Indiana Pouch With Permanent Supra-pubic Catheter

[wildemom]

Does anyone else here have experience with a SP tube in their Indiana Pouch?
I have had my pouch since 1999 and the 26 fr SP tube for the last year.

This SP tube is a nightmare. It constantly hurts and I am leaking profusely (since June).
I have no infection, blockage, and changing the catheter does not help.
My question is does anyone have suggestions for controlling the leakage?

[squid56]

Hi Wildemom, I am curious as to why you have an SP tube if you have an Indiana Pouch. I have had my pouch since 1992 and in the beginning there were times when my uro would have me wear an indwelling foley catheter in my stoma for various reasons, but never as a long term solution. I hate SP tubes, yes they hurt and it is not unusual to have issues with leakage around the tube. I had my bladder taken out due to Interstital Cystitis so I know my body is less tolerant of things due to the disease. I hope someone that is ine the same situation comes along to answer. I did not want you to feel like no one was paying attention. Judith

[wildemom]

I have had my pouch since 1999 & I had many complications. 3 fistulas and 3 hernias which led to abdominal reconstruction with Mesh placement.
After the mesh was put in I developed a hernia near the stoma that was drawing up into the mesh and caused "stomal stenosis". I was also diagnosed
with Celiac and Marfan's syndrome after having my pouch. Had we known at the time of surgery I probably would have gone with something else (as both
of those are connective tissue disorders and have contributed to my complications)

Needless to say, I had to have a way to drain and since I can have no more surgery unless it is to save my life, we went the SP route. My SP is not in the
typical location. It is off to the right and is just a stab wound into the pouch (kind of like when you wake up from the pouch surgery).

The problem is since there is nothing to support this catheter but abdominal wall the entrance wound keeps growing. I have a 26 fr right now
and am leaking profusely. We do not want to go up in size as this problem will just continue. Just trying to find out if anyone has had
difficulty with a leaking sp tube. If so, what are you using to contain the leakage.

I am having some success with an absorbent foam & in 2 weeks We are going to try using a flange from a g-tube to use the balloon to
stop the leakage.

[wildemom]

Oh! I had my bladder removed due to IC as well.