First Year--IBS (Irritable Bowel Syndrome): An Essential Guide for the Newly Diagnosed

Chapter One

DAY 1 learning

task list

1. Verify that your IBS diagnosis is accurate.

• Do your symptoms match the criteria?

• Have you had all the necessary medical tests?

2. Learn the physical pathology behind your symptoms.

You've Just Been
Diagnosed with IBS.
Now What?

Well, first of all, take a deep breath and try to relax. IBS is definitely not the end of the world. Make yourself a nice hot cup of peppermint or chamomile tea (both terrific GI muscle relaxants, and mint is packed with a pain-reliever as well), and take a small measure of comfort in finally knowing what's wrong with you. Odds are you've been wondering what the problem was for quite a while. The (only) great thing about IBS is that it is not associated with, nor does it lead to, any other illness. It will not progress, it does not raise your risk of colon cancer, it never requires surgery, and it is not a genetic disorder you can pass on to your children. Since IBS can be a god-awful problem in its own right, it's nice to know that at least you don't have anything else to worry about in the future. Once you learn how to control your symptoms, you've effectively solved the problem.

    Second, take another deep breath, because you might not have been properly diagnosed after all. Unfortunately, there are a great number of much more serious GI tract problems that can mimic IBS, and manypatients are given an IBS diagnosis before they have had all (or even any) of the tests required to eliminate other disorders. Before you accept a diagnosis of IBS, make sure that you have had the following problems conclusively ruled out:

colon cancer
inflammatory bowel diseases (Crohn's and ulcerative colitis)
bowel obstructions
diverticulosis
gallstones
food allergies
celiac (a genetic, autoimmune disorder resulting in gluten intolerance)
bacterial infections
intestinal parasites
endometriosis
ovarian cancer

    What diagnostic tests does IBS require? Quite a few, and they're unpleasant but truly necessary. All possible physical, structural, and infectious abnormalities of the GI tract need to be unquestionably ruled out before you agree to an IBS diagnosis. This requires a physical examination, preferably by a board-certified gastroenterologist, and the following studies: complete blood count, sedimentation rate, and chemistries; stool for ova, parasites, and blood; urinalysis; liver function tests; rectal exam; abdominal x-rays; colonoscopy; for women, a gynecological exam including CA-125 blood test for ovarian cancer. Other diagnostic studies should be minimal and will depend on the symptom subtype. For example, patients with diarrhea-predominant symptoms should have a small bowel radiograph or lactose/dextrose H2 breath test. For patients with pain as the predominant symptom, a plain abdominal radiograph during an acute episode to exclude bowel obstruction and other abdominal pathology should be conducted. For patients with indigestion, nausea, and bloating, an abdominal ultrasound can rule out gallstones. For patients with any numbness in association with constipation, Multiple Sclerosis should be excluded.

FOR CHILDREN WITH IBS

Children with IBS symptoms require fewer diagnostic tests than adults. Colon and ovarian cancers are not typical suspects, diverticulosis and gallstones are quite rare in childhood, and endometriosis does not occur in pre-pubescents. The remaining possible illnesses that can mimic IBS—particularly Crohn's, ulcerative colitis, and celiac—do need to be ruled out. It's worth noting that there is no doubt whatsoever that children can develop IBS, and there is no minimum age requirement for this disorder. I suffered my first attack at age nine; other children have been diagnosed as young as age three.

Had Your Gallbladder Out?

IF YOUR IBS symptoms are diarrhea-predominant, and began after you had your gallbladder or ileum (the last portion of the small intestine) removed, you are likely suffering from a malabsorption of bile acids secreted by the liver. These acids, which are normally stored in the gallbladder, are instead being dumped directly into the small intestines, causing chronic irritation and diarrhea. The prescription drug Questran (cholestyramine), which binds the bile acids in the intestines and prevents them from reaching the colon, can help this problem and should cure your "IBS." The bad news is you'll probably have to take Questran for the rest of your life. The good news is you don't need this book.

    If you know you haven't had the proper tests for an IBS diagnosis, insist on them. If you're not sure whether or not you've had them, take this book into your doctor's office, have your chart pulled, and compare. If your doctor tells you all of these tests are unnecessary, say goodbye and find a new doctor. I was diagnosed with IBS at the age of sixteen, ten years before I was actually given any of the tests necessary for a proper diagnosis. Had I actually had, say, a bowel obstruction instead of IBS, I could have died. Don't be as foolish as I was and accept a diagnosis without getting the tests to back it up. Your health and your life are on the line.

"I would have developed colon cancer and needed a
colostomy, but my doctor told me I just had IBS."

—Ann G., Evansville, Indiana, age 53, misdiagnosed with IBS.

"A few months ago I started feeling like I had hemorrhoids every day. My General Practitioner diagnosed me with IBS without running any tests, and prescribed medication. The pills did me little good and I was still miserable. One Sunday after a particularly uncomfortable day, I searched the Internet for information about IBS and found www.eatingforibs. com. I wrote the author of the site and told her my story, and she was very concerned when she learned that my symptoms began after age fifty. She urged me to have a colonoscopy. When I asked my GP about this he did not think my symptoms, or IBS in general, warranted it.

I made an appointment with another doctor to get a second opinion. He agreed I should have a colonoscopy, and thank goodness for this! During the colonoscopy the doctor found and removed a large benign polyp, which was quite extensive and would have become cancerous. I would have ended up with a colostomy. The doctor wants me to have a flexible sigmoidoscopy in six months to make sure there are no new growths. I am so thankful I took matters into my own hands and searched for information about IBS. I'm also very glad I didn't listen to my first doctor and that I insisted on having the tests necessary for an accurate diagnosis. My symptoms have improved dramatically since the polyp was removed, and now I don't think I ever even had IBS in the first place."

    Just as you should insist on the necessary tests for a diagnosis, you should also consider yourself misdiagnosed if your symptoms do not fit the standard for IBS. This is defined as continuous or recurrent lower abdominal pain or cramping (from mild to excruciating) in association with altered bowel motility (diarrhea, constipation, or both). Attacks may strike suddenly at any time of day or night, and may even occasionally (though not typically) wake you from a sound sleep. Gas and bloating are common, but vomiting isn't (though it can occur due to nausea from the pain). Upper GI symptoms are not a part of the syndrome. For women, attacks are often associated with their menstrual periods, particularly if they are prone to menstrual cramps.

    It's important to note that it is the combination of symptoms that characterizes IBS—constipation as a stand-alone problem should not be diagnosed as IBS, nor should abdominal pain that comes without a change in bowel movements. Passing blood, running a fever, swollen extremities, and joint pain are not symptoms of IBS, and point to more serious disorders.

Serious? My problem is serious! How dare anyone suggest otherwise?

    As infuriating as it is, and despite the fact that IBS is a very serious problem to people who suffer from it, it really isn't treated as such by many doctors, medical researchers, and the general public. You may even have friends and family dismiss your problem as "all in your head." It's up to you to educate these people, and then dump them if they persist in their ignorance at the expense of your health. You deserve support, concern, and consideration for your problem. IBS may not be "serious" in that it will not kill you, but an attack can be so painful you wish you'd die just to end it. And that's pretty damn serious.

(Continues...)

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Excerpted from THE FIRST YEAR - IBS (Irritable Bowel Syndrome) by Heather Van Vorous. Copyright © 2001 by Heather Van Vorous. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

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