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(Kendall/Hunt Publishing, 1992) -available from CCFA.  ISBN 0-8403-7029-6  
(trade paperback). Can be purchased online at www.ccfa.org


"Managing Your Child's Crohn's Disease or Ulcerative Colitis", 
Keith Benkov, M.D. and Harland Winter (Mastermedia, 1996). 
Available from CCFA.  ISBN 1-57101-023-0 9 (hardcover).
Can be purchased online at www.ccfa.org

"The Angry Gut- Coping with Colitis & Crohn's Disease", W. Grant
Thompson, M.D. (Plenum, 1993).  ISBN 0-306-44470-4(hardcover).

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
   misleading as not much was covered as to "coping" with it.
   _________________________________________________________________


"Crohn's Disease & Ulcerative Colitis",  Dr. Fred Saibil, M.D, 
 (Firefly Books,1997). ISBN 1-55209-114-7 (paperback).

"Eating Right for a Bad Gut- The Complete Nutritional Guide to
Ileitis, Colitis, Crohn's Disease and Inflammatory Bowel Disease",
Dr. James Scala (Plume, 1992).  ISBN 0-452267668 (paperback).

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 paranoid 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.
   ________________________________________________________________
   
"Inflammatory Bowel Disease:  A Guide for Patients & Their Families", 
Stephen Hanauer, (Lippincott-Raven, 1997). ISBN 0397517718. (paperback).

 "The Complete Book of Better Digestion- A Gut-Level Guide to
  Gastric Relief", Michael Oppenheim, M.D. (Rodale, 1990).  ISBN 
  0-87857-869-2 (hardcover).


 This 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 I have quoted  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.
    ________________________________________________________________
   

"The IBD Nutrition Book", Jan K. Greenwood (John Wiley & Sons, 1992).  
ISBN 0-471-54630-5 (paperback).  Also available through the Crohn's & 
Colitis Foundation Of Canada at 1-800-387-1479.

"Inflammatory Bowel Disease:  A Clinical Approach", Henry D. Janowitz,
MD (Oxford Univ. Press, 1994)  ISBN: 0195078306 (hardcover).

"A Special Kind of Cookbook", Mary Sue Waisman (CCFC Calgary Chapter,
1989).

"Your Gut Feelings - A Complete Guide to Living with Intestinal 
Problems", Henry D. Janowitz, M.D. (Oxford University Press, 1994).
ISBN 0-19-5089136-7 (paperback).

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.


"Irritable Bowel Syndrome And Diverticulosis, A Self Help Plan", Shirley
Trickett (Thorsons Pub, 1992).  ISBN 0722524013 (paperback).

"The Wellness Book of I.B.S.:  How to Achieve Relief from IBS and Live a
Symptom-Free Life", Deralee Scanlon and Barbara Cottman Becnel (St.
Martin's Press, 1991).  ISBN 0312852266  (paperback).

"IBS:  A Doctor's Plan for Chronic Digestive Troubles:  The Definitive Guide 
to Prevention and Relief", Gerard L. Guillory, M.D. (Hartley & Marks,
1996).  ISBN  088179130X (paperback). 

"Irritable Bowel Syndrome:  A Natural Approach", Rosemary Nicol and William
Snape (Ulysses Press, 1995).   ISBN 1569750300 (paperback).

"7 Weeks to a Settled Stomach", Ronald L. Hoffman, 
M.D. (Simon and Schuster, 1990).  Includes lots of alternative medicine
therapies.  ISBN 0-671-68234-2 (hardcover, also available in paperback).

"Breaking the Vicious Cycle", Elaine Gottschall (The Kirkton Press,
R.R. #1, Kirkton, Ont., N0K 1K0, phone 519-229-6795, fax 519-229-6969
1994).  "The Gottschall Diet" -  an alternative dietary approach to the 
treatment of IBD, diverticulitis, and chronic diarrhea.  
ISBN 0-9692768-1-8(paperback).

"Gastrointestinal Health - A Self Help Nutritional Program to Prevent, 
Cure or Alleviate IBS, Ulcers, Gas, and other Digestive 
Diseases", Dr. Steven Peikin. (HarperPerenniel, 1992) 
 ISBN 006098405-8 (paperback).

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.
  _________________________________________________________________
   
   
"Indigestion- Living Better with Upper Intestinal Problems 
from Heartburn to Ulcers and Gallstones", Henry D. Janowitz, M.D.
 (Oxford University Press, 1994), ISBN 019508554X (paperback).

