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Thread: What to expect with new Supra Pubic??

  1. #1

    What to expect with new Supra Pubic??

    I will be seeing my new urologist this month and I am horribly, horribly anxious as I know there will be nothing but bad news. I've explained previously that I am recovering from a year and a half on a foley and haven't been able to regain full bladder retention that I had previously. I lost two balloons during this past year while on foley so there is definitely urethral damage there and as well, now that I am back to CIC for nearly two months, I'm experiencing insane incontinence. My CIC volumes are rarely more than 100ml. I'm devastated to say the least and utterly terrified at what I'm about to face.

    I'll be having urodynamics and cysto done to see the whole picture but I am 90% sure he will recommend a SP. So to prepare myself for questions, I thought I'd ask the most experienced and knowledgeable people I know! I would greatly appreciate any tips, suggestions and descriptions you can offer. Over the past year I suffered more UTIs than I can remember (one advancing to kidney) and was hospitalized twice. As much as I find the idea of a stoma dreadful as Hell, the infection issue with a catheter indwelling in any matter scares me to death now.

    Thanks in advance!

  2. #2
    Is your urologist a specialist in neurologic urology or female incontinence? Have you discussed an augmentation surgery combined with a Mitrofanoff as an alternative that would allow you to continue with intermittent cath instead of going with a permanent indwelling catheter?

    The risks for UTIs, stones, and upper tract (kidney) damage over time is essentially the same with an indwelling urethral catheter and an indwelling SP catheter.

    One concern may be leakage through the urethra even after having the SP done, if you have a patulous urethra as a result of previous trauma. Generally we do not recommend a urethral ligature or closure for women, as these often breakdown into a fistula which is much more difficult to manage. You may though want to discuss adding a urethral bulking procedure to your SP to tighten the urethra and help prevent such leakage. This is done with injections around the urethral area near the external sphincter. A urethral sling procedure could also be done, but this is a much bigger surgery.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Quote Originally Posted by SCI-Nurse View Post
    Is your urologist a specialist in neurologic urology or female incontinence? Have you discussed an augmentation surgery combined with a Mitrofanoff as an alternative that would allow you to continue with intermittent cath instead of going with a permanent indwelling catheter?

    The risks for UTIs, stones, and upper tract (kidney) damage over time is essentially the same with an indwelling urethral catheter and an indwelling SP catheter.

    One concern may be leakage through the urethra even after having the SP done, if you have a patulous urethra as a result of previous trauma. Generally we do not recommend a urethral ligature or closure for women, as these often breakdown into a fistula which is much more difficult to manage. You may though want to discuss adding a urethral bulking procedure to your SP to tighten the urethra and help prevent such leakage. This is done with injections around the urethral area near the external sphincter. A urethral sling procedure could also be done, but this is a much bigger surgery.

    (KLD)
    No I have not discussed anything with him yet as I have not had my first appt with him. That will be in two weeks. To my knowledge he does not specialize in these areas. I had little choice in finding a new urologist at this time but he came very highly recommended by a doctor I trust completely. Obviously if he seems not up to par with SCI I will ask him for a referral. I just hate the huge cost of transportation and co-pays I am enduring while finding new physicians. He does have SCI patients however, mostly quads that I know of so he at least has some understanding. Thanks, as always, KLD, for your input. I am making my HUGE list of questions. I'd still like to hear from others who have the SP or any of the above mentioned procedures so I can develop a better understanding of how these things will/can change my life.

  4. #4
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    My comments are made with the caveat that when I decided to have a supra pubic catheter (SP) placed, I did not have the complications that you mentioned. KLD fleshed out how these complications may affect your outcome.

    I am a 73 year old male, 35 years post injury, supra public catheter placed in 2010. The SP is the easiest of the surgical methods available to achieve continence The SP surgery is done in an outpatient setting, recovery time is minimal, and reversible. With the Mitronoff and variations of that procedure, the surgery is complex, requiring about a 5 day stay in the hospital and weeks, if not months to full recovery.

    Eight years ago, I had to give up intermittent catheterization. I had tried all the typical methods of bladder management for a spinal cord injured male, condom catheters, intermittent catheters and indwelling urethral foley. I went to the indwelling urethral foley because I had reached the point even with maximum anticholinergics and several Botox treatments that I needed to be cathed just about every two hours around the clock.

    I am quadriplegic and never mastered self catheterization, so my wife and caregiver had to do the catheterizations. Needing to be cathed ever two hours put both of us on a very short lead during the day and interrupted sleep during the night. The indwelling urethral foley helped for a while, but I was constantly battling urinary tract infections (UTI).

    I consulted with a renowned neurourologist at a major university hospital in my region. He explained all of the options available to me, answered all of my questions and I thought about what to do for several weeks. I consulted with my primary care physician and we discussed the pros and cons of my options. Together, we concluded to take a baby step approach. The SP is reversible if I wanted or needed to opt for the more complex surgeries later on and since self catheterization was not possible for me and I needed assistance with it, the SP seemed right for me. I have had the SP for 8 years and yes I have had regrets...that I didn't have the SP done SOONER!

