"The Angry Gut; Coping with Colitis and Crohn's Disease"
by W. Grant Thompson, M.D.
This is a technical overview of IBD covering anatomy, how the gut works, history and epidemiology, possible causes, treatments and complications and medications (not entirely up to date as the book was published in 1989).
The book claims in it's foreword to be written for the layman, but be forewarned the anatomy chapter is quite detailed with lots of medical terminology. Let's put it this way, after reading this chapter you will be able to understand the research reports in the national newsletter! (Do you know the difference between your sub-mucosa and your myenteric plexus?) The remainder of the book is more 'reader-friendly' with lots of good information for the newly diagnosed.
Interesting statistics included the fact that, in Europe and North America, the incidence (number of new cases per year) of IBD is 15-20 per 100,000, and the prevalence (number of sufferers) is 150 to 200 per 100,000. That translates into statistics for Victoria (population @ 350,000) of 52 to 70 new cases per year and 525 to 700 sufferers. No wonder the gastros are so busy! The good news is that a study of Crohn's patients in Copenhagen showed that any one time, 45% were in complete remission and another 25% had a low level of activity. 75% were able to work normally, and mortality was no different than the general population. The statistics for Ulcerative Colitis were even better as many were 'cured' permanently by a colectomy.
This is a good information book, although the title is somewhat mis-leading as not much was covered as to "coping" with it.
"Your Gut Feelings; A Complete Guide to Living Better with Intestinal
by Henry D. Janowitz, M.D.
This is a more general book covering other intestinal problems besides IBD, such as irritable bowel syndrome, diverticulosis, colon cancer, food allergies, the aging gut, gas, effects of medications on the gut, and the brain-gut connection. The illustrations of the digestive tract are well done and much less technical than the above book, It had some good information on the various places you can feel intestinal pain and what they likely indicate. The information on IBD is brief, but a good overview for someone new to the disease or someone still trying to figure out what their problem or problems might be.
"The Complete Book of Better Digestion"
by Michael Oppenhiem, MD
Again, I am not quite sure why this book was on the list as it is a very general book on the digestive system, with only one small chapter on IBD, and not much detail. However, if you're looking for a primer on how the digestive system works, common problems, and which drugs and over-the-counter remedies work best, this is a good book. Curiously, he says under the section on the ileum that there are no major serious diseases of this part of the digestive tract! He also reports an interesting study where doctors tried to establish, by using endoscopy before and after, the effects on the stomach of a bland meal of meat and fries, a bland meal plus six aspirin or a spicy meal containing either Mexican peppers or a pepperoni pizza. Much to their surprise, although they found definite damage from the aspirins, there was no damage from the spicy food. Even when they ground up hot jalapeno peppers and sprayed it directly on the stomach lining, there was no damage.
This doctor has a very cynical approach to the medical system and I much enjoyed his "advice" Here are some of the best:
Helpful Hint: Never mind that physicians are fairly intelligent. When explaining your problem, assume that your doctor is rather dim. Use simple world like "pain", "itch", "sharp", "dull". Always describe your symptoms, but never give a diagnosis, even it it's something any idiot should know. Believe it or not, when a patient says that he had "the flu", I haven't the foggiest notion what that means.
Myth: Tasteless food is soothing , while tasty food is irritating.
Deep Dark Secret: Now and then your doctor hasn't the faintest idea of what your problem is. This happens more often than you'd guess. I prefer to stall. It takes a sophisticated doctor to procrastinate properly.
Another Deep Dark Secret: When a doctor sends you for a large series of "tests" one important purpose is to give him time to think. While you are having blood drawn, he may be poring though a medical book, phoning a specialist, or simply planning his next move if the tests are unrevealing, which they usually are.
Helpful Hint: If you want a doctor to take you seriously, insist that your symptoms occur at night. People sleep at night, diseases don't. Daytime symptoms are more likely to be stress-related.
Helpful Hint: Inaction is the best treatment for a host of medical problems. Patients (doctors, too, espeacially surgeons) should use it more often.
Helpful Hint: Cortisone makes everything feel better, but it doesn't cure anything.
Helpful Hint: The less you take of a drug, the fewer side effects it has.
