative colitis. Author(s): Gupta I, Parihar A, Malhotra P, Singh GB, Ludtke R, Safayhi H, Ammon HP. Source: European Journal of Medical Research. 1997 January; 2(1): 37-43. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9049593&dopt=Abstract
·
Effects of smoking on the urine excretion of oral 51Cr EDTA in ulcerative colitis. Author(s): Benoni C, Prytz H. Source: Gut. 1998 May; 42(5): 656-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9659159&dopt=Abstract
·
Efficacy of use of colonoscopy in dextran sulfate sodium induced ulcerative colitis in rats: the evaluation of the effects of antioxidant by colonoscopy. Author(s): Ahn BO, Ko KH, Oh TY, Cho H, Kim WB, Lee KJ, Cho SW, Hahm KB. Source: International Journal of Colorectal Disease. 2001 June; 16(3): 17481. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11459291&dopt=Abstract
·
Evaluation of antigenicity of germinated barley foodstuff for the treatment of ulcerative colitis in a chronic murine colitis model. Author(s): Kanauchi O, Serizawa I, Matsumura T, Fukuda Y, Satomi M.
198 Ulcerative Colitis
Source: International Journal of Molecular Medicine. 2001 February; 7(2): 143-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11172616&dopt=Abstract ·
Family research on the problem of ulcerative colitis. Author(s): Jackson DD, Yalom I. Source: Archives of General Psychiatry. 1966 October; 15(4): 410-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5954717&dopt=Abstract
·
Fatal outcome in untreated adolescent ulcerative colitis: an unusual case of child neglect. Author(s): Jackson DL, Korbin J, Youngner S, Carter KJ, Robertson AL Jr. Source: Critical Care Medicine. 1983 October; 11(10): 832-3. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6617225&dopt=Abstract
·
Fish oil fatty acid supplementation in active ulcerative colitis: a doubleblind, placebo-controlled, crossover study. Author(s): Aslan A, Triadafilopoulos G. Source: The American Journal of Gastroenterology. 1992 April; 87(4): 432-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1553930&dopt=Abstract
·
Fish oil supplementation and ulcerative colitis. Author(s): Gorson DM. Source: Annals of Internal Medicine. 1992 September 15; 117(6): 535; Discussion 536. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1503361&dopt=Abstract
·
Folate supplementation in ulcerative colitis. Author(s): Ransohoff DF. Source: Gastroenterology. 1990 February; 98(2): 544. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2295414&dopt=Abstract
Researching Alternative Medicine 199
·
Folic acid supplementation and cell kinetics of rectal mucosa in patients with ulcerative colitis. Author(s): Biasco G, Zannoni U, Paganelli GM, Santucci R, Gionchetti P, Rivolta G, Miniero R, Pironi L, Calabrese C, Di Febo G, Miglioli M. Source: Cancer Epidemiology, Biomarkers & Prevention : a Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology. 1997 June; 6(6): 469-71. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9184782&dopt=Abstract
·
Hyperbaric oxygen therapy for severe ulcerative colitis. Author(s): Buchman AL, Fife C, Torres C, Smith L, Aristizibal J. Source: Journal of Clinical Gastroenterology. 2001 October; 33(4): 337-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11588553&dopt=Abstract
·
Hypnosis and the treatment of ulcerative colitis and Crohn's disease. Author(s): Schafer DW. Source: Am J Clin Hypn. 1997 October; 40(2): 111-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9385722&dopt=Abstract
·
Idiopathic ulcerative colitis in the African: a report of 4 cases. Author(s): Billinghurst JR, Welchman JM. Source: British Medical Journal. 1966 January 22; 5481: 211-3. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5902054&dopt=Abstract
·
In vivo butyrate metabolism and colonic permeability in extensive ulcerative colitis. Author(s): Den Hond E, Hiele M, Evenepoel P, Peeters M, Ghoos Y, Rutgeerts P. Source: Gastroenterology. 1998 September; 115(3): 584-90. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9721155&dopt=Abstract
·
Influence of intravenous n-3 lipid supplementation on fatty acid profiles and lipid mediator generation in a patient with severe ulcerative colitis. Author(s): Grimminger F, Fuhrer D, Papavassilis C, Schlotzer E, Mayer K, Heuer KU, Kiss L, Walmrath D, Piberhofer S, Lubbecke F, et al.
200 Ulcerative Colitis
Source: European Journal of Clinical Investigation. 1993 November; 23(11): 706-15. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8307090&dopt=Abstract ·
Intestinal permeability to 51Cr-ethylenediaminetetraacetate in patients with ulcerative colitis. Author(s): Zuckerman MJ, Watts MT. Source: The American Journal of Gastroenterology. 1993 November; 88(11): 1978-9. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8237961&dopt=Abstract
·
Ispaghula husk may relieve gastrointestinal symptoms in ulcerative colitis in remission. Author(s): Hallert C, Kaldma M, Petersson BG. Source: Scandinavian Journal of Gastroenterology. 1991 July; 26(7): 74750. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1654592&dopt=Abstract
·
Kui jie qing in the treatment of chronic non-specific ulcerative colitis. Author(s): Wang B, Ren S, Feng W, Zhong Z, Qin C. Source: J Tradit Chin Med. 1997 March; 17(1): 10-3. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10437236&dopt=Abstract
·
Long-term double-blind study on the influence of dietary fibres on faecal bile acid excretion in juvenile ulcerative colitis. Author(s): Ejderhamn J, Hedenborg G, Strandvik B. Source: Scandinavian Journal of Clinical and Laboratory Investigation. 1992 November; 52(7): 697-706. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1360699&dopt=Abstract
·
Maintenance of remission in ulcerative colitis with sulphasalazine or a high-fibre diet: a clinical trial. Author(s): Davies PS, Rhodes J.
Researching Alternative Medicine 201
Source: British Medical Journal. 1978 June 10; 1(6126): 1524-5. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=26448&dopt=Abstract ·
Microsatellite instability in non-neoplastic mucosa of patients with ulcerative colitis: effect of folate supplementation. Author(s): Cravo ML, Albuquerque CM, Salazar de Sousa L, Gloria LM, Chaves P, Dias Pereira A, Nobre Leitao C, Quina MG, Costa Mira F. Source: The American Journal of Gastroenterology. 1998 November; 93(11): 2060-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9820373&dopt=Abstract
·
Modulatory effects of plasma and colonic milieu of patients with ulcerative colitis on neutrophil reactive oxygen species production in presence of a novel antioxidant, rebamipide. Author(s): Farhadi A, Keshavarzian A, Fitzpatrick LR, Mutlu E, Zhang Y, Banan A. Source: Digestive Diseases and Sciences. 2002 June; 47(6): 1342-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12064811&dopt=Abstract
·
Mormons, smoking, and ulcerative colitis. Author(s): Penny WJ, Penny E, Mayberry JF, Rhodes J. Source: Lancet. 1983 December 3; 2(8362): 1315. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6139666&dopt=Abstract
·
Morphological study on colonic pathology in ulcerative colitis treated by moxibustion. Author(s): Wu HG, Zhou LB, Shi DR, Liu SM, Liu HR, Zhang BM, Chen HP, Zhang LS. Source: World Journal of Gastroenterology : Wjg. 2000 December; 6(6): 861-865. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11819709&dopt=Abstract
·
Mucosal inflammatory cytokine production by intestinal biopsies in patients with ulcerative colitis and Crohn's disease. Author(s): Reimund JM, Wittersheim C, Dumont S, Muller CD, Baumann R, Poindron P, Duclos B.