"Good Foods for Bad Stomachs", Henry D. Janowitz, M.D., 
(Oxford University Press, 1997), ISBN  0195087925 (hardcover).

"Gastroenterology for the House Officer", edited by David B.
Sachar, Jerome D. Waye, and Blair S. Lewis (William & Wilkins, 
1989).  Intended audience is doctors, but is relatively cheap
($20) as medical textbooks go.  ISBN 0-683-07488-1 (paperback).

"Healing Your Body Naturally- Alternative Treatments to Illness',
Gary Null (Seven Stories Press, 1997). 
 ISBN 1888363460 (paperback).   Includes a big chapter on 
digestive disorders.

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.
     _________________________________________________________________

         
"The Self-help Way to Treat Colitis and other IBS Conditions," De Lamar 
Gibbons, M.D.,(Keats Publishing, New Canaan, CT., 1992).  ISBN 0-87983-536-2 
(paperback).  This book, written by an M.D. that suffered from colitis, 
describes dietary approaches based on his personal experiences. 

"Ileostomy Handbook - Stoma Care and Management Techniques", Anita L. 
Price, C.E.T. (Certified Enterostomal Therapist), Charles C. Thomas 
Publisher, 2600 South First Street, Springfield, Illinois 62717.
ISBN 0-398-04931-9 (hardcover).

"The Ostomy Book:  Living Comfortably With Colostomies and Ileostomies,"
Barbara Dorr Mullen, Kerry Anne McGinn, (Bull Publishing, 1992). 
ISBN 0923521127 (paperback).

"Triumph Over Disease--By Fasting and Natural Diet", Jack Goldstein, (Arco 
Pub. Co., c1977). ISBN 0668041382 (hardcover.), ISBN 0668041404 (paperback). 
The author's experience with Ulcerative Colitis.

3.1  Are there other useful books out there about coping with chronic 
illness?

"After the Diagnosis: From Crisis to Spiritual Renewal for Patients with 
Chronic Illness", Joann LeMaistre (Ulysses Press, 1995).  ISBN 1569750467. 
(paperback).

"Alive and Kicking", Rolf Benirschke, (A K Productions, 1996).  ISBN  
 1885553404 (paperback).

"Beyond Rage:  Mastering Unavoidable Health Changes",  
JoAnn LeMaistre, Ph.D. (Alpine Guild, Oak Park IL, 
1993). Another good book on coping with chronic illness, written by a
psychologist who developed multiple sclerosis as an adult.
ISBN 0931712114 (hardcover).

"Colitis (The Experience of Illness)", Michael P. Kelly (Tavistock, 1992).
ISBN 0963387707 (paperback).

"Crohn's, Colitis, Hemorrhoids and Me", Kathlene J. O'Leary (Anderson
Press, 1995).  ISBN  0964757133  (paperback).

"Easy For You to Say:  Q&As for Teens Living With Chronic Illness", 
Miriam Kaufman, M.D. (Key Porter Books, 1995). 
ISBN  1550136194 (paperback).

"If This is a Test, Have I Passed Yet?", Ferne Sherkin-Langer, R.N., BScN
(MacMillan Canada).  ISBN 0-7715-9046-6.  

"Kitchen Table Wisdom:  Stories That Heal", Rachel Naomi Remen, M.D.
(Riverhead Books, 1996). ISBN 1573220426 (hardcover).

"Living with Chronic Illness: Days of Patience and Passion", Cheri 
Register. (The Free Press, hardcover).  A Bantam paperback edition of this 
book can be purchased from the author for $12 U.S. ($9.95 plus $2.05 
postage). Mail to:  Cheri Register, 4226 Washburn Ave, Minneapolis, MN 
55410-1521.  ISBN 055328438X.

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!
  _________________________________________________________________

 "Lupus- Living With It: You Don't Have to Be Healthy to Be Happy", Suzy Szasz.
(Prometheus Books, 700 East Amherst Street, Buffalo, NY 14215, 1995).
ISBN 1573920231 (paperback).  Author with lupus 
discusses living with chronic illness.

(The following is a review of the 1991 edition).
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!
  _________________________________________________________________
"Meeting the Challenge:  Living with Chronic Illness", Audrey Kron.
(Audrey Kron 1996).  ISBN 0963387715 (paperback). 

