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Thread: SP stoma is still leaking...

  1. #1

    SP stoma is still leaking...

    Since last December, my bladder has been leaking around my stoma. I have changed medications from Ditropan 5-10-15mgs to Myrbetriq 50mg and now to Vesicare. When I changed to Myrbetriq, I went about 2 months without leaking, but started leaking leaking again it hasn't stopped since. I'm currently taking Vesicare 10 mg twice a day. I was taking it once a day but it didn't help, so my urologist bumped it up to twice a day... and its still leaking. Bladder infections have been ruled out as the cause and two cystoscopies revealed nothing out of the ordinary. I asked my doctor about botox but he said he didn't think it would help in my case, but has offered no other ideas on fixing the problem. I asked about bladder enlargement and he said it was an option but apparently I'd have to travel elsewhere to have it done.
    Are there any other options and if not, how well does bladder enlargement work, and are there many problems with this procedure? I've been doing bed-rest for about 19 months due to pressure sores, but they are healed now and the bladder problem is what I need to get solved before getting back in the chair again.
    My catheter drains well but I'm still leaking like a sieve. I need help...

  2. #2
    What kind of catheter are you using? Have you tried different catheter types/brands? Have you tried a larger size catheter? Have you tried the Duette catheter? (They offer generous free samples upon request) http://sci.rutgers.edu/forum/showthr...ghlight=Duette

  3. #3
    I have a regular bard silicone catheter. Size 22f. I asked my doctor about a larger size but he didn't want to go that way and he never responded to my message to him about using a Duette. Last I heard, their largest was 18f, so I'm not sure it would solve my problem but I'd gladly try.
    I just called but had to leave a message. Are they difficult to reach?

  4. #4
    Quote Originally Posted by Scott C4/5 View Post
    I have a regular bard silicone catheter. Size 22f. I asked my doctor about a larger size but he didn't want to go that way and he never responded to my message to him about using a Duette. Last I heard, their largest was 18f, so I'm not sure it would solve my problem but I'd gladly try.
    I just called but had to leave a message. Are they difficult to reach?
    Poiesis is hard to contact. Keep trying and send an email or two. Last thing I read is they were working on larger sizes.

    Sorry I don't have any other suggestions.

    All the best,
    GJ

  5. #5
    Senior Member ~Lin's Avatar
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    You can email as well, I spoke with them through email and they've been good about replying within 24 hours. They'll send the catheters directly to you if you request free samples. Then you can bring one with you in for a catheter change. I brought one in with me when I've had mine changed in the office.

    I wonder if its possible to tighten up the sp site surgically? Like maybe open things up further only to sew them back together tighter, and go down size in catheter... I don't know if thats at all possible though. Just musing, wondering if maybe laxity around your site is a problem. Especially with such a large catheter size.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  6. #6
    Quote Originally Posted by gjnl View Post
    Poiesis is hard to contact. Keep trying and send an email or two. Last thing I read is they were working on larger sizes.

    Sorry I don't have any other suggestions.

    All the best,
    GJ
    I got a hold of the woman who sends out samples. I hope to try one next week. Thanks. I'll post my results.

  7. #7
    Quote Originally Posted by ~Lin View Post
    You can email as well, I spoke with them through email and they've been good about replying within 24 hours. They'll send the catheters directly to you if you request free samples. Then you can bring one with you in for a catheter change. I brought one in with me when I've had mine changed in the office.

    I wonder if its possible to tighten up the sp site surgically? Like maybe open things up further only to sew them back together tighter, and go down size in catheter... I don't know if thats at all possible though. Just musing, wondering if maybe laxity around your site is a problem. Especially with such a large catheter size.
    I have a health nurse put mine in at home. I don't think there's a tightening surgery but hopefully it'll drain better and not worry about the size difference. They're supposed to come out with a 20fr sometime. Hopefully soon.

  8. #8
    Senior Member ~Lin's Avatar
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    It would be a type of repair if they could do anything surgically. This would be assuming its a problem in the first place, the site being loose and not tightening up on its own when you go down in catheter size. For something much simpler, think along the lines of people who stretch out their ears and then they won't close/shrink on their own and need to get them surgically tightened up. You open things up a bit more so you've got fresh tissue to heal back together. I don't know how that sort of thing would work on the bladder though!

    How did you end up with such a large catheter? Was it drainage problems? If so the duette should really help, with the second balloon preventing the eyes from being occluded by the bladder wall sucked in.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  9. #9
    Quote Originally Posted by ~Lin View Post
    It would be a type of repair if they could do anything surgically. This would be assuming its a problem in the first place, the site being loose and not tightening up on its own when you go down in catheter size. For something much simpler, think along the lines of people who stretch out their ears and then they won't close/shrink on their own and need to get them surgically tightened up. You open things up a bit more so you've got fresh tissue to heal back together. I don't know how that sort of thing would work on the bladder though!

    How did you end up with such a large catheter? Was it drainage problems? If so the duette should really help, with the second balloon preventing the eyes from being occluded by the bladder wall sucked in.
    I started off with a smaller cath (not sure of size) and there were problems with leaking and or drainage so we went bigger. I've had my SP since 1997 and for the majority of that time, I've had a 22fr size catheter.
    As for surgically tightening up the stoma, two different doctors said it can't be done. If this new catheter doesn't fix the problem, I'm gonna call my previous urologist who did my surgery and see what he thinks about the situation and whether bladder enlargement is my only other resort.

  10. #10
    If the duette does not help, I think that you have a good plan. Many surgeons are hesitant to touch someone else's surgery. They don't know the rationale behind what the original surgeon did, exactly what, if any problems occurred, etc. I understand their perspective but it can make it challenging for the patient when you have a problem.
    KCF

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