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Thread: Why has my bladder stopped working?

  1. #1

    Unhappy Why has my bladder stopped working?

    I am 35 and a C-5 quad. For 17 years I have followed a schedule of intermittent catheterization three times a day to drain my bladder completely. I have also had the ability to void some of my urine involuntarily into a leg bag. This “system” has worked great. Approximately 4 years ago, there was a day when I got my typical, mild dysreflexia symptoms, but they continued for an hour. I decided to catheterize ahead of schedule, and I found that my output was 2-3 times the normal amount. My dysreflexia symptoms stopped immediately. So, apparently, my bladder reached a point where it needed to empty but, for some reason, refused or was not able to do so. This problem occurred again about 6 months later and then again about 3 months after that. It eventually reached a point where it might happen a couple times a week.
    Now I do not void on my own. On rare occasion I will void unvoluntarily but only if I am lying down in bed. This happens only sometimes and with very little output. I no longer void while sitting in my wheelchair. I also now must catheterize every 4 hours. As many of you know, this is inconvenient and expensive.
    I have researched on the internet and learned that the pudendal nerve controls the bladder sphincter. I believe this could be my problem. Confirming this is the fact that I no longer get erections (except sometimes when lying down), a problem also associated with the pudendal nerve. I recently had an MRI to check for a pinched nerve, but no problems were found. I also recently had a urodynamics test, which found that, when my bladder contracts, my internal sphincter does not relax. My urologist wants me on Ditropan to stop my bladder from contracting, because urine could then be pushed back up into my kidneys. My urologist still does not know the cause of my problem and is not interested in finding one. I am not content with that. Before I start prescription drugs or have a procedure, I want to find the cause and try to resolve it. Am I naïve in thinking I can find the cause? What about the pudendal nerve?

  2. #2
    Dave, when you had your urodynamics, which was your voiding and resting bladder pressure? It sounds like you have been voiding with high pressures for some time, which over time can just wear out your bladder muscle (called decompensation). You AD problems would be symptomatic of this as well. This is common for men with SCI who use reflex voiding for bladder management. It is unlikely this has anything to do with your pudendal nerve. Over time, voiding with high pressures can also lead to kidney damage and hydronephrosis.

    Your options at this point are either to go with intermittent cath 24/7, using the meds to decrease your pressures and prevent leakage, or to try to continue with reflex voiding, or to go with an indwelling catheter. In order to do reflex voiding, you would undoubtable need to consider a sphincterotomy or urethral stent surgery, and even then there is no guarantee that you would empty sufficient to not need to do intermittent cath at least several times daily in order to get rid of residual urine. These surgeries would result in leaking all the time, and are not reversable, so would require you to use an external long term even if you also have to cath.

    Do you do your own caths? I was wondering about your comment about intermittent cath being expensive. If you have to pay someone to cath you, I could understand this being a limitation for you, but if you cath yourself using clean technique and clean and reuse your catheters, it should not be an expensive form of bladder management.

    It is unlikely that your erection problems are due to pudendal nerve problems either. Although you are only 35, it is not unusal to start having some changes in erections at 15-20 years post injury. You may want to explore the use of one of the ED drugs (Viagra, etc.) as this helps many men with SCI who have undependable reflex erections.

    I would also strongly recommend that you find another urologist who is more expert in SCI, as this is a common problem and it concerns me that your urologist does not seem familiar with SCI.

    Last edited by SCI-Nurse; 07-26-2005 at 09:16 AM.

  3. #3
    Thank you, Sci-Nurse.
    My urologist finally returned my phone calls yesterday. He said he has not yet received my urodynamics results (I had the test about a month ago). He still wants to put me on Ditropan. He's not a fan of stents, sphincterotomies, or super-pubes. Am I always going to have to cath every 4 hours? In answer to your question, I am not able to self cath.

  4. #4
    Senior Member smokey's Avatar
    Join Date
    Jul 2001
    Massachusetts, USA
    BigDave, the same thing happened to me about 6 years ago when I was 21 yrs. post injury. I had been using the condom drainage/legbag/bedbag set up from day one. For 19-20 years it seemed to work OK. By the 20th-21st year, voiding became increasingly difficult with pronounced sweating, decreased volumes and frequent UTI's. I woke up one night in a full sweat, pounding headache, hot as hell and complete inability to void. I was only a couple of minutes away from calling 911. Thank god we had a catheter in the house as I ended up cathing myself for 1200cc. I had a Urology appt. shortly afterwards with urodynamics studies and cystoscopy exam. Apparently, over the years I had built up collogen in my bladder wall from straining to void and it simply reached the point where it could not contract anymore due to the thickening of the bladder wall. The "detrusor muscle" was unable to contract and squeeze out any urine. Now I catheterize myself and couldn't be happier. Haven't had a UTI since and get out all the urine (there is ALWAYS a residual with condom drainage). I've heard many folks get suprapubic tubes and are quite happy with the results. I say forget sphincterotomies or stents. Like KLD said, get another opinion from a SCI urology doc. Hope this helps.