    Around the time I had the SP placed, I read about Microcyn Technology. I began using it and over eight years have only had a very, very few UTIs. Below are links to threads on this forum about the use of electrolyzed water/hypochlourous acid. There are many other discussions. Just search Care Cure Community using the term "Microcyn Technology," "MicrocynAH," "HydroCleanse," "Theracyn."
    http://sci.rutgers.edu/forum/showthr...light=microcyn
    http://sci.rutgers.edu/forum/showthr...light=microcyn

    You may also want to search Care Cure Community using search terms, "Mitronoff," "Supra Pubic." There are quite a few discussions here to read and to help you evaluate what is right for you.

    Good luck!

  5. #5
    Quote Originally Posted by gjnl View Post
    My comments are made with the caveat that when I decided to have a supra pubic catheter (SP) placed, I did not have the complications that you mentioned. KLD fleshed out how these complications may affect your outcome.

    I am a 73 year old male, 35 years post injury, supra public catheter placed in 2010. The SP is the easiest of the surgical methods available to achieve continence The SP surgery is done in an outpatient setting, recovery time is minimal, and reversible. With the Mitronoff and variations of that procedure, the surgery is complex, requiring about a 5 day stay in the hospital and weeks, if not months to full recovery.

    Eight years ago, I had to give up intermittent catheterization. I had tried all the typical methods of bladder management for a spinal cord injured male, condom catheters, intermittent catheters and indwelling urethral foley. I went to the indwelling urethral foley because I had reached the point even with maximum anticholinergics and several Botox treatments that I needed to be cathed just about every two hours around the clock.

    I am quadriplegic and never mastered self catheterization, so my wife and caregiver had to do the catheterizations. Needing to be cathed ever two hours put both of us on a very short lead during the day and interrupted sleep during the night. The indwelling urethral foley helped for a while, but I was constantly battling urinary tract infections (UTI).

    I consulted with a renowned neurourologist at a major university hospital in my region. He explained all of the options available to me, answered all of my questions and I thought about what to do for several weeks. I consulted with my primary care physician and we discussed the pros and cons of my options. Together, we concluded to take a baby step approach. The SP is reversible if I wanted or needed to opt for the more complex surgeries later on and since self catheterization was not possible for me and I needed assistance with it, the SP seemed right for me. I have had the SP for 8 years and yes I have had regrets...that I didn't have the SP done SOONER!

    Around the time I had the SP placed, I read about Microcyn Technology. I began using it and over eight years have only had a very, very few UTIs. Below are links to threads on this forum about the use of electrolyzed water/hypochlourous acid. There are many other discussions. Just search Care Cure Community using the term "Microcyn Technology," "MicrocynAH," "HydroCleanse," "Theracyn."
    http://sci.rutgers.edu/forum/showthr...light=microcyn
    http://sci.rutgers.edu/forum/showthr...light=microcyn

    You may also want to search Care Cure Community using search terms, "Mitronoff," "Supra Pubic." There are quite a few discussions here to read and to help you evaluate what is right for you.

    Good luck!
    Thank you for the reply gjnl. Even though our circumstances may differ, it truly helps to hear your input. How do you deal with the stoma? I've never had any experience with stomas even from a distance and the images I've looked up online have done nothing to ease my stress. I still don't know for certain that I will need a SP but I really want to be prepared with questions for the new dr. Thanks again!

  6. #6
    You will initially need to clean the stoma (and catheter leaving the stoma) daily with disinfectant cleaner such as Betadine scrub or Hibiclens. Apply a dressing (look at "drain sponges") to collect drainage and protect your clothing. Once the stoma is completely healed, and you don't have significant "proud flesh" (hypergranulation tissue), you can just use soap and water, and use of the dressing is optional. Be sure you secure the catheter to your skin with a securement device or tape to prevent it from "pistoning" in/out of the stoma.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  7. #7
    Senior Member
    Join Date
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    East Bay/San Francisco
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    8,630
    Quote Originally Posted by oncetherwasagirl View Post
    Thank you for the reply gjnl. Even though our circumstances may differ, it truly helps to hear your input. How do you deal with the stoma? I've never had any experience with stomas even from a distance and the images I've looked up online have done nothing to ease my stress. I still don't know for certain that I will need a SP but I really want to be prepared with questions for the new dr. Thanks again!
    Generally speaking, you only see the really gruesome, gross examples of stomas on the internet. I've not had any trouble with mine at all. When the catheter is out of the stoma, it almost looks like a second "belly button." It gets a little irritated looking just after a catheter change, but that clears up in a few days. Microcyn is excellent for skin and wound care, and I clean with it in the morning and then again at night.

    There is a catheter, made by a company named Poiesis, that is especially designed for supra pubic stomas. The catheter is Duette. Instead of 1 lumen to inflate a balloon and drainage eyelets toward the bottom of the catheter, this catheter has two lumens, a 10cc and a 5cc and the drainage eyelets are between the two balloons. Here is the website: http://www.poiesismedical.com/products/duette/

    Let us know how your meeting with the urologist goes.

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