Microscopic Colitis: Revised Edition

By Wayne Persky

Many gastroenterologists refer to microscopic colitis as a nuisance disease with a benign course. Some doctors seem to confuse it with IBS and they try to treat it as though it were IBS. For many patients though, the disease proves to be debilitating and life-altering, and the treatment options offered by one's doctor may not provide effecti

• Language: English
• Publisher: Persky Farms
• Release date: Mar 5, 2018
• ISBN: 9781732079212

Wayne Persky

Wayne Persky was born, grew up, and currently lives in Central Texas. He is a graduate of the University of Texas at Austin, College of Engineering, with postgraduate studies in mechanical engineering, mathematics, and computer science. He has teaching experience in engineering, and business experience in farming and agribusiness. He has 20 years of experience researching published medical research articles to discover novel ways to resolve health issues that are inadequately treated by mainstream medicine.Microscopic colitis (MC) is an inflammatory bowel disease more widespread than Chron's disease, yet the most popular medical treatment used by doctors results in an 85 % relapse rate. He promotes treating MC by diet changes, with a better than 95 % success rate. Over 15 years ago he founded and continues to administrate an online MC discussion and support board. In 2015 he founded the Microscopic Colitis Foundation, and he continues to serve as it's president and as a contributing author to the Foundation's Newsletter. He lives on a farm in Central Texas, where he continues to do research and write.

Book preview

Microscopic Colitis

Other books by this author

Vitamin D and Autoimmune Disease

Pancreatic Cancer

Understanding Microscopic Colitis

Microscopic Colitis

Revised Edition

Wayne Persky

Persky Farms

United States

First published and distributed in the United States of America by:

Persky Farms, 19242 Darrs Creek Rd, Bartlett, TX 76511-4460. Tel.: [phone]; Fax: [phone]. www.perskyfarms.com

Copyright: This book is protected under the US Copyright Act of 1976, as amended, and all other applicable international, federal, state, and local laws. All rights reserved. No part of this book may be reproduced by any mechanical, photographic, or electronic process, or in the form of an audio recording, nor may it be transmitted or otherwise copied for public or private use, other than the fair use purposes allowed by copyright law, without prior written permission of the publisher.

Disclaimer and Legal Notice: The information contained in this book is intended solely for general educational purposes, and is not intended, nor implied, to be a substitute for professional medical advice relative to any specific medical condition or question. The advice of a physician or other health care provider should always be sought for any questions regarding any medical condition. Specific diagnoses and therapies can only be provided by the reader’s physician. Any use of the information in this book is at the reader’s discretion. The author and the publisher specifically disclaim any and all liability arising directly or indirectly from the use or application of any information contained in this book.

Please note that much of the information in this book is based on personal experience and anecdotal evidence. Although the author and publisher have made every reasonable attempt to achieve complete accuracy of the content, they assume no responsibility for errors or omissions. If you should choose to use any of this information, use it according to your best judgment, and at your own risk. Because your particular situation will not exactly match the examples upon which this information is based, you should adjust your use of the information and recommendations to fit your own personal situation.

This book does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned anywhere in the book. This information is provided for educational purposes, and reliance on any tests, products, procedures, or opinions mentioned in the book is solely at the reader’s own risk.

Any trademarks, service marks, product names, or named features are assumed to be the property of their respective owners, and are used only for reference. There is no implied endorsement when these terms are used in this book.

Copyright © Wayne Persky, 2018. All rights reserved worldwide.

ISBN 978-1-7320792-1-2

Dedication

This book is dedicated to the memory of Sally Read, who was a visionary and one of the first people to utilize an Internet discussion board to share her experiences with others who had been diagnosed with microscopic colitis. Apparently the earliest Internet source of support for people diagnosed with the disease was created by Judy Malinowski, who founded a newsletter service known as the MC/CC Club, back in August of 1995. Archives of posts to her site can be found at the URL below:

http://web.archive.org/web/20030506015942/http://www.malinowski.com/colitis.htm

Of course, Sally was a member of the MC/CC Club. After six or seven years, Judy began to devote her time to writing books on snorkeling; her last newsletter was posted on February 23, of 2003. In order to provide a place for patients with microscopic colitis to continue to meet online, to share experiences and support, Sally created a website and added what was arguably the first true discussion forum about this disease.