  5. #5
    Thanks, Smokey. I've had my bladder scoped twice and was told it looked remarkable, especially after cathing for 17 years. Other than that, our experiences sound familiar. Are you on any bladder meds?

  6. #6
    Senior Member smokey's Avatar
    Join Date
    Jul 2001
    Massachusetts, USA
    BigDave, I was always on 1g. Vitamin C 3X day, 1g. Mandelamine 3X day to prevent UTI's. I was put on 5mg. of Ditropan XL once a day about 6 yrs. ago when I had the bladder thing happen to me. I am now on 10mg. of Ditropan XL once a day. I find no unwanted side effects at all from the Ditropan. I do insert a regular catheter at night, tape it to my monster, hook up the night drainage bag and wrap a Dale catheter strap around my thigh to anchor the tubing to my leg. I drink as much fluid as I want during the day (catheterize) and also at night (goes into the drainage bag). I sleep through the night EVERY night except to sip water and always have about 1500cc-2000cc in the bag by morning. I take the catheter out in the morning after I crap and cath as needed during the day. So far it has worked out well. Probably not for everyone but it works for me.

  7. #7

    Question Bladder dilema

    Pardon me for reviving an old thread

    My bladder too has stopped working.

    I have been on condom drainage for 13 yrs. Everything seemed fine till around March this year where I seemed to get no end of UTI’s and sweats and thumping pains in my bladder regions.

    I had ultrasound scans in June and there were no stones and my kidneys looked ok, but I had a residual of 800ml.

    I have been cathing twice a day morning and evening for the last 5 weeks and have been getting an average of 700mls every time.

    I had a bladder urodynamic scan last week and I was told that my bladder looked “very old…like a 90yr olds” which made me feel full of the joys of spring! (Not!)

    When I was in rehab back in 1995 I tried cathing but between my tetra hands and leaking in-between caths it was decided that I’d be best off just with the condom drainage system.

    I have been ok with that all this time, and following advice you get from rehab and spinal clinics I have always drunk as much as I wanted, to flush out all them bad uti bugs etc, and I love my beer tea and coffee etc!

    The urologist told me I had probably been drinking too much putting the bladder under too much strain etc

    She gave me these treatment options, which I will need to discuss with her next month

    1. Sphyncterotomy, not keen, irreversible, pee all day and probably no more errections, I’m 35 young (but with a 90yr olds bladder of course) free and single and I really don’t fancy this option.

    2. A stent, again so I pee all the time, which I have been used to for many years but she gave me the impression that this usually isn’t successful.

    3. Enlarging my bladder by cutting some of my bowel (whaaat?) to make the capacity bigger somehow so I only need to cath twice a day (I told her as I was a tetra I find cathing from the chair difficult - getting my trousers up after pulling them down etc and that I found it easier cathing on the bed)

    4. A Foley/Indwelling catheter, although there seems to be a big UTI problem with it, plus you have to change it every few weeks or so?

    5. Or cathing 6 times a day. I have been managing this ok so far, and even got the hang of the pulling of the trousers up from the chair (I have always worn tightish jeans), albeit with much wriggling and writhing and chair back and upholstery bashing.
    It’s a big lifestyle shock for me to be doing this, and I’m borderline tetra/para (c6/7) I’m wondering how I’m going to cope with being out etc wondering where I’m going to find a place to cath in private etc

    I’m currently contemplating the stent or the 6 times a day catheterising.

    I’m (so is the skin of my penis after 13yrs in the wetlands) enjoying the dryness of cathing, but I still find I have a bit of leakage in-between caths, and the whole inconvenience of being out and about and of the panic of finding facilities etc very daunting.

    If the stent is what I think it will be like, at least I’ll be back on familiar ground, but again having to wear a condom 24/7 and wet all the time.

    Is it really ok to keep one of these throw away catheters in place overnight and connected to a night bag, I’d never thought about that, as I have been having leaks in-between caths as I sleep?

    Any advice / personal opinions / experience with any of the above will be most welcome.
    Last edited by brython2; 11-03-2008 at 07:30 PM. Reason: said conveen instead of catheter

  8. #8
    #3 iis called a bladder augmemtation and the stoma is on your belly and easier to reach.It is major, major surgery with a big incision but most people like it after they recover.


  9. #9
    Thanks for your reply SCI-Nurse.
    This option terrifies me..

  10. #10
    It is a major surgery and the incision is a very pretty long but I haven't met anyone yet who had the surgery who about a month after it is over is not happy with the results- & it lasts lifetime.
    Irrigation of the bladder is needed for about the first two years.
    It is an option.

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