202 Ulcerative Colitis
Source: Journal of Clinical Immunology. 1996 May; 16(3): 144-50. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8734357&dopt=Abstract ·
Non-specific ulcerative colitis in Bedouin Arabs. Author(s): Salem SN, Shubair KS. Source: Lancet. 1967 March 4; 1(7488): 473-5. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4164069&dopt=Abstract
·
Notes on a case of ulcerative colitis. Author(s): Klein HS. Source: The International Journal of Psychoanalysis. 1965 July; 46(3): 34251. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5834997&dopt=Abstract
·
Nutritional therapies for ulcerative colitis: literature review, chart review study, and future research. Author(s): Edman JS, Williams WH, Atkins RC. Source: Alternative Therapies in Health and Medicine. 2000 January; 6(1): 55-63. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10631823&dopt=Abstract
·
Obstructed defecation after undiverted ileoanal pouch reconstruction for ulcerative colitis: pharmacologic approach. Report of a case. Author(s): Abbasakoor F, Evans A, Stephenson BM. Source: Diseases of the Colon and Rectum. 2000 November; 43(11): 1599600. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11089600&dopt=Abstract
·
Prognostic implications of psychiatric diagnosis in ulcerative colitis. Author(s): O'Connor JF, Daniels G, Karush A, Flood C, Stern LO. Source: Psychosomatic Medicine. 1966 July-August; 28(4): 375-81. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5966668&dopt=Abstract
Researching Alternative Medicine 203
Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·
Alternative Medicine Foundation, Inc.: http://www.herbmed.org/
·
AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats
·
Chinese Medicine: http://www.newcenturynutrition.com/
·
drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html
·
Family Village: http://www.familyvillage.wisc.edu/med_altn.htm
·
Google: http://directory.google.com/Top/Health/Alternative/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Alternative/
·
TPN.com: http://www.tnp.com/
·
Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/
·
WebMDÒHealth: http://my.webmd.com/drugs_and_herbs
·
WellNet: http://www.wellnet.ca/herbsa-c.htm
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to ulcerative colitis; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·
General Overview Ulcerative Colitis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Ulcerative colitis Source: Integrative Medicine Communications; www.onemedicine.com
204 Ulcerative Colitis
Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsLookups/Uses/ulc erativecolitis.html Ulcerative Colitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html ·
Alternative Therapy Colon therapy Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,682, 00.html Homeopathy Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsModalities/Homeo pathycm.html
·
Herbs and Supplements Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Acidophilus and Other Probiotics Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000089.html Aloe Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m
Researching Alternative Medicine 205
Aloe Alternative names: Aloe vera, Aloe barbadensis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Aloe.htm Aloe vera Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,100 01,00.html Antibiotics Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Anti-Inflammatory Drugs Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Antioxidants Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Azathioprine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Boswellia Alternative names: Frankincense; Boswellia serrata Roxb. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Boswellia Alternative names: Boswellia serrata Source: Healthnotes, Inc.; www.healthnotes.com
206 Ulcerative Colitis
Hyperlink: http://www.thedacare.org/healthnotes/Herb/Boswellia.htm Boswellia Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Boswellia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Boswellia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Boswellia Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,759, 00.html Caffeine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Calendula Alternative names: Calendula officinalis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Calendula.htm Caprylic acid Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com
Researching Alternative Medicine 207
Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,101 11,00.html Caraway Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Cascara sagrada Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,100 13,00.html Chamomile Alternative names: Matricaria recutita Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Chamomile.htm Chamomile Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Chamomile Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Cisapride Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Comfrey Source: The Canadian Internet Directory for Holistic Help, WellNet, Health and Wellness Network; www.wellnet.ca Hyperlink: http://www.wellnet.ca/herbsa-c.htm
208 Ulcerative Colitis
Corticosteroids Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Corticosteroids.htm Corticosteroids Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Corticosteroids Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Dehydroepiandrosterone (DHEA) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Dehy droepiandrosteroneDHEAcs.html DHEA Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Dehy droepiandrosteroneDHEAcs.html Digestive enzymes Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,100 51,00.html Dioscorea villosa Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Wildyamch. html Eicosapentaenoic Acid (EPA) Source: Integrative Medicine Communications; www.onemedicine.com
Researching Alternative Medicine 209
Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Eicos apentaenoicAcidEPAcs.html EPA Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Eicos apentaenoicAcidEPAcs.html Evening Primrose Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Evening Primrose Alternative names: Oenothera biennis, Sun Drop Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/EveningPri mrosech.html Fiber Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Ginger Alternative names: Zingiber officinale Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Gingerch.ht ml Ginseng Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Glucosamine Source: Integrative Medicine Communications; www.onemedicine.com
210 Ulcerative Colitis
Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Glutamine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Glutamine Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000169.html Glutamine Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,100 30,00.html Grapefruit Seed Extract Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Green-Lipped Mussel Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Green_Lipped_Mussel.h tm Herbal digestive formula Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,101 04,00.html Herbal Medicine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Herbal Medicine
Researching Alternative Medicine 211
Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Hydrocortisone Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Hydrocortisone Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Ispaghula Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Ispaghula Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Psyll iumcs.html L. Acidophilus Alternative names: Lactobacillus Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/Inter actions/Lactobacillusacidophiluscs.html L. Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Lacto bacillusacidophiluscs.html Lactase Source: Healthnotes, Inc.; www.healthnotes.com
212 Ulcerative Colitis
Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Lactobacillus Acidophilus Alternative names: L. Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/Inter actions/Lactobacillusacidophiluscs.html Lactobacillus Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Lactobacillus Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Lacto bacillusacidophiluscs.html Licorice Alternative names: Glycyrrhiza glabra, Glycyrrhiza uralensis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Licorice.htm Licorice Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,801, 00.html Loperamide Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Marshmallow Alternative names: Althea officinalis Source: Healthnotes, Inc.; www.healthnotes.com
Researching Alternative Medicine 213
Hyperlink: http://www.thedacare.org/healthnotes/Herb/Marshmallow.htm Mesalamine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Mesalamine.htm Mesalamine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Mesalamine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Myrrh Alternative names: Commiphora molmol Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Myrrh.htm N-Acetyl Glucosamine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Oenothera biennis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/EveningPri mrosech.html Oral Corticosteroids Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Corticosteroids_Oral.ht m
214 Ulcerative Colitis
Peppermint Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Plantago isphagula Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Psyll iumcs.html Plantago psyllium Alternative names: Psyllium, Ispaghula; Plantago psyllium/ovata Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Prickly Ash Alternative names: Zanthoxylum clava-herculis, Zanthoxylum americanum Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Prickly_Ash.htm Probiotics Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Probiotics.htm Probiotics Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Probiotics Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Psyllium Alternative names: Plantago ovata, Plantago ispaghula Source: Healthnotes, Inc.; www.healthnotes.com
Researching Alternative Medicine 215
Hyperlink: http://www.thedacare.org/healthnotes/Herb/Psyllium.htm Psyllium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Psyllium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Psyllium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Psyllium Alternative names: Ispaghula,Plantago isphagula Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Psyll iumcs.html Senna Alternative names: Cassia senna, Cassia angustifolia Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Senna.htm Senna Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Slippery Elm Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000236.html Slippery elm Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com
216 Ulcerative Colitis
Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,100 56,00.html St. John's wort Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Sulfasalazine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Sulfasalazine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Sulfasalazine.htm Sulfasalazine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Sun Drop Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/EveningPri mrosech.html Wild yam Alternative names: Dioscorea villosa Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Wildyamch. html Wormwood Source: Healthnotes, Inc.; www.healthnotes.com
Researching Alternative Medicine 217
Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Yarrow Alternative names: Achillea millefolium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Yarrow.htm Zingiber officinale Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Gingerch.ht ml ·
Related Conditions Abdominal Wall Inflammation Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Periton itiscc.html Blood Pressure, High Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hypert ensioncc.html Cancer, Colorectal Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Cancer Colorectalcc.html Colon Cancer Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Cancer_Colon.htm Colorectal Cancer Source: Integrative Medicine Communications; www.onemedicine.com
218 Ulcerative Colitis
Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Cancer Colorectalcc.html Erythema Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/SkinDi sordersErythemacc.html High Blood Pressure Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hypert ensioncc.html High Homocysteine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/High_Homocysteine. htm Hypertension Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hypert ensioncc.html Inflammatory Bowel Disease Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Inflammatory_Bowel. htm Inflammatory Bowel Disease Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Irritable Bowel Syndrome Source: Healthnotes, Inc.; www.healthnotes.com
Researching Alternative Medicine 219
Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Malabsorption Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Malabsorption.htm Peritonitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Periton itiscc.html Proctitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Rectal Inflammation Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Skin Disorders, Erythema Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/SkinDi sordersErythemacc.html
General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by
220 Ulcerative Colitis
title; hyperlinks Amazon.com):
provide
rankings,
information,
and
reviews
at
· Gastrointestinal Disorders and Nutrition by Tonia Reinhard; Paperback 192 pages (January 24, 2002), McGraw-Hill Professional Publishing; ISBN: 0737303611; http://www.amazon.com/exec/obidos/ASIN/0737303611/icongroupinterna · Healthy Digestion the Natural Way: Preventing and Healing Heartburn, Constipation, Gas, Diarrhea, Inflammatory Bowel and Gallbladder Diseases, Ulcers, Irritable Bowel Syndrome, and More by D. Lindsey Berkson, et al; Paperback - 256 pages, 1st edition (February 2000), John Wiley & Sons; ISBN: 0471349623; http://www.amazon.com/exec/obidos/ASIN/0471349623/icongroupinterna · No More Heartburn: Stop the Pain in 30 Days--Naturally!: The Safe, Effective Way to Prevent and Heal Chronic Gastrointestinal Disorders by Sherry A. Rogers, M.D.; Paperback - 320 pages (February 2000), Kensington Publishing Corp.; ISBN: 1575665107; http://www.amazon.com/exec/obidos/ASIN/1575665107/icongroupinterna For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU]
Researching Nutrition 221
APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with ulcerative colitis. Any dietary recommendation is based on a patient’s age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with ulcerative colitis may be given different recommendations. Some recommendations may be directly related to ulcerative colitis, while others may be more related to the patient’s general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of ulcerative colitis. We will then show you how to find studies dedicated specifically to nutrition and ulcerative colitis.
222 Ulcerative Colitis
Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·
Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.
·
Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.
·
Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.
·
Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.
Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·
Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.
·
Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.
·
Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from
Researching Nutrition 223
nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·
Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains
·
Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.
·
Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.
·
Vitamin C allows the body’s immune system to fight various diseases, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.
·
Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.