She was truly one of the pioneers of the concept of Internet discussion and support groups dedicated to finding treatment solutions for a disease that was considered in those days to be rare, and for which no long-term treatment that was both safe and reliable was available, at the time of her diagnosis back in 1999. Her personal story can be read at the URL below:

http://web.archive.org/web/20021203062107/www.microscopiccolitis.org/sallyread/id9.html

Sally’s efforts helped to pave the way for all of the discussion forums dedicated to the support of patients who have microscopic colitis that followed. Her open-minded approach and the atmosphere of compassion and unconditional love that she maintained on her website helped to make life easier for countless others who found themselves walking the same path, trying to find support, and searching for ways to control their symptoms when their doctors were unable to help them. Those of us who have microscopic colitis owe both Judy Malinowski and Sally Read a huge debt of gratitude, for their pioneering efforts to make life easier for others suffering from the disease.

Sally left this world in December of 2009. Those of us who knew her can’t help but wonder if the massive heart attack that took her life might have been associated with the side effects of years of treatment with corticosteroids that she took to control her microscopic colitis symptoms. She died far too young but she left a legacy of happy memories in our hearts. We are so grateful that she shared a part of her life with us. The inspiration and the hope that she brought to those of us suffering from what seemed to be a hopeless disease, and the empathy for others that she taught us, is priceless.

Contents

Introduction

Chapter 1

Description of the Disease

Chapter 2

What Causes the Disease?

Chapter 3

Diagnosing the Disease

Chapter 4

Conventional Treatment Methods

Chapter 5

Conventional Treatment Effectiveness

Chapter 6

Treatment by Diet

Chapter 7

Food Allergies Versus Food Sensitivities

Chapter 8

Are These Foods Really Healthy?

Chapter 9

Health Risks of Gluten

Chapter 10

An Immune System Quirk

Chapter 11

Processed Foods, Labeling and Home Cooking

Chapter 12

Eating Away From Home

Chapter 13

Developing a Safe Diet

Chapter 14

Difficult Cases — Mast Cells and Satellite Issues

Chapter 15

Hope for the Future

Chapter 16

Could Microscopic Colitis Actually be Caused by Stress?

References

Acknowledgments

About the Author

Appendix

Alphabetical Index

Introduction

The disease known as microscopic colitis, in all of its various forms, including lymphocytic colitis, collagenous colitis, and less common forms, has been frequently misunderstood, misdiagnosed, under-diagnosed, and inadequately treated ever since it was first described several decades ago. And now that a new version, named mastocytic enterocolitis, has been added to the list, it has become even more misunderstood and inadequately treated. Even though the inflammation is not readily visible to the naked eye (as is commonly the case with the other inflammatory bowel diseases), microscopic colitis is indeed an inflammatory bowel disease (IBD). Unfortunately, it seems to receive only a tiny fraction of the attention devoted to the other types of IBD. This seems remarkable in view of the fact that recent evidence suggests that microscopic colitis (MC) is at least as common as Crohn’s disease, and much more common than celiac disease. And yet a search of the literature will turn up reams of information about Crohn’s disease and celiac disease, but comparatively far less accurate and reliable information about MC.

This is probably due to the fact that many physicians (and the major medical institutions) have historically considered it to be a rare disease, based on it’s original description. Because of that, medical training concerning the disease has tended to be inadequate, and even today, some gastrointestinal (GI) specialists seem to be only vaguely familiar with the details of the disease. If you do a search of the Internet, for example, you will find that most hospitals and non-profit support organizations that specialize in information and support for patients who have an IBD, tend to de-emphasize microscopic colitis in their discussion, and typically they provide only a relatively brief description, almost as though the information has been added as an afterthought.

