Anyone had pouch excision and anus closure surgery ........ anyone?

Hello All

Having had a total colectomy in 2012 as an emergency, I opted to have IPAA (J-Pouch Formation) surgery in August 2013. I suffer from a genetic Primary Immune Disease calle CGD and the docs did say that healing was more difficult for patients with this and warned me against the surgery. I am at greater risks of infection too but I decided to give it a go as I was really keen to "restore intestinal continuity" as they call it.

Well, the surgery was very traumatic indeed. After 6 hours in recovery, with me constantly being given fluids and then my blood pressure dropping nonetheless, I had an event of some description and the crash team were called - basically I had suffered catastrophic blood loss and had to go back to theatre twice mor over the next 3 days. Following this, I recovered slowly with wound dehiscensce where the scar popped open again and I could see my abdominal wall. It took 6 months for it to heal with vac-pumping and in the end, Manuka Honey packing!

Just as I was about to complete and go in for the reconnection, a hole opened up in my side - I had developed a fistula. To cut a long story short, the one of the problems caused by the immune condition I have is colitis and acts in the same way as Chrons - and guess what? If you have Chrons they don't recommend J-Pouch surgery. They tell me it is better for people who have had UC!

Since then, after firther major surgery for adhesions and blockage, I have many fistulae and a defect causing collections of puss and fluid and recently had a serious peri-anal abscess which has now turned into several more fistulas. End result, I must have the pouch excised and the anus removed.

Has anyone had this procedure? It is pretty rare and for years they have told me they would only do it if ABSOLUTELY necessary as it's such a big and risky operation. I am especially curious about becoming a "Ken butt" (this made me laugh so hard when I discovered this term on here earlier - much needed humour in an othrwise worrying time) and what this involves - my surgeon said either its a muscle graft or some kind of buttock squeezing thing performed by a plastic surgeon??

Any thoughts welcome - can't find anyone here who has written about having their J-Pouch excised altogether....

Thanks very much

I don't have a J-pouch, but have severe Crohn's. I have been on infusions to minimize the growth of fistulae since 1999. I was on Remicade for 15 years but am allergic to it now. I am currently on Entyvio, and have fewer reactions to the skin. You've really been through the ringer. I've had my ostomy since 1992, and Crohn's since 1973. You can teach me about the J-pouch. Not sure I know much about that. Would love to hear back.