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Thread: SP stoma is still leaking...

  1. #21
    Senior Member ~Lin's Avatar
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    Definitely sounds like a spasm issue, when you're producing more urine it's triggering spasms. Have you exhausted all options med wise yet? What about discussing botox with your urologist? Maybe the answer is the combination of botox and duette. Also maybe a new cytoscopy to make sure your urethra is OK? I would assume if there was any damage to the sphincters you would have had urethral leaking already. But it is possible they're not working well but the stoma was still the path of least resistance prior to the duette. Can you wear a condom cath while figuring things out? Don't want to cause skin breakdown. I'm sure it will be a pain in the ass though to have both the bag for the sp and one for the condom cath.
    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.

  2. #22
    Quote Originally Posted by SCI-Nurse View Post
    are you on anticholinergic medication for the bladder spasms?

    It's time to go back to the provider's office. There is only so much advice we can give you without someone looking at it.

    pbr
    I was taking Ditropan and went up to 15mg a day but still leaked around the stoma.

    In late January I went on Myrbetriq and for two months, I quit draining. Then started draining again. My urologist doubled my dosage but no change.

    A few months ago he started on Vesicare. There was little to no change (even after he doubled it later). I sent him information on the Duette, but he never got back with me. I called Poesis and got my free samples and had the Duette put in without consulting my urologist.

    I now no longer leak around the stoma, despite the fact that the Duette is two sizes smaller than my normal foley catheter, but when I drink more water than average, I urinate via my urethra.

    I'm going to have my urologist send an order to my home health agency to install another Duette next week. I may see if he'll switch back to Myrbetriq since I had some success with it earlier, but if my sphincter was damaged during my cystoscopy, is it repairable?

  3. #23
    Quote Originally Posted by ~Lin View Post
    Can you wear a condom cath while figuring things out? Don't want to cause skin breakdown. I'm sure it will be a pain in the ass though to have both the bag for the sp and one for the condom cath.
    I never had good luck with condom catheters in the distant past when I'd leak during bladder infections back before the SP catheter.

  4. #24
    Not sure if the sphincter can be repaired
    it depends on what it looks like

    I'm glad your seeing the urologist and you can always get a second opinion if you want

    pbr

  5. #25
    Some time in late October, I quit leaking through the urethra so for about 3 1/2 weeks I have been totally leak free (Knock on wood).

    Before I was using the Duette, I was taking two Vesicare each day and wasn't working any better than one Vesicare daily.
    Now that I've quit leaking due to the new catheter, I'm going to taper back to one Vesicare a day.
    If I don't have any problems, I'll ask my urologist to switch back to Myrbetriq, since it worked best for me earlier this year.

  6. #26
    Senior Member ~Lin's Avatar
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    awesome!!! Congrats!
    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.

  7. #27
    I just heard back from Charlene at Poiesis Medical, and if testing goes well, they will have the Duette catheter in size 20FR available in 3-4 months. I'll post again if I hear anything in a few months.

  8. #28
    Quote Originally Posted by Scott C4/5 View Post
    I just heard back from Charlene at Poiesis Medical, and if testing goes well, they will have the Duette catheter in size 20FR available in 3-4 months. I'll post again if I hear anything in a few months.
    Great news from Poiesis. But it is interesting that several Care Cure Community members who have used larger supra pubic catheters before they tried Duette have been able to scale down to the available sizes offered by Poiesis without any difficulty. It is my opinion that any urologist who places a supra pubic larger than an 18Fr to start just doesn't know what they are doing. If there are problems at the maximum of 18Fr, then there may be justifiable reason to go larger, but no one should have a 20Fr to 24Fr supra pubic catheter placed at the outset.

    All the best,
    GJ

  9. #29
    Quote Originally Posted by gjnl View Post
    Great news from Poiesis. But it is interesting that several Care Cure Community members who have used larger supra pubic catheters before they tried Duette have been able to scale down to the available sizes offered by Poiesis without any difficulty. It is my opinion that any urologist who places a supra pubic larger than an 18Fr to start just doesn't know what they are doing. If there are problems at the maximum of 18Fr, then there may be justifiable reason to go larger, but no one should have a 20Fr to 24Fr supra pubic catheter placed at the outset.

    All the best,
    GJ
    I originally started out with a smaller size. I don't recall what size, but due to leaking, it was increased to a 22fr. I am leaking intermittently with the Duette 18fr, so when the 20fr is released I'll use it... unless the leading stops altogether.

  10. #30
    What you are saying makes sense for you. Just remember, the larger the catheter, the larger the hole becomes. Don't push it up too fast or too large.
    ckf

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