Some appear to even question whether microscopic colitis qualifies as an inflammatory bowel disease. Most medical professionals view it as primarily a nuisance disease. Consequently, many patients are surprised to discover that, after they receive their diagnosis, their gastroenterologist typically offers only a very brief description of the disease and a vague hint of the prognosis. Some patients receive only the diagnosis and no explanatory information at all. In some cases, the patient is advised that the disease will resolve on its own in a matter of months, without the need for any medical intervention. Most patients leave their doctor’s office wishing that they had much more information and guidance about the details of treating their symptoms and living with the disease.

Unfortunately, many victims of the disease find that rather than it being a nuisance disease, microscopic colitis tends to impose life-altering effects, and in some cases, it can develop into a very debilitating disease. Often, it causes painful and humiliating symptoms, leaving those who have the disease afraid to stray very far from their bathrooms, and unable to pursue their normal routine, including work and social events.

Because of their difficulties in trying to lead a normal life, many patients may find themselves frustrated with the limited effectiveness of the treatment program prescribed by their doctor. They may go from doctor to doctor, hoping to find a specialist who might be able to help them to control their symptoms. Or, they may eventually give up on trying to find help and either resign themselves to trying to live with the symptoms, or they may try to control their symptoms by means of their own ingenuity, using trial and error, and whatever resources they can discover on their own. Sadly, many patients with MC, have even been advised by their doctors to just learn to live with the symptoms.

Thanks to the widespread availability of Internet access and the sharing of information there, it is becoming increasingly easier for patients who happen to have a disease that seems to fall through the cracks of mainstream medicine to locate information based on the personal experiences of other patients who have the disease. And often, others have found better ways of dealing with it, and they have been able to resolve their symptoms, even in cases where their doctors were unable to provide very much help for them. Accordingly, rather than suffer in silence after their doctors run out of helpful ideas, many victims of MC are finding ways to improve their quality of life, outside of the medical system.

As we all know, the Internet is full of information. Some of it is good, but much of it is useless or even harmful. The trick, obviously, is to separate the valid information from the garbage. Generally, no one completely and accurately understands this disease and the profound effect that it can have on one’s lifestyle unless they actually have the disease themselves, and they have to live with it on a daily basis. Of course, statistically, precious few gastroenterologists have microscopic colitis, so very few of them truly appreciate just how debilitating it can be, and unfortunately, many of them appear to view the disease as just a little diarrhea.

Because of these circumstances, in many cases it can be very beneficial to seek out others who have the disease, who have been living with it for years, and who have found ways to control their symptoms by taking control of their own treatment program. GI specialists are becoming better at diagnosing the disease, and they are slowly learning better ways to treat the disease as well, but in many such practices, the treatment methods currently being offered, and the information and support available to MC patients, often leaves a lot to be desired. Patients are frustrated, and sick and tired of being sick and tired; they just want their life back.

At various medical institutions, and among various medical practices, there seem to be wide variations in expertise and understanding of the disease, and in the treatments offered. While some GI specialists are learning improved ways to treat the disease, others seem to be confused, and a few even seem to be unwilling to explore ways to improve their treatment methods. In general, one has to be open-minded and willing to think out of the box when conventional treatment methods fail to resolve the symptoms of a disease that is poorly understood.

With all of the foregoing information in mind, this book is a compilation of the experiences and knowledge gained by the author, while developing, administering, and participating in an Internet discussion and support group, for members who have collagenous colitis, lymphocytic colitis, or any of the other forms of MC, and other issues that are frequently associated with the disease. I am not a medical professional. In fact, my education is in engineering, mathematics, and computer science, not medicine.

