@Karenchase posted:I have post-colectomy Crohn's, not chronic pouchitis. In some ways, it's semantics, since the treatment is the same, and I have suspected he said that partially to ensure I will continue to get insurance coverage for Entyvio. But for some reason, this really bothers me. Should I just go with it? It makes me uneasy, for a few different reasons. I value your opinions! Thanks
You have correctly answered your own question. It is semantics as the treatments are exactly the same, and if your treatment is working, you just keep rolling with it and don't worry about semantics.
I also fall into this category of chronic pouchitis vs. Crohn's post colectomy. I am taking Remicade and am told if it stops working, which it hasn't, then I will be on Entyvio myself. My doctors- all of them, including my ex GI who was Bo Shen's protege- told me the same thing as what you were told. I can also provide you with some mechanical reasons why doctors grapple with the diagnosis.
Traditional Crohn's disease is inflammation in the ileum above the colon. Post colectomy Crohn's/ chronic pouchitis is different. Because the colon not being present is a factor in development of some of the inflammation. In my case they had been peeking into my ileum post colectomy for 15 years and never saw anything. At the 15 year mark, they determined there was some irregular inflammation in the neoterminal ileum and my J Pouch inlet was strictured. There is a mechanical reason for why this inflammation in this area develops. It is due to backsplash stool- there is no backsplash valve in the J pouch as in the colon, so stool is continually back splashing back up into the ileum. This creates an inflammation pattern in the neoterminal ileum.
However, the inflammation in my neoterminal ileum was irregular enough that my doctors were uncertain whether all of it was due to backsplash stool, as opposed to the majority of it.
In the end though, it's inflammation and regardless of where it is and what you call it, it has to be treated.
For some odd reason there has been many "I have Crohn's and the Sky Is falling" type threads posted on this board through the years, that overlook these complexities in diagnosis as well as the fact that there is a bottom line - which is whether it's responsive to treatment or not regardless of what you label it. In your case I would really not worry about it, but if your inflammation pattern is like mine- which is extremely common in pouches that are 10-15 plus years old- keep an eye on scoping the inflammation every year and checking to see that the inlet doesn't get too strictured, which is the ultimate test on how well the treatment is working.