Hi all I had my j-pouch installed way back in 2009 and have not seen anyone regarding follow up since 2011 any advice should I leave alone or make enquiries as I think my surgeon has retired. Also anyone else have avauscular necrosis from steroids used as treatment for UC as I have just had my 4th hip replacement thanks to them!
People differ on how often a pouch should be scoped if it’s causing no trouble. The remaining rectal cuff does have some risk of developing dysplasia or rectal cancer, so some sort of screening probably is warranted. A pouchoscopy is quite easy assuming 1) the prep isn’t overdone, as if for a full flexible sigmoidoscopy, and 2) you skip the sedation. Even with that I go several years between pouchoscopies, and that’s with antibiotic-dependent pouchitis. And this is even though my endoscopy center is 5 minutes from my house. Other folks have their pouchoscopies done every year like clockwork.
Perhaps as important as the screening is to have a gastroenterologist that knows you. Even in Wales (where you appear to be), getting started with a new doctor after you get sick is just miserable. There aren’t many perfectly healthy J-pouchers on this forum (they’re busy doing other normal things), but perhaps someone from the UK can describe NHS “routine care” for J-pouches, and how to get connected to a gastroenterologist when it’s not an emergency.
