I have recently responded to two posts with a similar question about finding care for j-pouch, so I decided to make this topic a post of its own. My strategy for finding a good j-pouch Dr is below, which was my response to a similar post.
Please post your strategy for finding a good j-pouch Dr, and for the even harder problem of finding a good PCP for a j-pouch.
“I would first find the university/research hospitals that are driving distance up to 1,5 hr. I drive that much to see my surgeon and the GI. Then, I would look at the professors at the GI departments that see patients (not all do, some just do research), and mention IBD among their research/clinical interests. Then, I would look at their publications in Google scholar to see which ones published on IPAA, pouchitis, j-pouch, etc. If none has, which is likely, then I would pick the one who published most and also *most recently* on IBD in general. Ones who publish the most and most recently follow the recent literature closely, so they are the knowledgeable about the recent developments in this field.
These doctors call the regular doctors “community doctors”. From my experience, one needs a research Dr, not a community Dr with a j-pouch, because we are all part of a very large scale experiment. They are discovering a lot about us every year.”