·
Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.
·
Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.
·
Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.
It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·
Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.
·
Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.
224 Ulcerative Colitis
·
Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.
·
Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.
·
Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.
·
Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.
·
Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.
·
Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.
·
Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.
The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:46 ·
DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.
·
DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.
46
Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.
Researching Nutrition 225
·
RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”
·
RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?47
Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”48 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.49 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 48 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail:
[email protected]. 49 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 47
226 Ulcerative Colitis
the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail:
[email protected]
Finding Studies on Ulcerative Colitis The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.50 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.
50
Researching Nutrition 227
periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “ulcerative colitis” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following is a typical result when searching for recently indexed consumer information on ulcerative colitis: ·
Calming ulcerative colitis. Source: Anonymous Health-News. 1998 June 25; 4(8): 6 1081-5880
·
Short-chain fatty acids in ulcerative colitis. Author(s): Department of Medicine, University of Toronto, Canada. Source: Kim, Y I Nutr-Revolume 1998 January; 56(1 Pt 1): 17-24 0029-6643
The following information is typical of that found when using the “Full IBIDS Database” when searching using “ulcerative colitis” (or a synonym): ·
Autoimmune haemolytic anaemia complicating ulcerative colitis. Author(s): General Hospital, Birmingham. Source: Clements, D Carter, C Allan, R N Br-J-Hosp-Med. 1988 July; 40(1): 72 0007-1064
·
Surgery of aggressive idiopathic proctocolitis and principles of rectal preservation. Author(s): Department of Surgery, University of Milan, Italy. Source: Gallone, L Olmi, L Int-Surg. 1988 Jul-September; 73(3): 163-6 0020-8868
Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·
healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0
·
The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov
228 Ulcerative Colitis
·
The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov
·
The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/
·
The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/
·
Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/
·
Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/
·
Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/
Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats
·
Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html
·
Google: http://directory.google.com/Top/Health/Nutrition/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Nutrition/
·
Yahoo.com: http://dir.yahoo.com/Health/Nutrition/
·
WebMDÒHealth: http://my.webmd.com/nutrition
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to ulcerative colitis; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation:
Researching Nutrition 229
·
Vitamins Folic Acid Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Folic_Acid.htm Folic Acid Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vita minB9FolicAcidcs.html Folic Acid Alternative names: Vitamin B9 (Folic Acid) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/Inter actions/VitaminB9FolicAcidcs.html Vitamin A Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000230.html Vitamin B9 (Folic Acid) Alternative names: Folate, Folic Acid Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vita minB9FolicAcidcs.html Vitamin B9 (Folic Acid) Alternative names: Folate Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/Inter actions/VitaminB9FolicAcidcs.html Vitamin K Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000246.html
230 Ulcerative Colitis
·
Minerals Folate Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Folate Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vita minB9FolicAcidcs.html Folate Alternative names: Vitamin B9 (Folic Acid) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/Inter actions/VitaminB9FolicAcidcs.html Folate Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Iron Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Iron.htm Magnesium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Magnesium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html
Researching Nutrition 231
Sulfur Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Sulfu rcs.html Zinc Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Zincc s.html Zinc Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000128.html ·
Food and Diet Artificial Sweeteners Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Beets Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Brown rice Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Candy Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Chocolate Source: Integrative Medicine Communications; www.onemedicine.com
232 Ulcerative Colitis
Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Coffee Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Cream Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Dairy Foods Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Fats Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Fats Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Fish Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Fish Source: Integrative Medicine Communications; www.onemedicine.com
Researching Nutrition 233
Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Fish Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Fruit Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Grapefruit Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Low-Fat Diet Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Magnesium Sulfate Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Margarine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Meat Source: Integrative Medicine Communications; www.onemedicine.com
234 Ulcerative Colitis
Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Milk Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Milk Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Milk Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Omega-3 Fatty Acids Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.ht m Omega-3 Fatty Acids Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Ome ga3FattyAcidscs.html Omega-3 Fatty Acids Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Rhubarb Source: Integrative Medicine Communications; www.onemedicine.com
Researching Nutrition 235
Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Rice Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Saturated Fats Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Food_Guide/Saturated_Fats.htm Seeds Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Seeds Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.htm Seeds Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Spinach Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Sucralfate Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html
236 Ulcerative Colitis
Sugar Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Sugar Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.htm Sugar Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Sweeteners Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Proctiti scc.html Tea Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Tea Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.htm Tea Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Trans-Fats Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Food_Guide/Trans_Fats.htm
Researching Nutrition 237
Vegetables Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Water Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.htm Water Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm Water Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Weight Loss Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Ulcerative_Colitis.htm Weight Loss Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ulcerat iveColitiscc.html Wheat Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Irritable_Bowel.htm
238 Ulcerative Colitis
Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Anaemia: A reduction below normal in the number of erythrocytes per cu. mm., in the quantity of haemoglobin, or in the volume of packed red cells per 100 ml. of blood which occurs when the equilibrium between blood loss (through bleeding or destruction) and blood production is disturbed. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Fats: One of the three main classes of foods and a source of energy in the body. Fats help the body use some vitamins and keep the skin healthy. They also serve as energy stores for the body. In food, there are two types of fats: saturated and unsaturated. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its
Researching Nutrition 239
principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]
Finding Medical Libraries 241
APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.
Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.51
51
Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.
242 Ulcerative Colitis
Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.
Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):52 ·
Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/
·
Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM
·
Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm
·
California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html
·
California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html
·
California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html
·
California: Gateway Health Library (Sutter Gould Medical Foundation)
·
California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/
52
Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.
Finding Medical Libraries 243
·
California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp
·
California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html
·
California: San José PlaneTree Health Library, http://planetreesanjose.org/
·
California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html
·
California: University of California, Davis. Health Sciences Libraries
·
California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html
·
California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/
·
Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm
·
Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/
·
Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/
·
Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml
·
Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm
·
Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html
·
Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm
·
Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp
·
Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/
244 Ulcerative Colitis
·
Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm
·
Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html
·
Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/
·
Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm
·
Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/
·
Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/
·
Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/
·
Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm
·
Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html
·
Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm
·
Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/
·
Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library
·
Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10
·
Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html
·
Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html
·
Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml
Finding Medical Libraries 245
·
Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp
·
Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/
·
Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html
·
Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm
·
Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp
·
Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/
·
Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html
·
Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/
·
Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm
·
Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/
·
Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html
·
Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm
·
Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html
·
Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41
246 Ulcerative Colitis
·
National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html
·
National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/
·
National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/
·
Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm
·
New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/
·
New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm
·
New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm
·
New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/
·
New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html
·
New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/
·
New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html
·
New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/
·
Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm
·
Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp
Finding Medical Libraries 247
·
Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/
·
Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/
·
Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml
·
Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html
·
Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html
·
Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml
·
Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp
·
Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm
·
Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/
·
South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm
·
Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/
·
Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html
·
Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/
·
Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/
Your Rights and Insurance 249
APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with ulcerative colitis faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.
Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.53 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·
Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.
53Adapted
from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.
250 Ulcerative Colitis
·
Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.
·
Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.
·
Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.
Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·
Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.
·
Women’s health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women’s healthcare services.
·
Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.
·
Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health
Your Rights and Insurance 251
plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care. ·
Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.
Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.
Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·
Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.
·
Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.
·
Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
·
Discuss all current treatments a consumer may be undergoing.
·
Discuss all risks, nontreatment.
·
Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.
benefits,
and
consequences
to
treatment
or
252 Ulcerative Colitis
·
Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.
·
Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.
Health plans, health providers, and healthcare facilities should: ·
Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.
·
Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise patients about medically necessary treatment options.
·
Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.
Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·
Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
·
Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. Confidentiality of Health Information
Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable
Your Rights and Insurance 253
healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records. Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.54
Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”55 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·
Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.
·
Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.
·
Disclose relevant information and clearly communicate wants and needs.
·
Use your health insurance plan’s internal complaint and appeal processes to address your concerns.
·
Avoid knowingly spreading disease.
To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 55 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 54
254 Ulcerative Colitis
·
Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.
·
Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to other patients and the community.
·
Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.
·
Show respect for other patients and health workers.
·
Make a good-faith effort to meet financial obligations.
·
Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.
Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.56 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.57 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits.
More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 57 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 56
Your Rights and Insurance 255
3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time.
256 Ulcerative Colitis
7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.
Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation’s largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful
Your Rights and Insurance 257
contact information on how to find more in-depth information about Medicaid.58
Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·
You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.
·
You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.
·
You or your spouse had Medicare-covered government employment.
If you are under 65, you can get Part A without having to pay premiums if: ·
You have received Social Security or Railroad Retirement Board disability benefit for 24 months.
·
You are a kidney dialysis or kidney transplant patient.
Medicare has two parts: ·
Part A (Hospital Insurance). Most people do not have to pay for Part A.
·
Part B (Medical Insurance). Most people pay monthly for Part B. Part A (Hospital Insurance)
Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare.
This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.
58
258 Ulcerative Colitis
Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The
Your Rights and Insurance 259
phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans.
Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare’s premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·
Part A (Hospital Insurance),
·
Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and
·
A monthly income that is below certain limits.
For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.
NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.59 NORD Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30.
59
260 Ulcerative Colitis
programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.
Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:60 ·
Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html
·
Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html
·
HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html
·
Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html
·
Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html
·
Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html
·
Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html
·
Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html
·
Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
60
Your Rights and Insurance 261
Vocabulary Builder Chlamydia: A genus of the family chlamydiaceae whose species cause a variety of diseases in vertebrates including humans, mice, and swine. Chlamydia species are gram-negative and produce glycogen. The type species is chlamydia trachomatis. [NIH] Hepatomegaly: Enlargement of the liver. [EU]
Online Glossaries 263
ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·
ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html
·
MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp
·
Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/
·
Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
·
On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/
·
Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm
·
Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html
Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a) and drkoop.com (http://www.drkoop.com/). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to ulcerative colitis and keep them on file. The NIH, in particular, suggests that patients with ulcerative colitis visit the following Web sites in the ADAM Medical Encyclopedia:
264 Ulcerative Colitis
·
Basic Guidelines for Ulcerative Colitis Chlamydia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001345.htm Neoplasm Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001310.htm TB Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000077.htm Ulcerative colitis Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000250.htm
·
Signs & Symptoms for Ulcerative Colitis Abdominal distention Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003122.htm Abdominal pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003120.htm Abdominal sounds Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003137.htm Diarrhea Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003126.htm Erythema Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm
Online Glossaries 265
Fever Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003090.htm Gastrointestinal bleeding Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003133.htm Hepatomegaly Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003275.htm Joint pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm Nausea and vomiting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003117.htm Nausea and vomiting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003117.htm Stools - foul smelling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003132.htm Stress Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003211.htm Tenesmus Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003131.htm Ulcers Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003228.htm
266 Ulcerative Colitis
Vomiting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003117.htm Weight loss Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003107.htm ·
Diagnostics and Tests for Ulcerative Colitis Albumin Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003480.htm Barium enema Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003817.htm Biopsy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003416.htm Colonoscopy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003886.htm Liver function tests Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003436.htm Radiography Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003337.htm Sedimentation rate Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003638.htm Sigmoidoscopy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003885.htm
Online Glossaries 267
·
Surgery and Procedures for Ulcerative Colitis Colectomy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002941.htm
·
Background Topics for Ulcerative Colitis Acute Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002215.htm Chronic Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002312.htm Incidence Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002387.htm Respiratory Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002290.htm
Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·
Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical
·
MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html
·
Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/
·
Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine
Glossary 269
ULCERATIVE COLITIS GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Aberrant: Wandering or deviating from the usual or normal course. [EU] Achlorhydria: A lack of hydrochloric acid in gastric juice despite stimulation of gastric secretion. [NIH] Acne: An inflammatory disease of the pilosebaceous unit, the specific type usually being indicated by a modifying term; frequently used alone to designate common acne, or acne vulgaris. [EU] Adjuvant: A substance which aids another, such as an auxiliary remedy; in immunology, nonspecific stimulator (e.g., BCG vaccine) of the immune response. [EU] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Algorithms: A procedure consisting of a sequence of algebraic formulas and/or logical steps to calculate or determine a given task. [NIH] Alimentary: Pertaining to food or nutritive material, or to the organs of digestion. [EU] Alkaline: Having the reactions of an alkali. [EU] Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Alopecia: Baldness; absence of the hair from skin areas where it normally is present. [EU] Anaemia: A reduction below normal in the number of erythrocytes per cu. mm., in the quantity of haemoglobin, or in the volume of packed red cells per 100 ml. of blood which occurs when the equilibrium between blood loss (through bleeding or destruction) and blood production is disturbed. [EU] Analgesic:
An agent that alleviates pain without causing loss of
270 Ulcerative Colitis
consciousness. [EU] Anastomosis: An opening created by surgical, traumatic or pathological means between two normally separate spaces or organs. [EU] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Angiography: Radiography of blood vessels after injection of a contrast medium. [NIH] Anomalies: Birth defects; abnormalities. [NIH] Anorectal: Pertaining to the anus and rectum or to the junction region between the two. [EU] Anorexia: Lack or loss of the appetite for food. [EU] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Antibodies: Proteins that the body makes to protect itself from foreign substances. In diabetes, the body sometimes makes antibodies to work against pork or beef insulins because they are not exactly the same as human insulin or because they have impurities. The antibodies can keep the insulin from working well and may even cause the person with diabetes to have an allergic or bad reaction to the beef or pork insulins. [NIH] Anticholinergic: An agent that blocks the parasympathetic nerves. Called also parasympatholytic. [EU] Antigens: Substances that cause an immune response in the body. The body "sees" the antigens as harmful or foreign. To fight them, the body produces antibodies, which attack and try to eliminate the antigens. [NIH] Antihistamine: A drug that counteracts the action of histamine. The antihistamines are of two types. The conventional ones, as those used in allergies, block the H1 histamine receptors, whereas the others block the H2 receptors. Called also antihistaminic. [EU] Antihypertensive: An agent that reduces high blood pressure. [EU] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Anus: The distal or terminal orifice of the alimentary canal. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting
Glossary 271
from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Ascites: Effusion and accumulation of serous fluid in the abdominal cavity; called also abdominal or peritoneal dropsy, hydroperitonia, and hydrops abdominis. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Asymptomatic: No symptoms; no clear sign of disease present. [NIH] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Barium: An element of the alkaline earth group of metals. It has an atomic symbol Ba, atomic number 56, and atomic weight 138. All of its acid-soluble salts are poisonous. [NIH] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Bereavement: Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. [NIH] Bezoars: Concretions of swallowed hair, fruit or vegetable fibers, or similar substances found in the alimentary canal. [NIH] Bifidobacterium: A rod-shaped, gram-positive, non-acid-fast, non-sporeforming, non-motile bacterium that is a genus of the family actinomycetaceae. It inhabits the intestines and feces of humans as well as the human vagina. [NIH] Bile: An emulsifying agent produced in the liver and secreted into the duodenum. Its composition includes bile acids and salts, cholesterol, and electrolytes. It aids digestion of fats in the duodenum. [NIH] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Buccal: Pertaining to or directed toward the cheek. In dental anatomy, used to refer to the buccal surface of a tooth. [EU] Budesonide:
A glucocorticoid used in the management of asthma, the
272 Ulcerative Colitis
treatment of various skin disorders, and allergic rhinitis. [NIH] Cadaver: A dead body, usually a human body. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Carcinoma: A malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and give rise to metastases. [EU] Catechin: Extracted from Uncaria gambier, Acacia catechu and other plants; it stabilizes collagen and is therefore used in tanning and dyeing; it prevents capillary fragility and abnormal permeability, but was formerly used as an antidiarrheal. [NIH] Causal: Pertaining to a cause; directed against a cause. [EU] Caustic: An escharotic or corrosive agent. Called also cauterant. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Chlamydia: A genus of the family chlamydiaceae whose species cause a variety of diseases in vertebrates including humans, mice, and swine. Chlamydia species are gram-negative and produce glycogen. The type species is chlamydia trachomatis. [NIH] Chlorella: Nonmotile unicellular green algae potentially valuable as a source of high-grade protein and B-complex vitamins. [NIH] Cholangitis: Inflammation of a bile duct. [EU] Cholecystectomy: Surgical removal of the gallbladder. [NIH] Cholelithiasis: The presence or formation of gallstones. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Chronic: Persisting over a long period of time. [EU] Ciprofloxacin: A carboxyfluoroquinoline antimicrobial agent that is effective against a wide range of microorganisms. It has been successfully and safely used in the treatment of resistant respiratory, skin, bone, joint, gastrointestinal, urinary, and genital infections. [NIH] Cirrhosis: Liver disease characterized pathologically by loss of the normal