At one time, almost 20 years ago, I was so sick that I truly thought that I had only a few years left to live. I had been through every applicable test offered by the best clinic in the area where I lived, and my gastroenterologist had advised me that there was nothing wrong with me. I felt hopeless and alone. So I started doing research on the Internet, and I continued to search and study, until one day it dawned on me, that despite all the conflicting information that was listed on the websites of the major medical institutions, my problem had to be related to something in my diet. It took many months of trial and error testing, and detailed records of meals and snacks, and how I reacted to them, but eventually I figured out all the problems with my diet and managed to resolve all the symptoms.

As far as I am aware, this is the first book ever written specifically about microscopic colitis. The disease is briefly mentioned in a few other books about digestive system issues, but to the best of my knowledge, as of the date when this book was first published, no other books have previously been dedicated to a detailed discussion of the disease and ways to effectively treat it. Hopefully the information in this book will inspire others to study the disease and develop more effective ways to treat it.

Most medical studies involving microscopic colitis are based on relatively small numbers of patients, because accurate and detailed information about this disease is still somewhat limited in the medical literature. By contrast, with many hundreds of discussion board members living with the disease on a daily basis and freely sharing their experiences and their hard-earned personal knowledge of the disease, an extremely valuable database has evolved, based on firsthand information about the practical aspects of living with the disease and controlling its symptoms. By such candid sharing of information, we’re able to learn which techniques actually work most of the time in the real world, and which treatments rarely seem to work.

Gastroenterologists generally haven’t been able to compile information of this scope about the disease because not only do they not have time for this level of record keeping, but many patients eventually become frustrated with their doctor’s lack of helpful suggestions, and after a while, they simply stop going back. When a patient stops going back, some GI specialists seem to just assume that the patient was cured, and so they make that notation in the patient’s files, and they consider the case to be successfully resolved. When that happens, another microscopic colitis case has fallen through the cracks in the medical system.

That means that Internet discussion and support groups dealing with MC tend to involve many of the more difficult cases — the ones that have not been able to find successful resolution of their symptoms from within the medical system. This book, therefore, is based on the knowledge gained from approximately two decades of sharing ideas, insights, and experiences associated with the control of the symptoms of microscopic colitis, as experienced by those who live with the disease daily, and who have learned how to control the disease so that it does not control their lives.

How to use this book

Since microscopic colitis is a much more complex and far-reaching disease than is generally understood by the medical community, and since there is no single treatment approach that works well for everyone, the more we can learn about the disease and the treatment options, the easier it will be for those of us who have the disease to develop a more effective personal treatment program. From that perspective, it should be helpful to read all of the chapters in this book, in the order in which they are presented.

If you have already done a lot of research and you feel sufficiently familiar with all of the background information about the disease, and you are especially impatient to get on with learning about the effectiveness of various approaches to treating the symptoms of the disease, then you have the option of skipping to Chapter four, (Conventional Treatment Methods). This will allow you to review the most common treatment methods currently recommended by many gastroenterologists.

In Chapter five (Conventional Treatment Effectiveness), you can review the general consensus of opinion of hundreds of patients who have actually tried these drugs, in a real-life setting, to provide a basis for comparing the relative effectiveness of the various drugs used for treating MC. This information should provide some valuable insight that may be helpful for making decisions about which drugs might be the best choices for consideration, rather than just accepting the first treatment suggestion offered by your doctor.

For some unknown reason, there seems to be a lot of extremism in the treatment options prescribed for this disease. While some GI specialists appear to be overly cautious about the drugs that they prescribe to treat this disease, others don’t seem to hesitate to casually prescribe the most powerful drugs available, seemingly in total disregard of any risks of side effects that the patient might incur. Prudence suggests that some of the drugs in this category should only be considered as a last resort for severe cases that have been found to be refractory to more conventional treatments.

