I had a J pouch 11 years ago, I have had problems ever since butt burn, urgency, frequency, pressure in the abdomen, pain, tiredness and the consultant thought it was pouchitis (he did an endoscopy and could only find cuffitis). I have been on both Metronidazole and Ciprofloxacin since and this has helped, but not cured the problem. I now find out that the surgeon idenitified a hole in the anastomosis when he did the take down 11 years ago but still went ahead with it as it was discharging faecal matter into a cavity behind the pouch which contained it. I have had an EUA to clear the cavity but they cannot repair the hole. Over the years my CRP has been high (26 at the highest) and my HB low (currently 9.8). The antibiotics have kept infection at bay but not cured the problem. I'm led to believe that 11 years ago the practice was to do the take down irregardless of the leaky anastomosis, this doesn't seem right to me but I wondered if it was the truth? I would add that I did not know there was a hole until this year, no one deemed to tell me.

I had my surgery nearly 15 years ago and I don't think it was standard practice to go ahead with takedown with a known anastomotic leak then. However, if it was known that this became an established contained pocket that could freely drain into the pouch, it would not heal up and would eventually be considered part of your pouch, so doing the take-down would not have had an impact on the outcome. At this point, the solution is to open up the wall between the pocket and the pouch so that it does not retain fecal matter. It may or may not completely solve your problem. As to the cuffitis, the treatment is mesalamine or hydrocortisone suppositories, not antibiotics, so you probably need both the suppositories and antibiotics at this time.

I would see another surgeon for a second opinion, preferably someone with experience with pouch salvage from long term septic conditions. I have no clue why you were not told about the status of your pouch for over a decade.

Jan

Many thanks for your reply Jan, it is appreciated and it confirms what I thought. However at the time of the takedown and until my EUA in January 2010 the feacal matter was retained in the cavity and increased in size but it did not drain into the pouch. It has now been opened up into the pouch and it is settling down. Still a high frequency but I am coping. A new surgeon, who trained at the Cleveland Clinic, has now taken over so I'm in good hands.

I didn't mean to exclude responses from anyone else when I put for your advice and would appreciate knowing if anyone else has had a similar experience?

Shirley - you might want to post this in the general discussion forum because people often overlook this forum. You might get more responses.

kathy

Thank you Kathy - how do I move it into another forum though please?

I think the easiest way is just to start a new thread in the general discussion forum. You could also copy your question from this thread and paste it into the new thread in the other forum.

kathy