Glossary 273
microscopic lobular architecture, with fibrosis and nodular regeneration. The term is sometimes used to refer to chronic interstitial inflammation of any organ. [EU] Clarithromycin: A semisynthetic macrolide antibiotic derived from erythromycin that is active against a variety of microorganisms. It can inhibit protein synthesis in bacteria by reversibly binding to the 50S ribosomal subunits. This inhibits the translocation of aminoacyl transfer-RNA and prevents peptide chain elongation. [NIH] Clindamycin: An antibacterial agent that is a semisynthetic analog of lincomycin. [NIH] Clostridium: A genus of motile or nonmotile gram-positive bacteria of the family bacillaceae. Many species have been identified with some being pathogenic. They occur in water, soil, and in the intestinal tract of humans and lower animals. [NIH] Codeine: An opioid analgesic related to morphine but with less potent analgesic properties and mild sedative effects. It also acts centrally to suppress cough. [NIH] Colitis: Inflammation of the colon. [EU] Collagen: The protein substance of the white fibres (collagenous fibres) of skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Colonoscopy: Endoscopic examination, therapy or surgery of the luminal surface of the colon. [NIH] Colorectal: Pertaining to or affecting the colon and rectum. [EU] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Concomitant: Accompanying; accessory; joined with another. [EU] Contracture: A condition of fixed high resistance to passive stretch of a muscle, resulting from fibrosis of the tissues supporting the muscles or the joints, or from disorders of the muscle fibres. [EU] Curative: Tending to overcome disease and promote recovery. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Cytomegalovirus:
A genus of the family herpesviridae, subfamily
274 Ulcerative Colitis
betaherpesvirinae, infecting the salivary glands, liver, spleen, lungs, eyes, and other organs, in which they produce characteristically enlarged cells with intranuclear inclusions. Infection with Cytomegalovirus is also seen as an opportunistic infection in AIDS. [NIH] Defecation: The normal process of elimination of fecal material from the rectum. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Digestion: The process of breakdown of food for metabolism and use by the body. [NIH] Dilatation: The condition, as of an orifice or tubular structure, of being dilated or stretched beyond the normal dimensions. [EU] Disposition: A tendency either physical or mental toward certain diseases. [EU]
Distal: Remote; farther from any point of reference; opposed to proximal. In dentistry, used to designate a position on the dental arch farther from the median line of the jaw. [EU] Diverticulitis: Inflammation of a diverticulum, especially inflammation related to colonic diverticula, which may undergo perforation with abscess formation. Sometimes called left-sided or L-sides appendicitis. [EU] Diverticulum: A pathological condition manifested as a pouch or sac opening from a tubular or sacular organ. [NIH] Doxorubicin: Antineoplastic antibiotic obtained from Streptomyces peucetics. It is a hydroxy derivative of daunorubicin and is used in treatment of both leukemia and solid tumors. [NIH] Duodenum: The first or proximal portion of the small intestine, extending from the pylorus to the jejunum; so called because it is about 12 fingerbreadths in length. [EU] Dyspepsia: Impairment of the power of function of digestion; usually applied to epigastric discomfort following meals. [EU] Dysplasia: Abnormality of development; in pathology, alteration in size, shape, and organization of adult cells. [EU] Elective: Subject to the choice or decision of the patient or physician; applied to procedures that are advantageous to the patient but not urgent. [EU]
Glossary 275
Electrolyte: A substance that dissociates into ions when fused or in solution, and thus becomes capable of conducting electricity; an ionic solute. [EU] Encephalopathy: Any degenerative disease of the brain. [EU] Encopresis: Incontinence of feces not due to organic defect or illness. [NIH] Endocrinology: A subspecialty of internal medicine concerned with the metabolism, physiology, and disorders of the endocrine system. [NIH] Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU] Endothelium: The layer of epithelial cells that lines the cavities of the heart and of the blood and lymph vessels, and the serous cavities of the body, originating from the mesoderm. [EU] Enema: A clyster or injection; a liquid injected or to be injected into the rectum. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Epithelium: The covering of internal and external surfaces of the body, including the lining of vessels and other small cavities. It consists of cells joined by small amounts of cementing substances. Epithelium is classified into types on the basis of the number of layers deep and the shape of the superficial cells. [EU] Erythema: A name applied to redness of the skin produced by congestion of the capillaries, which may result from a variety of causes, the etiology or a specific type of lesion often being indicated by a modifying term. [EU] Escherichia: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria whose organisms occur in the lower part of the intestine of warmblooded animals. The species are either nonpathogenic or opportunistic pathogens. [NIH] Esophagitis: Inflammation, acute or chronic, of the esophagus caused by bacteria, chemicals, or trauma. [NIH] Exogenous: Developed or originating outside the organism, as exogenous disease. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH]
276 Ulcerative Colitis
Fats: One of the three main classes of foods and a source of energy in the body. Fats help the body use some vitamins and keep the skin healthy. They also serve as energy stores for the body. In food, there are two types of fats: saturated and unsaturated. [NIH] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Fissure: Any cleft or groove, normal or otherwise; especially a deep fold in the cerebral cortex which involves the entire thickness of the brain wall. [EU] Fistula: An abnormal passage or communication, usually between two internal organs, or leading from an internal organ to the surface of the body; frequently designated according to the organs or parts with which it communicates, as anovaginal, brochocutaneous, hepatopleural, pulmonoperitoneal, rectovaginal, urethrovaginal, and the like. Such passages are frequently created experimentally for the purpose of obtaining body secretions for physiologic study. [EU] Flatulence: The presence of excessive amounts of air or gases in the stomach or intestine, leading to distention of the organs. [EU] Flucytosine: A fluorinated cytosine analog that is used as an antifungal agent. [NIH] Fluorescence: The property of emitting radiation while being irradiated. The radiation emitted is usually of longer wavelength than that incident or absorbed, e.g., a substance can be irradiated with invisible radiation and emit visible light. X-ray fluorescence is used in diagnosis. [NIH] Fluorouracil: A pyrimidine analog that acts as an antineoplastic antimetabolite and also has immunosuppressant. It interferes with DNA synthesis by blocking the thymidylate synthetase conversion of deoxyuridylic acid to thymidylic acid. [NIH] Gastritis: Inflammation of the stomach. [EU] Gastroduodenal: Pertaining to or communicating with the stomach and duodenum, as a gastroduodenal fistula. [EU] Gastroenteritis: An acute inflammation of the lining of the stomach and intestines, characterized by anorexia, nausea, diarrhoea, abdominal pain, and weakness, which has various causes, including food poisoning due to infection with such organisms as Escherichia coli, Staphylococcus aureus, and Salmonella species; consumption of irritating food or drink; or psychological factors such as anger, stress, and fear. Called also enterogastritis. [EU] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Glucagonoma: Glucagon-secreting tumor of the pancreatic alpha cells characterized by a distinctive rash, weight loss, stomatitis, glossitis, diabetes,
Glossary 277
hypoaminoacidemia, and normochromic normocytic anemia. [NIH] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Glycopyrrolate: A muscarinic antagonist used as an antispasmodic, in some disorders of the gastrointestinal tract, and to reduce salivation with some anesthetics. [NIH] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Heartburn: Substernal pain or burning sensation, usually associated with regurgitation of gastric juice into the esophagus. [NIH] Helicobacter: A genus of gram-negative, spiral-shaped bacteria that is pathogenic and has been isolated from the intestinal tract of mammals, including humans. [NIH] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hemorrhoids: Varicosities of the hemorrhoidal venous plexuses. [NIH] Heparin: Heparinic acid. A highly acidic mucopolysaccharide formed of equal parts of sulfated D-glucosamine and D-glucuronic acid with sulfaminic bridges. The molecular weight ranges from six to twenty thousand. Heparin occurs in and is obtained from liver, lung, mast cells, etc., of vertebrates. Its function is unknown, but it is used to prevent blood clotting in vivo and vitro, in the form of many different salts. [NIH] Hepatic: Pertaining to the liver. [EU] Hepatitis: Inflammation of the liver. [EU] Hepatocellular: Pertaining to or affecting liver cells. [EU] Hepatomegaly: Enlargement of the liver. [EU] Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU] Hernia: (he protrusion of a loop or knuckle of an organ or tissue through an abnormal opening. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH]
278 Ulcerative Colitis
Hybridization: The genetic process of crossbreeding to produce a hybrid. Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hybridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Hydrocortisone: The main glucocorticoid secreted by the adrenal cortex. Its synthetic counterpart is used, either as an injection or topically, in the treatment of inflammation, allergy, collagen diseases, asthma, adrenocortical deficiency, shock, and some neoplastic conditions. [NIH] Hydrogen: Hydrogen. The first chemical element in the periodic table. It has the atomic symbol H, atomic number 1, and atomic weight 1. It exists, under normal conditions, as a colorless, odorless, tasteless, diatomic gas. Hydrogen ions are protons. Besides the common H1 isotope, hydrogen exists as the stable isotope deuterium and the unstable, radioactive isotope tritium. [NIH] Hyperbaric: Characterized by greater than normal pressure or weight; applied to gases under greater than atmospheric pressure, as hyperbaric oxygen, or to a solution of greater specific gravity than another taken as a standard of reference. [EU] Hyperpigmentation: Excessive pigmentation of the skin, usually as a result of increased melanization of the epidermis rather than as a result of an increased number of melanocytes. Etiology is varied and the condition may arise from exposure to light, chemicals or other substances, or from a primary metabolic imbalance. [NIH] Hypersecretion: Excessive secretion. [EU] Hypertension: Persistently high arterial blood pressure. Various criteria for its threshold have been suggested, ranging from 140 mm. Hg systolic and 90 mm. Hg diastolic to as high as 200 mm. Hg systolic and 110 mm. Hg diastolic. Hypertension may have no known cause (essential or idiopathic h.) or be associated with other primary diseases (secondary h.). [EU] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Ileitis: Inflammation of the ileum. [EU] Ileostomy: Surgical creation of an external opening into the ileum for fecal diversion or drainage. Loop or tube procedures are most often employed. [NIH]