Note that as of the date of this updated edition, there are still no drugs specifically labeled for use to treat microscopic colitis. All of the drugs prescribed by doctors to treat this disease were approved by the FDA for treating other diseases, so when a doctor prescribes them to treat microscopic colitis, this amounts to an off-label use.

If drugs are not your cup of tea (since using any drug obviously carries some risk of developing adverse side effects), then you should find the information in Chapter six, (Treatment by Diet), to be a welcome alternative. This chapter deals with treating microscopic colitis by diet changes alone, or diet changes combined with medications, and it discusses various ways to determine which diet changes typically need to be made in order to achieve remission from symptoms. For the most severe cases, a combination of a medication and diet changes may be necessary in order to expedite remission, or to completely control all symptoms, and this possibility is also discussed.

Anyone who has the disease and is interested in trying to control their symptoms by making diet changes should find the information in chapter seven (Food Allergies Versus Food Sensitivities) to be very helpful, since it describes the differences between food allergies and food sensitivities, and how they affect us. In chapter eight, you will learn that despite the fact that they are promoted as healthy and nutritious, the foods that cause most food sensitivity issues are actually not very healthy at all. They are simply the beneficiaries of very good advertising campaigns.

The information presented in chapter nine is very important and should be carefully read, since it explores the reasons why certain health issues have been overlooked and undertreated for thousands of years. And a lot of illuminating scientific research is discussed, concerning the similarities between celiac disease and microscopic colitis, plus other information that should help in understanding this disease, living with it, and controlling the symptoms.

Chapters 10 and 11 contain additional insight into our immune system, and more supporting information on dealing with day-to-day issues that we may encounter. Chapter 12 deals with guidelines and tips to keep our meals safe when we eat away from home, including when traveling, and chapter 13 provides guidelines for developing a safe diet plan based on individual requirements.

Chapter 14 contains detailed information on ways to treat the most difficult cases when conventional treatments are unsuccessful. Chapter 15 is devoted to current research, some of which hopefully should lead to improved, or at least alternate treatment options, in the future.

And finally, in chapter 16, I explain my own personal theory of how and why microscopic colitis actually develops. You should find this discussion illuminating, since it appears that this might possibly explain how all autoimmune diseases develop.

If you should decide to skip some chapters (or read them later), I suggest that you at least read the summaries at the end of each chapter. That way you will have this basic information in mind as you read the subsequent chapters.

Dealing with your doctors

By the time you finish reading this book, you should know more about microscopic colitis and effectively treating the disease than probably at least 90 % of the GI specialists in the world. Accordingly, you will find that currently many GI specialists still do not believe that diet changes can be beneficial for treating microscopic colitis, and regardless of how much evidence you might show them, many of them will not only not believe you, but they will take offense if you press the issue.

Please be aware that they don’t take this position in order to be obstinate. They follow this policy because this is the way that they were trained, and without adequate and reliable research results on which to base any policy changes, they are reluctant to abandon their training and enter uncharted waters.

As you will learn as you read this book, however, their position is incorrect and untenable, as proven by scientific research, and by the empirical data accumulated by hundreds of microscopic colitis patients who have successfully used diet changes as their pathway to remission. Therefore, discretion is sometimes called for in your dealings with your gastroenterologist. Some doctors are willing to think out of the box, and learn from, or with their patients, but be aware that many GI specialists may become downright hostile when a patient tries to convince them that the symptoms of microscopic colitis can be controlled by diet, because that concept may not have been a part of their professional training.

Before you burn any bridges, please remember that you may continue to need a doctor’s services for prescriptions, tests, or a professional opinion on other issues. Therefore, tread lightly, be considerate of their feelings, and try to avoid antagonizing your doctor if she or he disagrees with your views on treating the disease. Hopefully, your doctor may be open to your suggestions and ideas, but if there are disagreements, please don’t allow yourself to appear overbearing, and/or disrespectful, since that will get you nowhere, except maybe out the door.

Of course, if you find yourself extremely frustrated with your dealings with your doctor,