A guide for Crohn’s and Colitis patients


In 1995 I was diagnosed with Crohn’s disease. The doctors explained that the stomach pains that I had recently been experiencing as well as the tiredness, temperatures and diarrhea, were all symptoms of the disease. They added that it was a chronic inflammatory disease of the digestive system that mainly affects the intestines.

“What do I do?” I asked.
“Don’t eat fresh fruit and vegetables or spicy foods, and take pills every day,” they replied. 
“And what else?”
“That’s it, more or less… Good luck.”

The first thing that crossed my mind was that it was true that for a long time I had diarrhea and had been tired. It seemed that I had learned to live with it. Okay – so at least now I have a certificate and I’m not a hypochondriac. There was almost no information about the disease itself. I therefore assumed that nothing would happen if I were to continue living and eating normally. When I used to eat junk food, I would go a little more often to the toilet. So what? I was used to it.

It was only five years later in the city of Cuzco in Peru when I had my first real attack, that I began to understand in the most trying way that this matter that needed a little more attention.

Today I’m thirty-five years old. In the twenty years since I was diagnosed as a Crohn’s patient, I tried nearly every possible medication for the disease. I was treated by tens of alternative practitioners with various approaches, and went through countless check-ups and one operation. And it was after the operation that I decided to write this book in order to help Crohn’s patients avoid reaching the point at which surgical intervention is required.

During the years I have gathered experience that today helps me take more enlightened decisions with regard to my lifestyle and the ways of handling my disease. At the end of the day, every patient needs to consider independently for himself questions such as which medications to consume, what to eat, where to work, or whether to undergo an operation. If I could have had the benefit of others' knowledge and experience twenty years ago, there is no doubt that I would not have needed the operation. If I had been aware of the extraordinary difficulties that my body would find itself in as a result of the disease – a disease that at the outset doesn’t seem particularly threatening – I would have done anything to avoid them.
Crohn’s disease does not bode the end of the world. It’s definitely possible to live with it. The question is what the quality of that life will be – in other words, to what degree can the patient live a normal life?

I have never thought of not living my life the way I want to, despite those periods when I suffered badly from the disease. Over the years I’ve learned to understand the limitations imposed by the disease and to live within their bounds. The wiser I became in living my life more correctly, the less apparent the disease became. My quality of life improved and the framework of my capabilities widened. During my years as a Crohn’s patient I have managed to travel, to finish my studies in electrical engineering at Tel Aviv University, to marry, and even to turn into a young father. Today I work full-time at a company that works in program development. Of course this doesn’t necessarily mean that my condition only ever improves. My life is a series of ups and downs. But I learn from my own experience all the time, and do my best to monitor the status of my health on a continuous basis.

My personal experience and the research I’ve done demonstrate two main points concerning the information that is given to the Crohn’s patient about the disease. The first is the lack of certified information. It’s true that the internet has created a revolution that led to the instantaneous sharing of knowledge on an immense scale. In fact, today every patient can be helped in forums and other sites to search for information on his disease and various means of treatment. Having said that, stories and advice from patients in internet chats cannot cover for the lack of certified information, whether it be on the internet or at a clinic close to your home. As close as personal stories may be to that of an anonymous patient thirsty for any piece of information and advice, they cannot diagnose his disease, and cannot recommend its correct treatment. This is especially true when dealing with incurable diseases, like Crohn’s disease, that force the patients to pursue alternative treatments and compel them to adjust to an unfamiliar lifestyle.

If the one side of the problem is the lack of certified information, then the other is an abundance of false information. This kind of information is partially caused by people who in all innocence want to help, but do not know how. They might be relatives, or merely acquaintances who experienced abdominal upsets at the end of the sixties, something that has conferred on them honorary doctorates in various gastroenterological diseases. Alternatively they might be practitioners who have completed a two-week advanced study course that has given them the ability to heal you of any disease. The second aspect of the false information arises from various greedy people like those who will sell you potions, treatments and any other thing they feel like to achieve one thing – money. False information can reach you in every possible way – especially if you are desperate for answers and are experiencing the darkness of the lack of knowledge. Where the false information comes from makes absolutely no difference. What is important is to identify it. If, God forbid, you allow it to confuse you, the monetary damage will be child’s play compared with the damage to your health.

The aim of this book is to bring you the information that I have gathered from my own experience and from in-depth research that includes interviews with many highly-esteemed professionals. It is meant to give tools to the patient to deal with the disease, and with the decisions that need to be taken throughout life as a result of it. I have done my best to use simple language as far as possible so that even the younger among us will be able to follow and understand. The humor that runs though many parts of the book is not there just to provide enjoyment in the reading. It is actually an inseparable part of the positive approach that patients need to adopt in order to improve the state of their health.  Naturally no-one should infer from it any disregard or recklessness concerning the seriousness of the disease. I know as well as anyone how much suffering can be caused by it. At the same time it provides many situations which, if you were not personally involved in them, would seem extremely funny.

The book deals mainly with Crohn’s disease. After all, that is the disease that I know (and love). At the same time, I’m certain that most of the information that appears in it can serve patients of other intestinal diseases like Colitis that is also an incurable chronic inflammatory disease with symptoms and methods of treatment that greatly resemble those of Crohn’s disease.

This book is intended for you as a Crohn’s or Colitis patient, and for your family members who help you to deal with it. The information in it is not intended to be a substitute for the professional advice of a treating doctor, but rather to be a gateway to existing information about the disease. It has been written in the hope that it will be useful in helping you to make better choices concerning your nutrition, lifestyle, therapist and alternative medical treatment that suits you and to provide you with sources of information upon which you can rely. Apart from this you will be able to learn about the approach of western conventional medicine to Crohn’s disease and Colitis and their diagnosis and methods of treatment.

I am certain that by the time they have finished reading it, every family member will know more about the character of the disease that the patient has to deal with, and that every patient will have a growing sense that it is within his or her power to improve their health.

Every word of what follows has been written in blood, sweat and not a little gas.


No comments:

Post a Comment

Note: Only a member of this blog may post a comment.