So, it seems like I have a mechanical problem with the pouch or something. The surgeon and GI said my belly is distended but from what, a dysfunctional pouch, adhesions? No wonder my system was shutting down. Having a pouch scope with surgeon. Then he will discuss with GI. They agree I can't keep going on like this. GI says she is seeing a lot of this stuff but didn't want to get into it. I am not unique. Ha Ha. You all know I am with NYP so hopefully in good hands. I guess at this point I need to have faith. I will update.
Replies sorted oldest to newest
Please let us know what problems are wrong when they scope you out. I've had tests done from outside the of the pouch too. Those tests come back saying my pouch is more inflamed than the inside of it looked during the scopes.
Mild to moderate pouchitis. The surgeon does not think this is causing the issues. Now wants GI to do a endoscope. Ugg, I'll be here for weeks at this rate. Maybe adhesions again? Same tests, every year, same problems, everything comes back normal. Ugg, hate this pouch! Hate my intestines, too many ab surgeries. Just don't know why system keeps shutting down. Surgeon said I was distended, GI said as well. So what's the damned problem already. And who needs pouchitis on top of everything.
ugh... adhesions can be difficult to find on tests if they are what are causing you the problems.
You're in good hands; I hope that they find the cause soon. Are you on the 14th floor? I was there this time last year for my take-down.
I bet it doesn't feel like mild-moderate pouchitis? Do you wonder what sever feels like? Can it get worse?
I hate endo scopes but they are better than drinking the barium for small intestine testing. (I don't understand how they can say everything looks fine on those. They do them with with only barium water in the system. Kind of hard to find where the problem is when you eat food which is thicker than water traveling through our intestines.)
Are you able to eat anything yet? Good Luck!
No not on 14. I'm on the cancer floor, only room in hospital.