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Need your advice

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  • Need your advice

    Hi everyone:
    it has been along time since i wrote anything,i had total cystectomy for a year now, i had revision for the stoma last July coz it was leaking, it failed eventually, now i am advised to correct the valve again by total revision of the procedure , i need some advise concering this matter, and some information about leakage, and if the rivision of the procedure 2 times can solve the problem?

  • #2
    A lot of your questions need to be answered by the surgeon who is going to do the surgery. I am wondering where your stoma is located and when they did the revision if they kept it in the same spot. I have always leaked from my stoma, more in the first year because my pouch was still being trained to hold more urine. I asked my surgeon about having it revised over the years and his answer has always been to keep things as they are. He said if you start messing with it the result sometimes end up worse then how things were originally! I have learned to accept the leaks and just am more diligent about watching for potential problems. When you talk about leaking how much? Is the urine pouring out or is the covering just getting very damp? You are keeping the stoma covered, right? What do you use? I either keep it covered with gauze and tape or I use AMPatches, plus I also put a nursing pad over that as extra insurance so my clothes are protected. I got my pouch in 1992 so after al these years I am used to living with it. were you told what the problem was when they did the revision and did they make it any differently when they revised it? I actually have IBS in my pouch which causes the pouch to spasm and then it leaks, not much can be done about it.