See my inline answers below
I had my j-pouch surgery 17.5 years ago ... regular 'pouchitis'. Did I always have Crohn's - but it was initially misdiagnosed? Or did my UC later develop into Crohn's? No idea...
Yes, chronic-pouchitis means you actually have a crohn's disease and not an UC. By definition,
UC is limited to the large intestine, your colectomy removed your large intestine. So, any crohnic inflammation you experience since is now within the scope of your small intestine. Crohn's disease is inflammation anywhere within the digestive tract, and often includes the small intestine.
Did you always have Crohn's Disease and not UC? Likely (or at least crohn's-colitis, which usually reveals itself to be an actual crohn's disease in histology after a while). Misdiagnosis is rare, but it can happen. We try our best to establish that a patient truly has UC before a J-pouch surgery, we can be 99% sure but never 100% sure, unfortunately.
We have another regular poster, Keith, who also has crohnic pouchitis after his j-pouch surgery. I believe it is now well managed using the Stelara inject-able biologic.
I am not sure what to do. Obviously I have learned to live with my condition and with lots of codeine daily. So, I am not sure if I want to try an intravenous drug that I honestly have little confidence in. Can anyone give me some 'patient advice' on this issue? Obviously, I could go see another GI but I am not sure he/she knows better than some patients who have tried Remicade themselves... Sometimes, the patient knows best.
I wouldn't rely on opiods like codeine as a solution to your symptoms. Opiods are addictive, and aren't treating the inflammation at all. Opiods just slow down the bowels.
I've had great luck with Remicade, the only medication to put my UC into a remission. I'd give it a try as it might just work for you. As a crohn's patient, you do have a variety of other biologics available to you as well including stelara, entyvio, and others. I know you will find your solution, but you will likely need biologics to manage it.
I'd strongly recommend seeing a gasteroenteroligist and get on the biologics asap.
Moderator Ulcerative Colitis
John, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasaSevere flares make the common toilet worse than any medieval torture imaginable. The rack? Bah! I survived the thousand razor blade poop for weeks!
Post Edited (iPoop) : 12/26/2017 9:04:49 AM (GMT-7)