Immunohistochemistry: Histochemical localization of immunoreactive substances using labeled antibodies as reagents. [NIH] Immunosuppressant: An agent capable of suppressing immune responses. [EU]
Incontinence: Inability to control excretory functions, as defecation (faecal i.) or urination (urinary i.). [EU]
Glossary 279
Indicative: That indicates; that points out more or less exactly; that reveals fairly clearly. [EU] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU]
Inhalation: The drawing of air or other substances into the lungs. [EU] Inoperable: Not suitable to be operated upon. [EU] Instillation: . [EU] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Intestinal: Pertaining to the intestine. [EU] Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Jaundice: A clinical manifestation of hyperbilirubinemia, consisting of deposition of bile pigments in the skin, resulting in a yellowish staining of the skin and mucous membranes. [NIH] Lactobacillus: A genus of gram-positive, microaerophilic, rod-shaped bacteria occurring widely in nature. Its species are also part of the many normal flora of the mouth, intestinal tract, and vagina of many mammals, including humans. Pathogenicity from this genus is rare. [NIH] Lectins: Protein or glycoprotein substances, usually of plant origin, that bind to sugar moieties in cell walls or membranes and thereby change the physiology of the membrane to cause agglutination, mitosis, or other biochemical changes in the cell. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of
280 Ulcerative Colitis
function of a part. [EU] Ligation: Application of a ligature to tie a vessel or strangulate a part. [NIH] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Lipophilic: Having an affinity for fat; pertaining to or characterized by lipophilia. [EU] Lipoxygenase: An enzyme of the oxidoreductase class that catalyzes reactions between linoleate and other fatty acids and oxygen to form hydroperoxy-fatty acid derivatives. Related enzymes in this class include the arachidonate lipoxygenases, arachidonate 5-lipoxygenase, arachidonate 12lipoxygenase, and arachidonate 15-lipoxygenase. ec 1.13.11.12. [NIH] Liquifilm: A thin liquid layer of coating. [EU] Localization: 1. the determination of the site or place of any process or lesion. 2. restriction to a circumscribed or limited area. 3. prelocalization. [EU] Lumen: The cavity or channel within a tube or tubular organ. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Megacolon: An abnormally large or dilated colon; the condition may be congenital or acquired, acute or chronic. [EU] Metastasis: 1. the transfer of disease from one organ or part to another not directly connected with it. It may be due either to the transfer of pathogenic microorganisms (e.g., tubercle bacilli) or to transfer of cells, as in malignant tumours. The capacity to metastasize is a characteristic of all malignant
Glossary 281
tumours. 2. Pl. metastases. A growth of pathogenic microorganisms or of abnormal cells distant from the site primarily involved by the morbid process. [EU] Methotrexate: An antineoplastic antimetabolite with immunosuppressant properties. It is an inhibitor of dihydrofolate reductase and prevents the formation of tetrahydrofolate, necessary for synthesis of thymidylate, an essential component of DNA. [NIH] Microbiological: Pertaining to microbiology : the science that deals with microorganisms, including algae, bacteria, fungi, protozoa and viruses. [EU] Microorganism: A microscopic organism; those of medical interest include bacteria, viruses, fungi and protozoa. [EU] Mobilization: The process of making a fixed part or stored substance mobile, as by separating a part from surrounding structures to make it accessible for an operative procedure or by causing release into the circulation for body use of a substance stored in the body. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Motility: The ability to move spontaneously. [EU] Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Mutagenesis: Process of generating genetic mutations. It may occur spontaneously or be induced by mutagens. [NIH] Nasal: Pertaining to the nose. [EU] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neoplasms: New abnormal growth of tissue. Malignant neoplasms show a greater degree of anaplasia and have the properties of invasion and metastasis, compared to benign neoplasms. [NIH] Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuromuscular: Pertaining to muscles and nerves. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Nicotine: Nicotine is highly toxic alkaloid. It is the prototypical agonist at
282 Ulcerative Colitis
nicotinic cholinergic receptors where it dramatically stimulates neurons and ultimately blocks synaptic transmission. Nicotine is also important medically because of its presence in tobacco smoke. [NIH] Occult: Obscure; concealed from observation, difficult to understand. [EU] Octreotide: A potent, long-acting somatostatin octapeptide analog which has a wide range of physiological actions. It inhibits growth hormone secretion, is effective in the treatment of hormone-secreting tumors from various organs, and has beneficial effects in the management of many pathological states including diabetes mellitus, orthostatic hypertension, hyperinsulinism, hypergastrinemia, and small bowel fistula. [NIH] Ophthalmic: Pertaining to the eye. [EU] Opiate: A remedy containing or derived from opium; also any drug that induces sleep. [EU] Osmotic: Pertaining to or of the nature of osmosis (= the passage of pure solvent from a solution of lesser to one of greater solute concentration when the two solutions are separated by a membrane which selectively prevents the passage of solute molecules, but is permeable to the solvent). [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Palliative: 1. affording relief, but not cure. 2. an alleviating medicine. [EU] Pancreas: An organ behind the lower part of the stomach that is about the size of a hand. It makes insulin so that the body can use glucose (sugar) for energy. It also makes enzymes that help the body digest food. Spread all over the pancreas are areas called the islets of Langerhans. The cells in these areas each have a special purpose. The alpha cells make glucagon, which raises the level of glucose in the blood; the beta cells make insulin; the delta cells make somatostatin. There are also the PP cells and the D1 cells, about which little is known. [NIH] Pancreatitis: Inflammation (pain, tenderness) of the pancreas; it can make the pancreas stop working. It is caused by drinking too much alcohol, by disease in the gallbladder, or by a virus. [NIH] Panniculitis: An inflammatory reaction of the subcutaneous fat, which may involve the connective tissue septa between the fat lobes, the septa lobules and vessels, or the fat lobules, characterized by the development of single or multiple cutaneous nodules. [EU] Parasitic: Pertaining to, of the nature of, or caused by a parasite. [EU] Parenteral: Not through the alimentary canal but rather by injection through some other route, as subcutaneous, intramuscular, intraorbital, intracapsular,
Glossary 283
intraspinal, intrasternal, intravenous, etc. [EU] Pathogen: Any disease-producing microorganism. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Pelvic: Pertaining to the pelvis. [EU] Peptic: Pertaining to pepsin or to digestion; related to the action of gastric juices. [EU] Perforation: 1. the act of boring or piercing through a part. 2. a hole made through a part or substance. [EU] Perineal: Pertaining to the perineum. [EU] Peritonitis: Inflammation of the peritoneum; a condition marked by exudations in the peritoneum of serum, fibrin, cells, and pus. It is attended by abdominal pain and tenderness, constipation, vomiting, and moderate fever. [EU] Pharmacist: A person trained to prepare and distribute medicines and to give information about them. [NIH] Pharmacokinetics: The action of drugs in the body over a period of time, including the processes of absorption, distribution, localization in tissues, biotransformation, and excretion. [EU] Pharmacologic: Pertaining to pharmacology or to the properties and reactions of drugs. [EU] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Physiologic: Normal; not pathologic; characteristic of or conforming to the normal functioning or state of the body or a tissue or organ; physiological. [EU]
Plantago: Three different species of Plantago or plantain, P. psyllium, P. ovata and P. indica. The seeds swell in water and are used as laxatives. [NIH] Polypeptide: A peptide which on hydrolysis yields more than two amino acids; called tripeptides, tetrapeptides, etc. according to the number of amino acids contained. [EU] Porphyria: A pathological state in man and some lower animals that is often due to genetic factors, is characterized by abnormalities of porphyrin metabolism, and results in the excretion of large quantities of porphyrins in the urine and in extreme sensitivity to light. [EU] Postprandial: Occurring after dinner, or after a meal; postcibal. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation
284 Ulcerative Colitis
in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH]
Prevalence: The number of people in a given group or population who are reported to have a disease. [NIH] Procollagen: A biosynthetic precursor of collagen containing additional amino acid sequences at the amino-terminal ends of the three polypeptide chains. Protocollagen, a precursor of procollagen consists of procollagen peptide chains in which proline and lysine have not yet been hydroxylated. [NIH]
Proctitis: Inflammation of the rectum. [EU] Proctocolitis: Inflammation of the rectum and colon. [NIH] Prolapse: 1. the falling down, or sinking, of a part or viscus; procidentia. 2. to undergo such displacement. [EU] Propoxyphene: A narcotic analgesic structurally related to methadone. Only the dextro-isomer has an analgesic effect; the levo-isomer appears to exert an antitussive effect. [NIH] Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Pruritus: Itching skin; may be a symptom of diabetes. [NIH] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychogenic: Produced or caused by psychic or mental factors rather than organic factors. [EU] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Psychotherapy: A generic term for the treatment of mental illness or emotional disturbances primarily by verbal or nonverbal communication. [NIH]
