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Thread: suprapubic negatives?

  1. #21
    Senior Member ~Lin's Avatar
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    Thanks Donno, it was actually reading a posting of yours mentioning it that had me ready to request it when I went to my Uro appointment. I was pretty nervous, but when we were discussing my nocturia I brought it up and asked what he thought about using an indwelling attached to a bag at night. That was when he brought up the SP and recommended it, and the more we discussed it the more it sounded like a much better option! If I didn't have so much trouble with IC though, and didn't have the pain issues with IC I'd prefer continuing to IC and using a regular indwelling at night. But I'd been really worried that I wouldn't be able to do an indwelling at night anyway due to burning because of the burning I feel during IC. Its the worst when I'm removing the catheter, or moving it around after I've started to pee. Maybe it increases due to time in contact with the urethra or something. Originally it burned about the same amount to insert as remove the catheter, and it burned quite intensely for some time afterward. I was told it would get better with time and start to not bother me at all. But its been a little over 18 months now and it definitely still bothers me! Its less intense to put the catheter in, but probably just as bad as it ever was to remove it. The burning after its removed is less intense than when I first started and doesn't last as long. It actually feels like I need to pee, the burning after. When I was leaving the appointment where they taught me how to do it I went straight to the bathroom thinking maybe my bladder wasn't all the way empty, or that I had to pee again, since it still burned as bad. And interestingly (to me, anyway) when I had my kidney stone blocking urine from reaching my bladder it resulted in pretty much an identical burning sensation that felt like I had to pee. However in that instance it stuck around for nearly 12 hours until I ended up in the ER because it had been so long since I'd peed and I just couldn't stand it any longer! I can't remember if it was worse while the catheter was in or not though. But nothing came out anyway.

    One thing I'm still wondering about is I'm a rather small person and wonder where I'm going to put a full 10 inches of catheter on my lower abdomen! It will have to zig zag back and forth or something. And about securing it with my adhesive issues. I was thinking about the leg straps for securing foley's that are adhesive free, but I'd still need to secure it on my abdomen so it doesn't pull. And if I use a leg strap like that, I'd still have to pull my pants down to access it. Where it will be nice to only have to unbutton and unzip pants to access the tube.
    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
    Maybe some underwear modifications would allow the tubing to pass through a hole or slit. If the underwear fits tightly enough, you might be able to tape the catheter to the underwear. While not ideal, you would be able to secure the catheter to some degree, which would be better than nothing.

    All the best,
    GJ

  3. #23
    Senior Member ~Lin's Avatar
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    Has anyone used the duette catheter with a SP? In my research I started reading discussions about pain being felt at the very end of draining the bladder, and that it was a result of the walls of the bladder coming in contact with the catheter. Then it reminded me of the video I'd seen about the duette showing the wall of the bladder getting sucked into the eyelit of the regular foley and the damage it causes over time. Then paying attention to when I IC and how the pain is the worst when withdrawing the catheter and for a little after, I wondered if this was the problem for me. Its definitely not pleasant inserting the cath, but not too bad. Its really the feeling withdrawing it and the lasting sensation afterwards that bothers me. And if this IS the cause, then using a SP would probably still cause burning pain. I wonder if medicaid covers duette?

    My Uro's nurse called me monday to ask me some questions and go over some test results, so I asked a bunch more questions about a SPC and at the end went ahead and scheduled it for September 5th. I'll be having the urodynamics before then but I don't remember what day off the top of my head. They're going to do it under general because my condition causes a resistance to local anesthetics, and I've had paradoxical reactions to heavy sedation. Usually I'm sedated very mildly with 5 IV of valium if needed for procedures. In fact I have an endoscopy coming up where I'll be sedated so I'm much more nervous about getting that done now than the SPC surgery.
    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.

  4. #24
    Hello all. Reviving an old thread.

    Lin - Did you go ahead with SP surgery? How did it go? How has it been? I am at a similar junction.

    For background - I am a c5-6 quad male. Used foley since discharge from rehab almost 28 years now. Bladder has shrunk very low capacity but the foley has been working fine.

    My recent urology appointment (cysto) revealed a stone, as suspected as I have been having more bladder spasms and more frequent blocking at 3 week mark vs usual cath change at 4 to 6 weeks.

    P.S. Last stone I had was 2002 - So not exactly a big regular deal.

    I always used a 14fr but recently (again due to blockage) up'd it to a 16fr.

    Going in for stone removal and uro has suggested we do an SP while there. CHANGE IS BAD IMHO.

    As far as In can tell, there is no significant difference between SP and Urethral in terms of bladder stone and cancer rates. Please SCI NURSE or other correct me if I am wrong.

    I have no issues with strictures or other - So why change? Only pro is a "free willy" which matters less the older I get.

    So why change? Am I just stuck in my way6s?

  5. #25
    Quote Originally Posted by CowboyCrip View Post
    Hello all. Reviving an old thread.

    Lin - Did you go ahead with SP surgery? How did it go? How has it been? I am at a similar junction.

    For background - I am a c5-6 quad male. Used foley since discharge from rehab almost 28 years now. Bladder has shrunk very low capacity but the foley has been working fine.

    My recent urology appointment (cysto) revealed a stone, as suspected as I have been having more bladder spasms and more frequent blocking at 3 week mark vs usual cath change at 4 to 6 weeks.

    P.S. Last stone I had was 2002 - So not exactly a big regular deal.

    I always used a 14fr but recently (again due to blockage) up'd it to a 16fr.

    Going in for stone removal and uro has suggested we do an SP while there. CHANGE IS BAD IMHO.

    As far as In can tell, there is no significant difference between SP and Urethral in terms of bladder stone and cancer rates. Please SCI NURSE or other correct me if I am wrong.

    I have no issues with strictures or other - So why change? Only pro is a "free willy" which matters less the older I get.

    So why change? Am I just stuck in my way6s?
    My impression is that you have been pretty lucky not to have urethral/glans erosion in 25 years of using an indwelling, urethral foley catheter. Generally speaking, over time the urethra and/or the bladder neck may become damaged which can cause leaking around the urethral catheter. Your doctor may be concerned that you are becoming more prone to stones and sediment blockage. While I tend to think it is better to keep the catheter size as small as possible, your doctor may me thinking he can place a larger catheter in a supra pubic stoma than is reasonable to use in an indwelling urethral catheter, making passing sediment easier. Still, if you do decide on a supra pubic catheter, I would ask the doctor to place a 16 FR, at maximum an 18 FR. Then, if necessary, you can increase the size if stone and sediment blockage becomes a problem. Smaller supra pubic catheters cause less irritation to the bladder. A new catheter, the Duette by Poiesis is less irritating than other catheter styles. The Duette is a silicone catheter that has two balloon, a retention balloon and a cushioning balloon. The drainage eyelets are between the two balloon rather than toward the tip of the catheter. Currently, they are available in 14, 16, and 18 FR sizes. http://www.poiesismedical.com/products/duette/ Your doctor may want to use a regular foley catheter at placement, then later you can switch to the Duette.

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