Pearl of Wisdom: re the number of ulcers rising in women vs. men: Blaming a disease on stress is an ancient and honorable tradition, but it works best when we're ignorant. Notice what happens to that clever explanation when I add another statistic: Heart attacks have also declined for the past thirty years, but they're dropping equally fast in men and women.
Myth: If a treatment is painful or dangerous, it must be Powerful. Reading of the horrible ordeals patients in primitive tribes willingly endure, no one should feel superior. All humans believe this myth. On a superficial level, my patients are convinced that an injection works better than a pill.
A Deep, Dark Secret: Despite our years of training, doctors draw many conclusions by looking at a patient and thinking, Looks sick, or, Doesn't look sick. Furthermore, we're usually right. When a patient insists that he or she is sick, but I see someone who looks okay, I know I'm in for a difficult time.
An Oppenheim Rule: You can't prevent everything.
An Oppenheim Rule: Stress makes everything worse, but it doesn't cause anything. Relieving stress makes everything more tolerable, but it doesn't cure anything.
"Living With Chronic Illness; Days of Patience and Passion"
by Cheri Register.
I can't recommend this book highly enough, I just couldn't put it down, which is high praise for a non-fiction book. The author herself suffers from a recurring invisible chronic illness (in her case liver trouble) and interviewed thirty other people in the course of preparing to write the book, several of whom had IBD. She deals with all the issues we face in the course of our illness: body image; effects on children, spouse and family; fears; balancing dependence and independence; work decisions; dealing with doctors and hospitals; spiritual ways of coping, and much more.
One of the things I liked best was that she showed that different people often had very different ways of coping with the same problem or feeling, but made no value judgments as to the 'best' way. The book is sprinkled with quotes from people who have 'been there' and makes it clear that there is not just one way of coping, but that each person must find their own way. All the way through I kept running across familiar feelings and problems and new ways of looking at old problems.
Her discussion of the way society turns sufferer from chronic illness into heroic figures (the brave person bearing up under hardship) was eye opening. Her question 'What if we don't feel like being heroic? What if we want to complain and be angry about it?' Should we feel we've failed if we give in and express these feelings instead of suffering in silence? After all, were we given a choice about it? The only option besides "living with it" is suicide, a rather drastic solution. We can perhaps appreciate the 'character building' aspects of illness, but still wish it didn't happen!
My favourite quote from the book was "Things work out", something to keep in mind as you feel yourself starting to panic under stress!
"Eating Right for a Bad Gut,; The Complete Nutritional Guide to Ileitis,
Colitis and Crohn's Disease and IBD."
by Dr. James Scala.
This is the most useful and informative book on how to eat when you have IBD. As well as complete, up to date information on all aspects of nutrition, he also presents the findings of surveys from at least 100 people with IBD as to what they can and can't eat. as well as how to prepare foods so that they won't upset you. He makes the point that fibre will help with diarrhea, but it must be soluble fibre (such as that found in bananas and metamucil) and not insoluble fibre, such as that found in bran and raw vegetables. He suggests peeling all fruits and vegetables and cooking them to the mushy stage before eating them. You can retain your nutrition by using the cooking water in soups, etc. and he also suggests a good level of supplementation for all nutrients-at least 50% of RDAs. Included in the book are some useful lists on what foods are well tolerate (Do's), what ones are tolerated by some people if cooked well (Caution foods) and foods that seem to bother the majority of people with IBD (Don'ts). Included in the don't were: chocolate of any type, beets, beet juice, cabbage, fresh or cooked corn, blackberries, raspberries, nuts, unless ground into nut butters, all deep fried or very fatty foods.
As well as being generally bothered by foods high in fat or insoluble fibres, each person also can have food sensitivities to foods that are generally well tolerated. Dr. Scala recommends keeping a food diary of food eaten and symptoms and looking for patterns. Try removing different foods or food groups one at a time to see if symptoms lessen. He cautions not to accept you can't eat a food because of one bad reaction, always test at least three times to be sure. Dr. Scala is to be commended for attempting this type of study, as it is so difficult to establish scientifically with studies one diet that will work for everyone when each person's reactions are so varied, and also people's own tolerances very over time depending how active their disease is. I think all of us with IBD tend to get paranoiac about food and tend to blame what ever we ate just before a bad attack, and we need to bear in mind other factors such as stress, fatigue and changes in medication before blaming the food.