"Patient Power:  Overcoming Chronic Illness", J.M. Galbraith. (Benchmark 
Books, 1995)  ISBN 0942246020 (paperback).

"Sick and Tired of Feeling Sick and Tired...Living with Invisible Chronic 
Illness"- Paul J Donoghue Phd., and Mary E Siegel Phd. (W.W. Norton & 
Company. Inc., 1994). ISBN 0393311546 (paperback).

"Taking Charge:  Overcoming the Challenges of Long-Term Illness", Irene 
Pollin and Susan K. Golant. (Time Books, New York, 1994).  
ISBN 0812922581 (hardcover).  
"Taking Charge: How to Master the 8 Most Common Fears of Long-Term Illness", 
Irene Pollin and Susan K. Golant. (Time Books, New York, 1996).  
ISBN 0812927001 (paperback).  (later edition of first book?)

(Review is of first book listed)-
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.
  
"When Mommy is Sick", Ferne Sherkin-Langer, R.N.. (Concept Books, 1995).
Reading Level- Ages 4-8.  ISBN 0807588946. (hardcover). 


 _________________________________________________________________
   

3.2   What about general medicine books that people with these conditions 
might find useful?

"Prescription for Nutritional Healing-A Practical A-Z Reference to Drug-Free
Remedies Using Vitamins, Minerals, Herbs & Food Supplements", James F.
Balch, M.D. and Phyllis A. Balch, C.N.C. (Avery Publishing Group, 1996) 
ISBN 0895297272 (paperback).

"Alternative Medicine - The Definitive Guide", Compiled by The Burton 
Goldberg Group, (Future Medicine Publishing, Inc., Puyallup, Washington
1993).  Library of Congress Catalogue # 93-74059.  ISBN: 0-9636334-3-0.

"Healing with Whole Foods -Oriental Traditions and Modern Nutrition",
Paul Pitchford, (North Atlantic Books, Berkeley, California 1996).
ISBN 1556432208 (paperback).


Further suggestions are welcome in the format above.

---------------------------------------------------------------------------

COPYRIGHT NOTICE:

Copyright 1994, 1995, 1996, 1997 by Susan Blank.  Selected book reviews 
Copyright 1995 by Sheila Ruffell.  All rights reserved.

This document, or any derivative works thereof, may not be sold or
redistributed for profit in any way without express (not email) written
permission of the author.  This includes, but is not limited to,
translations into foreign languages, mass archival as on a CD_ROM and
inclusion in commercially published compilations (e.g. books). 

You are free to copy this document for personal use, or to make it available
for redistribution in its electronic format, provided that: 

(1) it remains wholly unedited and unmodified, 

(2) no fee or compensation is charged for copies of or access to this
    document, and

(3) this copyright notice and the following disclaimer remain attached. 

Disclaimer:
==========
This FAQ is provided by the author "as is", and any express or implied
warranties, including, but not limited to, the implied warranties of
merchantability and fitness for a particular purpose are disclaimed.  In
absolutely no event shall the author be liable for any direct, indirect,
incidental, special, exemplary, consequential or other form of damages 
(including, but not limited to, procurement of substitute goods or 
services; loss of use, data, or profits; or business interruption) 
however caused and on any theory of liability, whether in contract, 
strict liability, or tort (including negligence or otherwise) arising in 
any way out of the use or misuse of the information herein contained, 
even if advised of the possibility of such damage.  

In other words, this document is in no way intended to be a substitute
for medical care; the information contained herein is presented by the 
author purely for informational purposes only.  In no way are any of 
the materials presented here meant to be a substitute for professional 
medical care or attention by a qualified practitioner, nor should they 
be inferred as such.  ALWAYS check with your doctor if you have any 
questions or concerns about your condition, or before starting a new 
course of treatment or otherwise making any decisions about treatment. 

ACKNOWLEDGMENTS:  I would like to thank the many people who contributed 
information to this document, with special thanks to those who have 
selflessly volunteered many hours of work in setting up other 
repositories of information for the readers of 
alt.support.crohns-colitis (in alphabetical order):  Stuart Anderson, 
Michael Bloom, Chris Holmes, Bill Robertson and Laura Zurawski.
I would also like to thank the people who supported the original proposal 
to set up an IBD/IBS newsgroup, and Paul Neal, who came up with the idea 
in the first place.

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