I've had my jpouch for 11 years. Multiple hospitalizations for numerous things. I've had two fluid collections outside pouch that were drained via ct-guided technique. I have had multiple bouts of pouchitis each year. Pancreatitis in 2009 with a month long hosptialization. On 1/2/15, I began bleeding, vomiting and SEVERE pelvic pressure and pain in jpouch area and upper abdominal distinction. I completed 10 days of flagyl/cipro, my usual treatment. Also, recommended I start low FodMap diet, I'm doing this now. Didn't get better. My GI wanted to "wait it out". Finally called back because so painful. He said he thought I might have fissure and also ordered CT. He touched base with the general surgeon and he recommended nitroglycerin paste for fissure. He called me within 30 minutes of CT and said I had severe ibd in pouch and going up into the distal bowel. We restarted flagyl/cipro. He also started on 40mg prednisone. This is a first for me since j pouch. Still in pain tapering the prednisone. Saw my local general surgeon on Friday. (He is the most skilled in my area, very trusted by my GI and did my gallbladder and very familiar with my case). He has me scheduled for a anal fissure repair this Thursday. He said there is no way med can treat this. He couldn't tell me much more, until he got in there and took a look. Has any one had this surgery, if so by a general surgeon. I know there are risk with any surgery but I don't want my pouch compromised. He is going to biopsy, for possible Crohn's. My GI told me last week he always wondered it this has been a component in my complications. Has anyone had success with colitis/crohns meds controlling symptoms. The surgeon said that the swelling/pressure is not related to fissure but would know more once he started. I feel like I have a softball where pouch is, hurts to sit, stand, and walk. Most comfortable position is semi reclined or on my side. Any advise is welcome. Thanks
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I'm a bit surprised by the plan. Most of what you describe doesn't sound like it's related to the fissure. In addition, fissures are miserable but generally not best treated surgically.
Plenty of people with Crohn's (if that's what you have) and J-pouches have reasonable success with medical treatments.
Perianal Crohn's looks different than disease cause by surgical complications or just acid stool burn. Sometimes surgery is the only solution. That said, I sure would want to give medical treatments a chance (including Botox injections) before opting for surgery, which is sphincterotomy. Botox is a chemical sphincterotomy with its effects wearing off after 3 months or so. With the surgical approach, incontinence is a very real risk, and we are more affected by sphincter weakness because of chronic loose stool. I'd want to consult with a colorectal surgeon first.
http://www.webmd.com/digestive...otomy-topic-overview
Jan 
Thank you very much. That is one of my biggest concerns.
I am not in as much pain actually passing stool. I just have an extremely full/pressure feeling at all times. I've delt with butt burn if I have ate the wrong things and it has been more difficult to pass stool at those times. Just frustrated, feels like more is going on but don't where to turn or what test to ask for.
I'd ask for a consult with a colorectal surgeon and an EUA (examination under anesthesia). Perhaps this is the "surgery" the general surgeon is talking about. But I would not want to give a blanket authorization for anything, sphincterotomy in particular.
Jan
This has got to feel like a never ending dilemma for you. I agree with Jan's advice - seek out a colorectal surgeon. I was cringing when I read about your local doctors. They probably are doing what they think is the best for you but you need specialists now. The thought of an exploratory surgery like this is scary.
I know how you are feeling with the pressure/full feelings too. I thought things with my 4 year old pouch were improving until around a month ago. I have been in excruciating pain so much so that I've been taking the maximum 4 pain pills a day of Norco, hydrocodone 10 MG. I've even taken 800 mg of ibuprofen too and I know we aren't to use NSAIDs. When it's that or going to ER I elected to take them. I would take that instead of the Norco because I brings more relief. I am using Canasa and Anucort suppositories and no change. Have you tired any suppositories or foams? I'm thinking the NSAID is better than prednisone but don't have your possible crohn's problem. Plus I wouldn't recommend anyone to take them unless desperate. I have also been using the Turbo Function on my bidet to stream water into my j-pouch. This has been the only thing that has worked for emptying my j-pouch and the pressure for a while. I'm not eating as well as I should be either. A lot of protein smoothies, homemade soups, and Greek yogurts plus ice cream a few nights. Food doesn't look appealing at all, especially meat. When my BM's present on their own they are thin ribbon like shaped with the consistency of peanut butter. I'm thinking that is either due to the inflammation of cuffitis and pouchitis or I've developed a stricture. Now I'm wondering about fissures. I started taking metamucil again Sunday. Thanks for this post topic.
I hope you find relief soon. Has either doctor prescribed anything to help with the pain? Narcotic pain medications have a constipating feature but I can't stand the pain. I'm finishing 2 weeks of Flagyl and next will go on Augmentin. Usually I'm feeling much better after a few days of starting the antibiotics and I feel worse. I can't take CIPRO as it caused c.diff in me before I had the surgeries.
I hope you find relief soon