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Thread: SP stoma leaking

  1. #1

    SP stoma leaking

    After 17 years of a problem-free SP cath, leaking has become a major problem. I'm a c4-5 quad 30yrs post and have been taking 5mg oxybutynin twice a da for years without any problems until 3 months ago. At first the leakage was minimal and more of an annoyance but it quickly became profuse. Switching to Myrbetriq didn't help. I have increased the oxybutynin to 3 times daily which has helped but not stopped it. New urologist says my options are botox every 6 months or urinary diversion(ileal conduit). Anyone here have a similar experience? How did you resolve it? Does botox work?

    Cystogram done last week. Cystoscopy completed 2 days ago. Urodynamics scheduled for next week.
    Last edited by weeler; 07-20-2016 at 01:03 PM.

  2. #2
    Before you start Botox or a complicated surgery, give the Poiesis Duette catheter a try. http://www.poiesismedical.com/products/duette

    Many Care Cure Members have switched to the Duette catheter when they have experienced stoma leaking. Here are a couple threads, but you can search this site and find a few more.
    http://sci.rutgers.edu/forum/showthr...ghlight=duette
    http://sci.rutgers.edu/forum/showthr...ghlight=duette

    All the best,
    GJ

  3. #3
    Quote Originally Posted by gjnl View Post
    Before you start Botox or a complicated surgery, give the Poiesis Duette catheter a try. http://www.poiesismedical.com/products/duette

    Many Care Cure Members have switched to the Duette catheter when they have experienced stoma leaking. Here are a couple threads, but you can search this site and find a few more.
    http://sci.rutgers.edu/forum/showthr...ghlight=duette
    http://sci.rutgers.edu/forum/showthr...ghlight=duette

    All the best,
    GJ
    I've actually had one in since 6/30. The leaking continues.

  4. #4
    Quote Originally Posted by weeler View Post
    I've actually had one in since 6/30. The leaking continues.
    Sorry the Duette catheter didn't work for you.

    I haven't used Botox since having a supra pubic stoma placed 6 years ago. I can tell you that I tried Botox for a time when I managed my bladder with intermittent catheterization. My experience was that it greatly reduced bladder spasms the first time I had the injections, but from then on (4 injection procedures in all) the results diminished with each procedure. After the 4th one, I didn't have any response to Botox at all. I did take oxybutynin the entire time I took Botox injections.

    All the best,
    GJ
    Last edited by gjnl; 07-20-2016 at 02:38 PM.

  5. #5
    Hey weeler, I've been meaning to contact you about this but I've been having continuous daily interruptions (SCI life) plus I had an appointment with my urologist yesterday and I wanted to wait until I heard what they had to say.

    I asked about botox and he told me that the injections they do are done around the sphincter to prevent people from urinating due to coughing or sneezing. This sounded different from what I've read on these message boards, so I asked about injecting it into the bladder wall to prevent spasms and he said that doing that "might" be effective but there wasn't a prescriptive procedure for it.

    I thought people were getting the entire bladder botox'ed but according to him they aren't. Am I misunderstanding or is my doctor uninformed to this procedure? And if he is uninformed, how do I go about educating my urologist?

    Another thing, my doctor has never even mentioned doing a urodynamics or yearly scans for kidney/bladder stones. Is that common with other peoples urologists?

  6. #6
    Quote Originally Posted by Scott C4/5 View Post
    Hey weeler, I've been meaning to contact you about this but I've been having continuous daily interruptions (SCI life) plus I had an appointment with my urologist yesterday and I wanted to wait until I heard what they had to say.

    I asked about botox and he told me that the injections they do are done around the sphincter to prevent people from urinating due to coughing or sneezing. This sounded different from what I've read on these message boards, so I asked about injecting it into the bladder wall to prevent spasms and he said that doing that "might" be effective but there wasn't a prescriptive procedure for it.

    I thought people were getting the entire bladder botox'ed but according to him they aren't. (See below. The article says "several injections are made... In my experience Botox was injected into the bladder muscle not just several or a few times, but many many times) Am I misunderstanding or is my doctor uninformed to this procedure? And if he is uninformed, how do I go about educating my urologist?

    Another thing, my doctor has never even mentioned doing a urodynamics or yearly scans for kidney/bladder stones. Is that common with other peoples urologists? My physician recommends urodynamics every two years unless there is a condition that would warrant it every year. My physician recommends renal ultra sound every year to detect stones, growths, etc. He does not do scheduled cystoscopies.

    Botox Treatment for the Bladder

    http://healthcare.utah.edu/urology/services/botox.php

    Botox (Botulinum A toxin) is a powerful drug that acts to temporarily paralyze muscles when it is locally injected. Botox is known for its popular use in cosmetics, but it actually has far reaching medical applications. It is commonly used for diverse conditions like muscle spasticity, headaches, as well as the treatment of urinary incontinence.

    Botox is a well-tolerated treatment and the application of this therapy ranges from simple conditions like overactive bladder to treatment of severely spastic bladders from neurologic disease. In many instances, Botox can be injected in a short procedure in our clinic. The therapy last for six to eight months and then is re-injected. There is no limitation to the duration of using this type of therapy.

