Indiana Pouch w/Stomal Stenosis

[wildemom]

Has anyone on here had experience with their Indiana Pouch/Stoma becoming impossible to catheterize? Mine has stenosed and I am unable to have anymore surgery (as it could be life threatening). The solution was a permanent SP tube (which now is leaking). So, I am using Hollister bags and wafers with the sp tube threaded into them. I have a 26 french sp tube that I irrigate 3 times per day. The area around the tube just keeps getting larger and "sucks air in". They do not have any tubes larger than what I am wearing. Now the leakage is so bad the wafers do not even stick. They are only lasting maybe a day if I am lucky. I used to have really good seal and they would last 3-4 days. That area is so big now and so very irritated from urine. We are talking profuse leaking (as much as what comes out of the catheter. I stand up and urine just gushes out. I am in desperate need of some advice.

We have tried everything. I've worn out the catalogues of products and can not have surgery. Has anyone else had their Indiana Pouch fail? How was it repaired? If not what did you do? Any tips for this kind of leakage?

I am taking a real risk posting on here. Really if you have an SP tube or an Indiana pouch or use wafers/bags I am open to anything. I do not leave my house (only to church and close friends houses maybe a movie once in a while cause it is dark and I can leave). I am open to any help you cold offer short of telling me this is my fault like someone else did. I just want to have some quality of life back.

[squid56]

When I was having trouble getting a catheter in my stoma my surgeon had me put in a foley and leave it in there for extended periods of time to help keep it from stenosing. It worked, there are times when I still have some difficulties cathing but after 22 years I know all the tricks to finally get the thing in. Sorry you are going through this.

[wildemom]

Thanks for your response. We did the foley thing and the hernia w as blocking that too. We even left it in for quite some time.