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Thread: New to forum not to frustration

  1. #1

    Unhappy New to forum not to frustration

    Hi all,
    Been reading through some of the threads and have a question. I have SPMS and a T8-9 disc herniation. Been having urinary symptoms which at times are severe and always frustrating. After testing and trials on most of the anticholinergics, my uro MD suggests a urinary diversion (ileal conduit) to ease the bladder spasms and control the leakage. For the first time since the diagnosis, I feel like I can be an activist in my life by having surgery and being able to optimize the active time I have left instead of being married to the symptoms. I am frustrated as many that I have consulted seem to suggest use of s/p catheters instead. I am concerned about higher potential of infection with s/p use and need for frequent antibiotic use. I have significant allergies to several antibiotics. Self cathing is not an option for me.
    I am concerned about the recovery period and how the MS may be effected by it but on the other hand look forward to the time when my symptoms will be gone.
    Has anyone had a urinary diversion for MS related urinary symptoms? How was the process for you? Did you do anything else instead?
    I really hate this disease and wish I could simply walk away from it.
    Thanks for the help in advance.
    Maggie

  2. #2
    Is this urologist a expert in neurologic urology? A big surgery like a urinary diversion should be the last option, not the first.

    Are you doing intermittent cath now? How often? What anticholenergics and in what dosage and combination? Has he mentioned bladder Botox? Why can't you cath yourself? Have you considered instead of the diversion having an augmentation and Mitrofanoff so you can easily cath yourself? Both surgeries are about the same as far as invasiveness and recovery, but with the augmentation and Mitrofanoff you would not have to wear a bag and appliance all the time as you would with the diversion...and your risks for stones, kidney damage, and UTIs would be lower.

    MS is not fun. My mother has PPMS (since 1980) and does intermittent cath, although she cannot do it herself any more. Fortunately she has the ability to have the attendant support to do this (her physician feels she is too old at 80 to have a Mitrofanoff). She does need a combination of anticholenergics to stay dry during the day and uses padding at night.

    I would definitely encourage you to get at least one more (if not two) opinions from neurologic urologists before going for a diversion surgery.

    (KLD)

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