First of all, WOW! What an awesome story!! This isn't just making lemonade of lemons, but champagne!

I need a little clarification. You say you had a subtotal colectomy, but have pouchitis. Do you have a j-pouch now, or did you mean you have proctitis (inflammation of the rectum)? Sort of makes a difference.

If you have your rectum now, a finding of dysplasia would not preclude a j-pouch. Many here had that scenario (though not many with a liver transplant due to PSC). Maybe if this is high grade dysplasia that is very low, near the anus, that might be a deal breaker.

My questions would revolve around the type of dysplasia, the location, how your transplant factors in to decision, and what are the risks that there might be undiscovered carcinoma. UCSF has a great team from what I hear, so you're good hands.

Jan

Thanks Jan you are awesome!

I think they call it pouchitus because my IBS moved up my small intestine. The biopsy site is at 25 cm but they did not sample everywhere.

These are great questions and thanks for reassuring me about the UCSF team. They did a great job with the liver transplant. I guess I will have to start looking for a racing suit that will accept a small swimming bag.

Peter

Was this your IBS or IBD? IBS is not an inflammatory disease (that is irritable bowel syndrome).

I am even more confused, if they are calling it pouchitis just because the inflammation moved into your small intestine. Wouldn't that just make it ileitis? To be pouchitis, you would need to have a pouch (reservoir).

The big question if this has moved into your small intestine, is whether this is Crohn's or UC. If there is a question of Crohn's, then that definitely will factor into whether a j-pouch is appropriate for you. Again, the docs at UCSF will be a good choice for sorting this out.

Jan

Thanks again Jan

You have given me some great background and I now I can ask some more informed questions..such as I was diagnosed with UC and had colon removed, then some disease comes back and moves up small intestine. Pathology does not show I have Crohns but I have something. What is it? UCSF will have lots of answers and recommendations.

Peter