    How does Botox treat urinary incontinence?

    Botox has been used to treat urinary incontinence for many years. It acts to decrease the muscular contractions of the bladder. These bladder “spasms” can arise from routine overactive bladder, which commonly occurs in women with aging or they can be more serious in patients with neurogenic bladder from neurologic disease or injury. Bladder spasticity has a lot of different names; it is also called overactive bladder, detrusor overactivity, detrusor hyperreflexia, and neurogenic bladder.

    How is Botox administered?

    Botox needs to be injected into the muscle of the bladder. This is done in the clinic or operating room. First the bladder is flushed with a local anesthesia, via a catheter, which is allowed to thoroughly numb the bladder. Then a scope is passed up the urethra (urine channel) into the bladder. A small needle is placed through the scope and several injections are made into the bladder designed to spread Botox throughout the muscle of the bladder. Most patients tolerate this procedure well.


    Figure: Onobotulinum toxin A is injected with a small needle, through a cystoscope, directly into the wall and muscle of the bladder.

    How quickly does Botox work and how long does it last?

    Botox begins to work at about 1 week, but the full effect of the medicine may take up to two weeks. Botox is not permanent and will last about six to eight months in the bladder. Botox has a prolonged effect in the bladder compared to other muscles where it may only last a few months.

    What are the risks of Botox?

    Botox acts to decrease the strength of the bladder’s natural contraction. It eliminates bladder spasm by this method. One potential side effect of this is urinary retention. In other words the Botox works to well and patients cannot void on their own, or they have some residual urine in their bladder that does not pass with normal urination. Some residual urine does not cause much problem, but if this residual urine is high, or a patient cannot void a catheter has to be placed or a patient has to peridocially pass a catheter in order to drain their bladder. This complication is rare in patients with overactive bladder, because we limit the amount of Botox we inject.
    In patients with neurogenic bladder from conditions like multiple sclerosis or spinal cord injury we use much more Botox than in a patient with overactive bladder. The reason for this is patients with neurogenic bladder often are dependant upon catheterization to start with. In these patients the goal is to inject enough Botox so the bladder does not contract at all. This will eliminate leakage from bladder spasms and patients often are dry in between catheterizations.
    There have been very few instances of Botox ever causing systemic weakness. This is a risk of Botox therapy, but extremely uncommon.

    Summary:

    Botox is a well-tolerated treatment and the application of this therapy ranges from simple conditions like overactive bladder to treatment of severely spastic bladders from neurologic disease. In many instances, Botox can be injected in a short procedure in our clinic. The therapy lasts for 6-8 months and then is re-injected. There is no limitation to the duration of using this type of therapy.





    All the best,
    GJ

  7. #7
    Apparently my doctor either doesn't know about this or doesn't want to do this. I'm going to wait until the size 20fr Duette catheter comes out (hopefully in a couple months) and see if my leaking subsides/quits. (I used a size 22fr regular catheter previously.) If the leaking continues, I've gotta find another doctor.

  8. #8
    Quote Originally Posted by Scott C4/5 View Post
    Apparently my doctor either doesn't know about this or doesn't want to do this. I'm going to wait until the size 20fr Duette catheter comes out (hopefully in a couple months) and see if my leaking subsides/quits. (I used a size 22fr regular catheter previously.) If the leaking continues, I've gotta find another doctor.
    I don't know where in the US you live, but my experience with Botox has been at UCSF in the San Francisco Bay area.

    Have you tried the largest Duette available now? Some people on Care Cure Community have reported that they were using 20 and 22 and 24Fr catheters for their supra pubics and the supra pubic stoma healed around the 18Fr without any problem and the leaking stopped. It may be well to remember and understand that the supra pubic stoma closes very quickly when left open without a catheter or when a smaller catheter is introduced.

    All the best,
    GJ

  9. #9
    I'm using the 18fr Duette and still leaking around it. I'm having it changed as usual tomorrow but I'll ask the nurse if it seems snug during insertion.

    I've been using the Duette since October and my leakage has reduced about 80%, the problem still remains. Even going to a 20fr is still less than what I was using, so unless the nurse thinks its fitting quite snuggly, I need to at least try the larger size to see if it helps.

    Do you know if your doctors do botox on people with SP's and if so do they do it with any regularity? My doctor apparently doesn't do it at all with SP users.

  10. #10
    Quote Originally Posted by Scott C4/5 View Post
    I'm using the 18fr Duette and still leaking around it. I'm having it changed as usual tomorrow but I'll ask the nurse if it seems snug during insertion.

    I've been using the Duette since October and my leakage has reduced about 80%, the problem still remains. Even going to a 20fr is still less than what I was using, so unless the nurse thinks its fitting quite snuggly, I need to at least try the larger size to see if it helps.

    Do you know if your doctors do botox on people with SP's and if so do they do it with any regularity? My doctor apparently doesn't do it at all with SP users.
    I don't know if my physician uses Botox for people who manage their bladders with a supra pubic, since I have not had the need to have that conversation.

    All the best,
    GJ

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