HI Carolyne
I am so sorry that your k pouch is not cooperating and seems to be giving you constant trouble.
Not all leakage means valve slippage...there are 2 other causes that come to mind immediately and are not often considered...both may have an easier fix than a valve re-do which is a full blown surgery.
1. a peri-stomal hernia. That means that there is a weakness in the muscle that holds the valve in place so that it twists and pops open or gets strangled (very painful around the valve) or gets caught or shifts...it has happened to me 3 or 4 times. The first time we tried to fix it from the outside-in by cutting around the stoma and sewing it up but it didn't hold so Dr Cohen went in and did a full blown surgery and had to move me stoam (not and easy surgery at all)...the next 2 times it got fixed with laporoscopy where a hernia expert used mesh to surround the stoma and hold it in place...it has held tight since 2009.
People don't look for peristomal hernias becuase they are not common complications but they are worth mentionning...hard to diagnose too...common symptoms are valve prolapse, twists, a crooked valve or difficulty intubating.
2. Pouch falling totally or partially off of the wall. Happened to me after my initial pouch surgery before I made it out of the hospital (went flying out of a wheel chair when I was being taken out for a walk...hit a curb and it ripped the indwelling tube out and damaged me something silly).
When the pouch falls off of the wall you end up with it pulling down on the valve and popping it open, or the pouch hangs down on a angle or twists...all with the same consequence...the valve gets twisted or turned making intubation difficult and causing leakage. I just got mine put back on the wall at X-mas...it had been down for way over 2 years...the danger is leakage, severe pain, the pouch adhesing to other organs or crushing them from the weight when full plus many other fun complications...I had severe hip and back pain, bladder pain, difficulty emptying out my pouch, the tube getting stuck going in or out etc
That was an "easy" fix too...same hernia surgeon went in through laporoscopy and picked it up and affixed it to the wall...it really did not show on xrays as much as through a contrast study with me standing, laying on my side and back.
They tracked the movement of the pouch when full of the opac product.
I hope for you that it is one of these solutions and not another major surgery.
Sharon
ps..who was your surgeon?
