Tuesday, September 4, 2007

Lesser Known GI Disturbances

I spent the weekend talking to a mom whose daughter was having GI problems. I wanted to compare notes to see if there were any similarities between what her daughter and my son have been experiencing. It turns out the daughter's symptoms were quite different from Andy's. She was having severe abdominal pain and nothing else. Her mom did tell me that she heard of a condition called the Habba Syndrome where excessive bile was being dumped into the small intestine which would cause constant diarrhea. The treatment was to go on anti-cholesterol medication that would bind the bile and stop the D. This condition was named after Dr. Habba and there could possibly be millions of people who think they have IBS when in fact they have this particular problem.

What are the cardinal symptoms of this syndrome?
  1. Post-prandial diarrhea (varying from simple urgency to incontinence) and fear of eating to avoid diarrhea
  2. Dysfunctional gallbladder as determined by radiological testing
  3. Failure to respond to standard therapy of IBS or spastic colon
  4. Favorable response to bile acid binding agents

It is possible that my son could have this.

The other condition I have found is called collagenous microscopic colitis. Normally when one says colitis, it usually means ulcerative colitis or infectious colitis which often times involves visible inflammation of the colon and bleeding. It still is a possibility that my son has UC although so far all the tests have been negative. The interesting thing about the microscopic colitis which is supposedly rare although they are now thinking that perhaps 10-20% of people with chronic D may have this, is that even with a colonoscopy, the colon will look normal. The intestinal wall has to actually be biopsied for confirmation of inflammation and not only one side but both sides as it could be more prevalent on one side. Also people with this inflammatory bowel disease will have weight loss, severe intolerances to many foods especially dairy and gluten. Although gluten tests will many times come back negative. They have diarrhea several times a day and they cannot tolerate fat. Onset of symptoms can be sudden. One lady that I read about said that she thought it might have been the mercury in her fillings that set it off. She had dental work done and then had symptoms shortly afterwards. When my son had vaccinations, he had severe symptoms within two days. The meningococcal vaccine has thimerosal in it, a mercury derivative and I was highly suspicious at the time that it might have been a trigger to my son's problems. Doctors think that the colitis could be autoimmune in nature. Treatment is usually steroids ie, Entocort, Prednisone which will control the D. Changes to a low-fat, dairy free, gluten free diet can help tremendously. My son's symptoms and onset of his problems fit rather closely to this particular colitis. So Bette Jo, you may be right!

My GI doctors, nurse practitioner never mentioned any of these conditions as a possibility. I am finding that one has to be extremely proactive and become their own detective in order to get any kind of answers. The medical profession is not going to do it, that is for sure!


BetteJo said...

Unfortunately IBS seems to be a catch-all and sometimes seems to mean that the doctors just don't know what else it could be.

You seem to be the best detective and obviously your sons best advocate and I know you'll keep pushing until you find the answer.

If I'm right about something, the only joy I would take in it would be if it would lead to a treatment. Both you AND Andy are suffering, and there is never anything wrong with another doctor, another opinion, and an educated patient. Or in this case, an educated Mom!

You're doing great!

palette48 said...

Thanks bette jo,

Yes the term IBS is almost meaningless because as you said it is just a catch-all for everything that they can't figure out. I did get the name of a good GI doctor from this mom that I talked so I may have to give him a call.