Pulmonary: Pertaining to the lungs. [EU]
Glossary 285
Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of the heart as it contracts. [NIH] Pyoderma: Any purulent skin disease. Called also pyodermia. [EU] Quiescent: Marked by a state of inactivity or repose. [EU] Radiography: The making of film records (radiographs) of internal structures of the body by passage of x-rays or gamma rays through the body to act on specially sensitized film. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Rectal: Pertaining to the rectum (= distal portion of the large intestine). [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Reflux: A backward or return flow. [EU] Refractory: Not readily yielding to treatment. [EU] Registries: The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers. [NIH] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Resection: Excision of a portion or all of an organ or other structure. [EU] Respiratory: Pertaining to respiration. [EU] Rheumatoid: Resembling rheumatism. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Saccharomyces: A genus of ascomycetous fungi Saccharomycetaceae, order saccharomycetales. [NIH]
of the
family
Salmonella: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria that utilizes citrate as a sole carbon source. It is pathogenic for
286 Ulcerative Colitis
humans, causing enteric fevers, gastroenteritis, and bacteremia. Food poisoning is the most common clinical manifestation. Organisms within this genus are separated on the basis of antigenic characteristics, sugar fermentation patterns, and bacteriophage susceptibility. [NIH] Sarcoma: A tumour made up of a substance like the embryonic connective tissue; tissue composed of closely packed cells embedded in a fibrillar or homogeneous substance. Sarcomas are often highly malignant. [EU] Scopolamine: An alkaloid from Solanaceae, especially Datura metel L. and Scopola carniolica. Scopolamine and its quaternary derivatives act as antimuscarinics like atropine, but may have more central nervous system effects. Among the many uses are as an anesthetic premedication, in urinary incontinence, in motion sickness, as an antispasmodic, and as a mydriatic and cycloplegic. [NIH] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Senna: Preparations of Cassia senna L. and C. angustifolia of the Leguminosae. They contain sennosides, which are anthraquinone type cathartics and are used in many different preparations as laxatives. [NIH] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Sigmoid: 1. shaped like the letter S or the letter C. 2. the sigmoid colon. [EU] Sigmoidoscopy: Endoscopic examination, therapy or surgery of the sigmoid flexure. [NIH] Species: A taxonomic category subordinate to a genus (or subgenus) and superior to a subspecies or variety, composed of individuals possessing common characters distinguishing them from other categories of individuals of the same taxonomic level. In taxonomic nomenclature, species are designated by the genus name followed by a Latin or Latinized adjective or noun. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of
Glossary 287
activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Sphincter: A ringlike band of muscle fibres that constricts a passage or closes a natural orifice; called also musculus sphincter. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Streptococcus: A genus of gram-positive, coccoid bacteria whose organisms occur in pairs or chains. No endospores are produced. Many species exist as commensals or parasites on man or animals with some being highly pathogenic. A few species are saprophytes and occur in the natural environment. [NIH] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Sucralfate: A basic aluminum complex of sulfated sucrose. It is advocated in the therapy of peptic, duodenal, and prepyloric ulcers, gastritis, reflux esophagitis, and other gastrointestinal irritations. It acts primarily at the ulcer site, where it has cytoprotective, pepsinostatic, antacid, and bile acidbinding properties. The drug is only slightly absorbed by the digestive mucosa, which explains the absence of systemic effects and toxicity. [NIH] Sulfapyridine: Antibacterial, potentially toxic, used to treat certain skin diseases. [NIH] Suppository: A medicated mass adapted for introduction into the rectal, vaginal, or urethral orifice of the body, suppository bases are solid at room temperature but melt or dissolve at body temperature. Commonly used bases are cocoa butter, glycerinated gelatin, hydrogenated vegetable oils, polyethylene glycols of various molecular weights, and fatty acid esters of polyethylene glycol. [EU] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Synergistic: Acting together; enhancing the effect of another force or agent. [EU]
Systemic: Pertaining to or affecting the body as a whole. [EU] Tachycardia: Excessive rapidity in the action of the heart; the term is usually applied to a heart rate above 100 per minute and may be qualified as atrial, junctional (nodal), or ventricular, and as paroxysmal. [EU]
288 Ulcerative Colitis
Tears: The fluid secreted by the lacrimal glands. This fluid moistens the conjunctiva and cornea. [NIH] Telomere: A terminal section of a chromosome which has a specialized structure and which is involved in chromosomal replication and stability. Its length is believed to be a few hundred base pairs. [NIH] Tenesmus: Straining, especially ineffectual and painful straining at stool or in urination. [EU] Thalidomide: A pharmaceutical agent originally introduced as a nonbarbiturate hypnotic, but withdrawn from the market because of its known tetratogenic effects. It has been reintroduced and used for a number of immunological and inflammatory disorders. Thalidomide displays immunosuppresive and anti-angiogenic activity. It inhibits release of tumor necrosis factor alpha from monocytes, and modulates other cytokine action. [NIH]
Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Toxicology: The science concerned with the detection, chemical composition, and pharmacologic action of toxic substances or poisons and the treatment and prevention of toxic manifestations. [NIH] Transdermal: Entering through the dermis, or skin, as in administration of a drug applied to the skin in ointment or patch form. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Tropomyosin: A protein found in the thin filaments of muscle fibers. It inhibits contraction of the muscle unless its position is modified by troponin. [NIH]
Ulceration: 1. the formation or development of an ulcer. 2. an ulcer. [EU] Urology: A surgical specialty concerned with the study, diagnosis, and treatment of diseases of the urinary tract in both sexes and the genital tract in the male. It includes the specialty of andrology which addresses both male genital diseases and male infertility. [NIH] Vaginal: 1. of the nature of a sheath; ensheathing. 2. pertaining to the vagina. 3. pertaining to the tunica vaginalis testis. [EU] Vascular:
Pertaining to blood vessels or indicative of a copious blood
Glossary 289
supply. [EU] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Warfarin: An anticoagulant that acts by inhibiting the synthesis of vitamin K-dependent coagulation factors. Warfarin is indicated for the prophylaxis and/or treatment of venous thrombosis and its extension, pulmonary embolism, and atrial fibrillation with embolization. It is also used as an adjunct in the prophylaxis of systemic embolism after myocardial infarction. Warfarin is also used as a rodenticide. [NIH] Warts: Benign epidermal proliferations or tumors; some are viral in origin. [NIH]
Yersinia: A genus of gram-negative, facultatively anaerobic rod- to coccobacillus-shaped bacteria that occurs in a broad spectrum of habitats. [NIH]
General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna
·
Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna
·
A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna
·
Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna
290 Ulcerative Colitis
·
Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna
·
Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618
·
Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna
·
Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna
·
Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna
·
Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna
Index 291
INDEX A Abdomen ...................15, 33, 34, 281, 287 Abdominal...12, 24, 26, 38, 39, 41, 42, 79, 100, 103, 107, 108, 114, 115, 122, 123, 124, 128, 151, 155, 271, 276, 283 Aberrant.................................................79 Acne ........................................14, 30, 269 Adolescence ..94, 100, 122, 153, 269, 283 Adverse ...............................................111 Alimentary.......30, 33, 122, 124, 270, 271, 279, 282 Alkaline ..................................31, 194, 271 Alleles ....................................................83 Alopecia.................................................65 Anaemia ..............................................227 Analgesic .....................182, 183, 273, 284 Anastomosis ....................15, 19, 117, 138 Anemia .12, 13, 19, 59, 79, 109, 115, 128, 144, 163, 277 Angiography ..........................................69 Anomalies ......................................69, 100 Anorectal ...............................................37 Anorexia ..............................116, 123, 276 Antibiotic ..33, 59, 115, 166, 273, 274, 287 Antibodies....72, 84, 90, 93, 135, 270, 278 Anticholinergic .....................................129 Antigens...............60, 79, 82, 90, 270, 285 Antihypertensive ..................................191 Antioxidant...........................196, 197, 201 Anus .12, 13, 15, 24, 37, 48, 71, 130, 144, 154, 270 Anxiety...................................20, 107, 128 Ascites .........................................100, 101 Assay.....................................................76 Asymptomatic ........................................68 Autoimmunity.........................................36 B Bacteria ..... 33, 75, 79, 82, 91, 92, 93, 94, 96, 114, 123, 124, 125, 154, 166, 222, 273, 275, 277, 279, 281, 285, 287, 289 Barium .......13, 66, 69, 144, 151, 152, 155 Bereavement .......................................121 Bezoars ...............................................100 Bile......31, 87, 90, 93, 118, 154, 183, 200, 271, 272, 279, 287 Biliary.....................................73, 101, 118 Biochemical .............89, 93, 192, 269, 279 Biopsy............13, 27, 65, 66, 68, 114, 155 Buccal ......................................64, 90, 271 Budesonide............................................16
