@Doug K posted:I hope that I just have pouchitis and not Crohn’s in the pouch.
There is not really much difference if it becomes chronic. If you have inflammation it has to be treated and you either respond to the treatment or not. I would MUCH rather have treatable Crohn's Disease than untreatable pouchitis. As someone who has been dealing with these issues for 30 years, I can tell you that getting caught up in labels or accurate diagnoses of the particular kind of inflammation is a waste of time, because all the treatments are the same regardless of what label is used, and the patient either responds or does not. A much more pertinent concern is not responding to treatment and/or being sickened with side effects by the treatment.
The best long term initial strategy for combatting pouchitis is to lower carbs and sugars and ROTATE antibiotics so that no one antibiotic loses efficacy. I did this for 25 years before the inflammation gradually became less well controlled, and then started the "second line" of treatment, which is biologics and specifically Remicade. This has held things in check for the most part, except at the J Pouch inlet which is a problem area for long term pouches due to backsplash stool and small intestine bacterial overgrowth aka SIBO. The reason to lower carbs and sugars in one's diet is they tend to feed SIBO.
I hold a Crohn's diagnosis technically after dealing with pouchitis for 25 years, but as I mentioned earlier, worrying about diagnosis as opposed to treatment is a losing endeavor.
If your pouchitis does not clear up after one treatment and becomes chronic, refractory or antibiotics dependent, you will need to get scoped annually. Apart from keeping an eye on the rectal cuff which is colonic tissue that will automatically be biopsied, scoping will determine the progress of treatment, the pattern of inflammation, and will assist in future treatment determinations.
As other have mentioned above Xifaxin is an excellent antibiotic for those who are sensitive to antibiotics, because it is not systemically absorbed and stays in the gut. It was always part of my antibiotic rotation for many years.
Good luck.