Hi Courtney!
So sorry you are having some problems, and I hope things are better soon. In the meantime, let me see IF I can help explain a few things.
Since you have the j-pouch, it sounds like your entire colon and rectum were removed. J-pouches can be great, but problems can occur. Some people have LOTS of problems and then the problems stop. With me the problems kept coming back so I ultimately had a permanent ileostomy made around the age of 22. Had my j-pouch made at age 19. My problems were chronic pouchitis, and I was also getting abscesses and fissures. Usually I went into the hospital because the narrowing was so bad I could barely push anything out- which was extremely painful. I don't recall seeing any blood from my issues. I think one of my rectal abscesses was even caused by a fistula. No matter, it became clear to me this surgery would never work so I had the ileostomy done, and that's been wonderful.
"Technically", having the large bowel removed as you have had, is a cure for UC. I put that word in quotes because there are some people who get diagnosed with UC when in reality the disease is a form of Crohns, called Crohns Colitis. Remember that nobody knows what causes either UC or Crohns, and when Crohns occurs in the colon (called Crohns Colitis), it can look exactly like UC. That's what happened to me, and we figured that out when my disease resurfaced 25 years after surgery. However, if one of my rectal abscesses was caused by a fistula, then that would certainly raise the question of whether I really had UC to begin with because UC can not cause fistulas but Crohns can.
Figuring out what is causing the j-pouch problems is certainly important, and sometimes the problems will keep coming back and a permanent ileostomy is needed. That's not the end of the world by any means, in fact it's a new beginning. Chronic Pouchitis can be a reason to get rid of the j-pouch. If you do have Pouchitis and it keeps coming back, your doctor needs to be able to tell you at what point he will suggest giving up and going with the ileostomy. Ask your doctor about this. Some doctors will simply defer that decision to you, and personally I don't think that's right. Your input is extremely important but one cannot really make that decision without a doctor's input. Some if not many doctors, will not talk about the possibility of j-pouch failure so you should bring that up at some point yourself.
Nowadays, if you have a j-pouch and your diagnosis gets changed to Crohns disease, then that does NOT automatically mean your j-pouch gets removed and you'll need an ileostomy. But the odds are good though that at some point in your life the disease could flare up and cause j-pouch failure. However, the medication now can push back Crohns and keep it in remission for a long time. Hopefully if your diagnosis gets changed you get on meds, beat back the flare up and have a very long remission with a j-pouch.
But even without Crohns disease causing problems, lots of other problems are possible and I'm not very familiar with ALL of them. Sara Ringer on facebook and youtube (please search her name on both those sites) had many problems for years yet still has her j-pouch. Sara's diagnosis changed to Crohns from UC shortly after her surgery, but she still kept the pouch so don't get discouraged. Your situation is different and that's true for everyone. But something isn't right and a good surgeon and a a good GI should be able to figure out what's going on. Worst case scenario is the j-pouch is removed and you get a permanent ileostomy- which is not a bad thing. I've had over 20 years with this thing and have been able to have a very normal and full life.
Please keep us posted as to your progress!