C Cadaver ................................................ 80 Capsules ............................................. 225 Carbohydrate ................................ 80, 224 Carcinoma............................... 37, 68, 101 Causal................................................... 70 Caustic ................................................ 100 Chlorella.............................................. 191 Cholangitis ...... 12, 65, 101, 118, 119, 140 Cholecystectomy ................................ 119 Cholelithiasis....................................... 119 Cholesterol.................................. 222, 224 Chromosomal ................... 75, 82, 97, 288 Ciprofloxacin ....................................... 154 Cirrhosis.................................. 12, 28, 101 Clarithromycin ..................................... 154 Collagen..... 32, 90, 91, 95, 272, 273, 278, 284 Colonoscopy .... 13, 16, 37, 65, 66, 68, 69, 108, 111, 144, 151, 152, 197 Colorectal...... 23, 37, 65, 66, 83, 101, 152 Concomitant........................................ 134 Constipation ............ 27, 37, 100, 124, 283 Curative....................................... 238, 281 Cutaneous....................... 64, 94, 110, 282 Cytokines ............................ 77, 79, 82, 87 Cytomegalovirus ................................. 114 D Defecation............... 25, 71, 117, 202, 278 Degenerative ...................... 123, 223, 275 Dehydration............................. 14, 68, 153 Diarrhea .... 11, 12, 14, 24, 26, 38, 39, 41, 42, 100, 103, 109, 115, 116, 128, 129, 144, 151, 153, 154, 155, 157, 222 Digestion .... 25, 33, 74, 89, 123, 124, 269, 274, 283, 287 Dilatation ............................................. 114 Disposition .......................................... 107 Distal ........... 30, 33, 67, 68, 102, 270, 285 Diverticulum .......................... 71, 123, 274 Duodenum ..... 12, 67, 90, 120, 123, 271, 276 Dyspepsia ........................................... 101 Dysplasia . 16, 65, 66, 68, 82, 83, 88, 139, 163, 196, 197 E Elective ............................................... 117 Electrolyte ..................... 87, 109, 238, 284 Encephalopathy .................................. 101 Encopresis .......................................... 100 Endoscopy ................ 27, 66, 69, 129, 155
292 Ulcerative Colitis
Endothelium...........................................64 Enema .13, 14, 16, 66, 128, 144, 155, 266 Enzyme............91, 95, 146, 275, 280, 284 Epithelium..............................................72 Erythema ...............................................65 Esophagitis ..................................183, 287 Exogenous.....................................92, 275 F Faecal ..........................................200, 278 Fatigue.............30, 41, 103, 144, 155, 271 Fats..90, 93, 222, 238, 271, 272, 276, 280 Fibrosis ............................31, 91, 100, 273 Fissure.............................................37, 71 Fistula ......19, 32, 37, 123, 131, 155, 276, 282 Flatulence ............................116, 128, 153 Fluorescence ...........................82, 92, 276 G Gastritis ...........................69, 87, 183, 287 Gastroduodenal ...................119, 123, 276 Gastroenteritis .............................124, 286 Gluten ..................................................101 Gout .......................................................85 H Heartburn...............................................14 Hematology ...........................................10 Hemorrhage...............64, 68, 73, 100, 101 Hemorrhoids ......................37, 69, 71, 157 Heparin ............................16, 73, 138, 140 Hepatic ................................................101 Hepatitis...................12, 28, 100, 101, 121 Hepatocellular......................................101 Heredity .................................................19 Hernia ..................................................100 Hormones ..................60, 77, 91, 273, 285 Hybridization....................................75, 82 Hydrocortisone ......................................14 Hydrogen ...............90, 116, 124, 272, 278 Hyperbaric ...............................74, 92, 278 Hypertension .........14, 131, 191, 194, 282 I Idiopathic ...................4, 32, 118, 227, 278 Ileitis ................................................11, 26 Ileostomy ..14, 15, 19, 20, 23, 24, 67, 117, 139, 153, 155 Immunohistochemistry ..........................78 Immunosuppressant ........59, 94, 276, 281 Incontinence ..................37, 129, 183, 286 Indicative .................96, 97, 135, 287, 288 Induction ........................................78, 134 Infiltration ...............................................68 Ingestion ......................................100, 225 Instillation.............................................194 Intermittent.............................................73
Intestinal..... 11, 12, 26, 38, 40, 41, 82, 91, 92, 93, 103, 109, 116, 117, 119, 124, 140, 151, 201, 222, 273, 277, 279, 280 Intestines.. 11, 13, 90, 114, 123, 154, 155, 156, 157, 271, 276 J Jaundice........................................ 64, 100 L Lectins................................................... 80 Lesion ............................. 59, 92, 275, 280 Ligation ................................................. 71 Lipid .................................... 119, 191, 199 Lipophilic ............................................... 77 Localization ..................... 93, 94, 278, 283 Lumen ................................................... 66 M Malabsorption ..................... 100, 156, 162 Malignant ... 48, 59, 64, 96, 122, 271, 272, 280, 286 Mediator .............................................. 199 Metastasis....................... 48, 94, 280, 281 Methotrexate ................................. 73, 154 Microbiological ...................................... 79 Microorganism ................ 30, 94, 270, 283 Molecular . 10, 32, 34, 37, 60, 79, 81, 148, 160, 161, 277, 285, 287 Motility................... 81, 100, 112, 129, 196 Mucus ................................................... 11 Mutagenesis ......................................... 76 N Nasal..................................................... 64 Nausea.... 12, 14, 116, 120, 123, 155, 276 Neoplasms ................ 37, 48, 65, 100, 281 Neoplastic ........... 32, 76, 81, 83, 201, 278 Neural ................................................. 223 Neuromuscular ................................... 129 Niacin .................................................. 223 Nicotine ......................................... 16, 157 O Occult...................................... 69, 76, 152 Octreotide ........................................... 129 Opiate ................................................. 196 Osmotic............................................... 129 Osteoporosis......................... 12, 153, 154 Overdose ............................................ 223 P Palliative.............................................. 118 Pancreas................... 59, 64, 94, 100, 282 Pancreatitis ................... 65, 100, 101, 119 Panniculitis............................................ 65 Parenteral ................... 100, 113, 119, 153 Pelvic ............................................ 23, 110 Peptic .................................. 119, 183, 287 Perforation ...... 24, 73, 109, 114, 123, 274 Peritonitis ............................................ 101 Pharmacist .................................. 172, 181
Index 293
Pharmacokinetics ..................................77 Pharmacologic.......................34, 202, 288 Phenotype ...............................81, 95, 283 Physiologic ......32, 60, 108, 117, 276, 285 Polypeptide......................92, 95, 278, 284 Porphyria ...............................................64 Postoperative.......................................157 Postprandial.........................................119 Potassium............................................224 Precursor .................................84, 95, 284 Prednisone ........................16, 21, 73, 119 Prevalence.......................21, 89, 108, 119 Procollagen....................................95, 284 Proctitis ....................11, 67, 102, 106, 152 Proctocolitis .....................................4, 227 Prolapse ................................................37 Proteins ..91, 92, 117, 191, 222, 224, 273, 278 Pruritus ............................................64, 71 Psychiatric .....................................20, 202 Psychiatry ..............................................33 Psychogenic ........................................194 Psychotherapy.......................................88 Pulmonary .....................................97, 289 Pulse....................................................150 Pyoderma ..............................................65 Q Quiescent ..............................................68 R Radiography ..........................66, 108, 114 Receptor ..........................77, 82, 135, 141 Rectal ...24, 27, 34, 37, 67, 69, 71, 74, 79, 82, 110, 128, 144, 151, 155, 194, 199, 227, 287 Recurrence ..............................22, 68, 157 Reflux ..........................100, 101, 183, 287 Refractory ......77, 113, 115, 117, 135, 140 Registries...............................................39 Remission....... 21, 26, 33, 68, 73, 78, 86, 103, 108, 109, 110, 112, 113, 114, 115, 116, 144, 150, 192, 200, 285 Resection.....................................109, 155 Respiratory ..................................165, 272 Riboflavin.............................................222
S Sarcoma................................................ 64 Secretion.. 33, 59, 60, 131, 269, 278, 281, 282, 286 Selenium ............................................. 224 Senna.......................................... 183, 286 Serum ..... 81, 96, 119, 124, 191, 283, 286 Sigmoid ................................... 66, 96, 286 Sigmoidoscopy .... 69, 114, 129, 144, 151, 152 Species ...... 79, 91, 93, 95, 96, 114, 123, 201, 261, 272, 273, 275, 276, 279, 283, 286, 287 Spectrum................. 10, 84, 111, 125, 289 Sphincter..................................... 124, 287 Stomach... 12, 32, 59, 67, 69, 79, 92, 100, 120, 123, 276, 282 Subclinical........................................... 119 Sulfapyridine ......................................... 14 Suppository ............................. 14, 34, 287 Symptomatic ................. 96, 154, 191, 287 Synergistic ............................................ 81 Systemic ... 25, 74, 97, 111, 183, 287, 289 T Tachycardia .......................................... 68 Tears..................................................... 69 Tenesmus ............................................. 67 Thermoregulation................................ 222 Thyroxine ............................................ 224 Topical .............. 71, 73, 97, 152, 154, 288 Toxicity.................. 77, 113, 183, 192, 287 Toxicology..................................... 10, 149 Transplantation ........... 100, 101, 118, 134 Tropomyosin ......................................... 72 U Ulceration.......................... 22, 40, 73, 120 Urology.................................................. 10 V Vaginal .......................................... 34, 287 Vascular ............................ 64, 68, 69, 111 Viral............................................... 27, 289 Viruses .................................... 28, 94, 281 W Warfarin ................................................ 69 Warts..................................................... 37
