When I got my pouch most of my doctors thought I had Crohn's colitis. Several surgeons turned me away, but I found a great surgeon to perform the procedure. That was fourteen years ago, and I'm happy with the results. I knew it might fail, but I was just hoping for a few good years. It's been much better than that.

Pouches fail more often with Crohn's than UC. Pouch failure can be miserable for a long time, as we delay giving up and moving on. No one can guarantee you (or someone with UC, for that matter) a lifetime of J-pouch success. It's a gamble.

Are you certain it's Crohn's? Has it ever struck outside the colon? Do you have any perianal effects? Have you talked to a surgeon yet?

Good luck, however it goes!

Definetely crohns colitis; very deep ulcers and other things which indicate crohns but just in large intestine.  I will speak to my surgeon here in Ireland in a few weeks but I plan on consulting with Cleveland clinic with the view of hopefully getting it done.  So glad to hear you have done well with j pouch although you are not sure you have crohns.  I am not sure what you mean by perianal but I never had a fistula but I do have inflammation in the remaining rectum.  

Perianal just means in and around the anus. If the exit isn't healthy the pouch won't make you happy. The rectum can be cut pretty short ( or removed completely in a hand-sewn procedure).

Thanks so much, I think my exit is ok!  no major problems as far as a know.  I expect my surgeon to not recommend j pouch due to having crohns but I will probably get a consultation with Cleveland clinic as it has such a good reputation.  I think the procedure is to remove rectum in any case.  Wondering if anyone else has had this done (j pouch) and have crohns colitis.  

Hi Hazel

I have had my JPouch since January 2000. My diagnosis at that time was UC, without any doubt. I had 14 great years, a true JPouch success story. About 3 yrs ago, I developed a flare, started A biologic and antibiotics. While I feel fine, the Pouch is terribly inflamed and ulcerated. I took a trip to Cleveland Clinic for advice,  which was a wonderful experience by the way. I met with a surgeon, who changed my diagnosis to Chrons. My ulcers and inflammation are only in the Pouch as well. CC does preform JPouch surgeries and redos on Chrons patients so long as it is in only the colon or Pouch.  However, they believe you need to remain on medication to treat the disease for best chance of success with the Pouch. I highly suggest you go visit them and get their advice too. 

Thank you, I hate all the drugs for Crohns so maybe this wont be an option for me.  Although I do plan on staying on scd diet and low dose naltrexone so maybe that might be enough.    A bit apprehensive now I must say, would hate to go back to being sick again

Hazel, I really recommend that you relax your objections to medications. I'm not suggesting you ignore serious side effects *that actually occur*, but you are likely to need medication to thrive. Doing everything you can with diet is perfectly reasonable, but assuming it will be sufficient is less reasonable. This applies whether or not you have a J-pouch: being willing to do all that's necessary to get well and stay well is often the only way to have any chance at all of being well. Asking a surgeon to construct a J-pouch in your circumstances requires that you be willing to do what's necessary to care for it. 

I have been on most medications and do not do well with them; steroids just kill me, I felt quite unwell on biologics, and even on the low grade drug asacol I had a very bad allergic reaction on the high dose of it which is how I ended up in hospital and eventually having surgery.  So I really am not relaxed about meds at all.  

I have a contact who has a son with UC who takes cannaboids to control his UC and is off all meds; wondering if that would be an option instead of thinking I need to take the other meds.