Pouchitis?

Hi, Jenny. The biopsies may not answer the Crohn’s question for sure (they usually don’t). The mouth sores particularly make me think of Crohn’s, though, but they also don’t prove it. The good news is that you don’t have to have a definitive diagnosis to find an effective treatment, though your patience may be tested during the search. If the prednisone (or the passage of time) gets you back to normal then you could easily resume the relative stability you’ve enjoyed for 15 years, diagnosis be damned. If that doesn’t do the job then it might be time to try one or more of the biologic medications. You’d likely need to stay on it, which is an adjustment from just treating pouchitis twice yearly. Good luck!

Hi Scott!
Thanks so much for your response and insight. Like you said, time will tell with all of this. I guess it’s going to be trial and error when it comes to the prednisone working or not working and if I need to add biologics.

The pouchitis vs. Crohn's thing is basically ancient history. Recent science thinks it's a new  disease process that causes inflammation in pouches and neoterminal  ileums post J pouch surgery. Your GI should know this if he/she is paying attention to recent studies by the top people in this field.  Whether pouch inflammation is labelled pouchitis, Crohn's or "new disease process" doesn't really matter as much as whether it can be treated. You might need to be on biologics although time will tell. But focus on the treatment and not the label as the labeling process is basically something nobody fully understands at this time. And anyone who claims to give you a definitive diagnosis except to say it's inflammation probably should not be trusted.