Sorry you're experiencing this. I got my Indiana Pouch about a year ago. The leaking was more frequent in the first 6 months. Now, it usually only happens for me when I wait too long to "go." Sometimes it also happens if I don't drink enough fluids, which produces too much mucus and then I leak that a little. Weird, I know. Have you noticed a pattern to the leaking or does it just happen randomly? My doctor was very experienced in IP surgery and said he reinforced the valve so that I shouldn't leak. So from the info you provided it's hard to know if your issue is from waiting too long between bathroom breaks or an issue with the surgery. My understanding is that you can have revision surgery if it is the latter.
A catheter manufacturer site says as follows on incontinency after Indiana pouch surgery.
Incontinence: urine leakage occurs more frequently during the first few months as the pouch is still learning to hold urine. But it can also occur if the ileocecal valve is not totally continent, or if the pouch goes too long without catheterization.
Last edit: 3 months 1 week ago by joea73. Reason: typo
I am sorry no one has responded with some ideas. Myself, I have not had a cystectomy so while I am not a lot of help, I wanted you to know it is being seen.
As far as any advice, I would call the URO's office and talk to the charge nurse. Sometimes they have more time and actual experience on items like this. Some medium and larger towns have bladder cancer support groups to reach out to, maybe even a stoma society.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I had surgery for muscle-invasive bladder cancer in April. The stoma is constantly seeping to the point of wetting clothes, so I must wear a bandage or Poise pad (repositioned, of course) all the time. My surgeon is not helpful. Any information?