Reply to "Am I really ready for J-pouch surgery?"

quote:
Have you thought about getting a new GI who will determine whether you have now developed Crohns? If you current doc can't confirm or deny, I'd see someone else. Just my opinion.


It is not so easy to confirm or deny as you seem to think. I changed pouch experts in 2010 strictly for insurance reasons and both new and old pouch experts have come to the same conclusion: Crohn's can be suspected but not confirmed. I have had 3 diagnostic tests as well as my routine scopes and they have all been inconclusive. The pattern of inflammation that exists in my ileum is inconclusive and may be due to a narrowing/segmental thickening of the ileum above my J Pouch that has caused "fecal stasis" or pooling of the feces above the J Pouch with resulting inflammation. Therefore, structural rather than systemic issues may be causing the inflammation being seen in my ileum, although they are puzzled by it because the structural theory does not fully explain what they are seeing.

It should also be noted that there was no inflammation seen in my ileum until 2008, meaning I had absolutely no symptoms or signs of Crohn's Disease for a full 16 years after getting my J Pouch.

I am of the opinion that my diagnosis is irrelevant, because we have been using some medications that are indicated for treatment of Crohn's, and in any event I have responded to the traditional treatment of pouchitis: antibiotics. Way too many people are caught up in the significance of a correct diagnosis as opposed to finding a proper treatment. If the treatment works the diagnosis is not important.
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