I'd start by finding a good gastroenterologist (knowledgable about J-pouches). If you have a primary care doctor he/she could help you find a GI doctor. It's best to defer seeing a new surgeon until you need a surgical evaluation, IMO.

I agree with Scott.  I'm big on medical schools.  I find in my son's case, they have a better knowledge base.  But they need to have a strong GI program.  Also, check who is on network with your insurance!

 

So, maybe my question should be, then, any recommendations for gastroenterologists in Topeka or even Kansas City? I saw a GI about 15 mos. ago and he seemed relatively unfamiliar with J-pouches. Didn't want to even examine me. Now that things are getting more challenging, I want to make a contact before I am faced with a major crisis, but I want someone that knows what he/she is doing.

When I lived in Kansas City my gastroenterologist was Gregory Barber. I owe him a great deal. After several surgeons had turned me down for a J-pouch, and I'd kind of given up, he encouraged me to explore further, and I'm *very* glad I did. I left Kansas City shortly thereafter, so I don't have much direct experience with his skills at J-pouch care (e.g. pouchoscopy), I'd trust him to be honest about it. Heck, my current GI has learned along with me, and could be trusted to do so.

This is my first post although I have been reading and commiserating for over a year. When  you asked about a central KS physician, I felt I needed to reply. My surgeon, Michael Porter, in Wichita was able to help with recurring stenosis of my cuff. In an outpatient dilation procedure, he was able to increase the outflow from "silly string" to a more normal stool. (Sorry about that visual). Anyway, I am 10 years out with no problems except the stenosis and a few bouts of pouchitis. Perhaps he can help.

Thank you for the responses and suggestions.