"Gastrointestinal Health - A Self Help Nutritional Program to Prevent Cure
or Alleviate IBS, Ulcers, Gas, and other Digestive Diseases"
by Dr. Steven Peikin
This book is not specific to IBD and covers a lot of information about the process of digestion and how it works as well as a how to figure out what part of the digestive system is giving you symptoms. Includes a prescribed diet with recipes that is low protein, low fat, high fibre and low in sugar and refined foods. This diet is claimed to correct many digestive disorders from IBS to acid problems to diverticulosis, but although it may improve IBD, he never claims a cure and suggests checking with your doctor to make sure you can tolerate the high fibre.
"Healing Your Body Naturally- Alternative Treatments to Illness"
by Gary Null
As indicated by the title, this is a book of alternative treatments to common medical problems-arthritis, cancer, heart disease, etc. Some of them sound very exciting and worth investigating if you suffer from these problems. It has a chapter on digestive diseases but doesn't deal with IBD specifically, and again, it's high fibre, vegetarian approach, though it's undoubtedly very good for most people, may not be tolerated by those with active disease. There is a distinct anti-medical bias with lots of stories of wrong medication and diagnosis by the medical establishment, but also lots of hopeful stories of "spontaneous remissions" tied to health food type cures.
"Living With It: Why You Don't Have to Be Healthy to Be Happy"
by Suzy Szasz
I loved the title of this book but was disappointed in the book itself. The author was diagnosed with Lupus at thirteen and is on megadoses of Prednisone (up to 160 mg/day!) from then on despite being given other immunosuppresants as well. She is a classic over-achiever, expecting herself to get straight A's right up to getting several masters degrees and a doctorate, and often carrying more than a normal course load, despite her disease. She takes a minimal amount of time off when her disease forces her to, but goes right back to work, sometimes even as she lies in bed. She, like many of us with chronic diseases, sees hospitalization as the ultimate defeat. I kept waiting for her to realize that she needed to slow down and take it easier, but she never does! I wonder how much of her hyperness is due to the prednisone, she seems totally unable to rest or relax. At the time she wrote the book she is 32 and has severe osteoporosis that causes ribs to crack and vertebrae to collapse if she moves too sharply. Her height has dropped from 4'10" to 4'7" and she has to wear a back brace, and has muscle weakness from the steroids. but she is still working as a research librarian and writing books in her spare time.
This is a somewhat scary book for those of us on long-term prednisone, a real warning of the price we may pay in the long term. However, her courage in facing her difficulties and pursuing her goals despite them, as well as her frank advice on selecting a doctor and dealing with the medical establishment, gives the book some value. Her father being a doctor and her own research bent, mean she is as knowledgeable if not more knowledgeable about lupus than her doctors, and takes a strong role in determining her own treatment. If nothing else, a close look at living with severe lupus makes IBD seem not so bad!
"Taking Charge: Overcoming the Challenges of Long-Term Illness"
by Irene Pollin and Susan K. Golant.
This book I did find useful. I often find that the medical establishment is very good at dealing with the physical side of disease, but do little to help you with the emotional and social aspects. This book is especially useful for the newly diagnosed with any chronic illness as it deals extremely well with the various emotions that occur as you come to grips with the diagnosis. It also deals with the fears that are involved (fear of dependency, fear of death, fear of abandonment, etc.) and other issues such as dealing with the handicapped stigma, isolation, telling others about your disease (should you or shouldn't you "come out" at work), etc. It also talks about different coping styles and how a mis-match between you and your relatives-one needing to talk about it, and one unable to-can cause difficulties in your relationships. I was glad to see that it was extremely supportive of support groups, recommending them many times as a way of coping emotionally and practically with the disease.
"Treating IBD: A Patient's Guide to the Medical and Surgical Management of
Inflammatory Bowel Disease"
by Lawrence J. Brandt and Penny Steiner-Grossman
This book was sponsored by the Crohn's & Colitis Foundation of America, and is a good overall reference book on all aspects of the diseases. If you are new to IBD and want more information on drugs, treatments, possible complications, types of surgery, etc. this book is an excellent source from the medical perspective. Reading a similar book as a newly diagnosed patient, I was somewhat aghast at the possible range of complications. Six years later, having met and survived many of them, I think it probably did help to know in advance what could happen and what the alternatives for handling the problems are.
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