Hi Bill,
I just read your post and I am so sorry that you are not doing well with your k pouch and intubation.
There are a lot of possible reasons why things are not going well...probably more than one.
Firstly, why did you need a K pouch? Why not a J pouch? What led up to it?
Next, are you hernia-prone? Do you get them often?
Thirdly, when you leak, are you sitting, standing, laying down or squatting down?
Leaks happen for a lot of reasons:
1. Your pouch has partially or completely slipped off of the wall or is hanging sideways...What that does is pull on the valve, stretching it and popping it open...the fuller your pouch, the heavier it gets and the more it tugs on the valve...the way to manage it is to empty more often to avoid it getting to heavy...until you can get it fixed.
The hanging pouch can also cause the valve/canal to twist making it difficult to find the trajectory...or make it feel like you are hitting a 'wall' when you intubate...you need to gently twist the tube as you push it in to follow the new direction or use a smaller or more flexible tube.
A peristomal hernia or a hernia in the muscle around your stoma weakens the hold that the muscle has on your valve...leaving it weak and possibly incontinent.
The fix is obviously to fix the hernia but if your tissue is weak or fragile you may need a mesh repair...I had 6-8 hernais over a period of a few years...they came on suddenly...I had never had one before the age 47 and then suddenly they wouldn't stop...in the end, after a lot of pouch surgery, valve fixes and moving the pouch, I found a very sympathetic and incredibly cooperative surgery who specialized in laparoscopic surgery...he went in a few times and did mesh repairs...they saved me and my pouch.
One of the tests for continence is to lay in a full tub...if there are bubbles coming out of your stoma, you are not continent...Try turning sideways to see if there is a specific position where you lose continence.
As for tests to see what is going on inside of you...the best that I have found is an opacification...dripping 'Opac' into the pouch and taking Xrays...my radiologist (a friend of the very kind laparoscopic surgeon) was kind enough to listen to me...
I told him that I was only incontinent at certain times...so we started by 'dripping' the contrast solution into the valve and taking a few shots then filling the pouch and taking more with me on my back, then on each side, sitting up, standing up and then the same thing with the pouch half empty and totally empty...it gave us a real idea of what was going on in there...I do not live on my back or intubate while laying flat so why take the picture with me on my back...that was how we figured things out.
I do not have all of the solutions but I did have a lot of the problems...and was darn lucky to find good doctors who were willing to go the mile with me.
You need a good radiologist and surgeon who listens and calls you back if possible.
Sharon...
p.s...do not hesitate to PM me if you need to