Day 1 - Learning

You've just been diagnosed with IBS. Now what?

Day 1 Task List

1. Verify that your IBS diagnosis is accurate
2. Do your symptoms match the criteria?
3. Have you had all the necessary medical tests?
4. Learn the physical pathology behind your symptoms

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 likely are 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.[2] I was diagnosed with IBS 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 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 50. 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).[3] 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.[4]

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.[5] 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.

Click here to continue reading First Year: IBS.

[2] 87% of U.S. doctors admit that physicians need better education about IBS. (Citation from the largest, most comprehensive national survey ever conducted on IBS, July/August 1999, by Schulman, Ronca and Bucuvalas, Inc., funded by Glaxo Wellcome.)

[3] Rome II Diagnostic Criteria for Irritable Bowel Syndrome: Gut 1999; volume 45 (Supplement II).

[4] The excess prostagladins associated with uterine cramps can also trigger gastrointestinal spasms, with resulting pain and diarrhea

[5] A UCLA survey of approximately 3,000 respondents illuminated how IBS had a strong negative effect on patients' quality of life:

40% reported intolerable abdominal pain

65% plan their day-to-day schedule based on the anticipated use of bathroom facilities

53% of patients with IBS declared that their health limited their activity whereas only 26% of individuals without IBS felt the same way.

In contrast, the majority of doctors interviewed about IBS under appreciated the seriousness of the condition, and 33% mistakenly believed that IBS was primarily a psychological problem.

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