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Thread: Getting mitrofanoff. Scared!

  1. #1

    Getting mitrofanoff. Scared!

    Hi all. I don't have an SCI but I have a longstanding bladder problem which means I need to get a mitrofanoff and I think this is the best resource I've found for mitrofanoff patients so I hope you don't mind if I ask a couple of questions here even though I've not got an SCI.

    Basically, my situation is that I'm getting a mitrofanoff in about 3 weeks. The surgeons are going to be using my appendix but my surgeon reckons he won't need to do a bladder augmentation so the plan is for him to just use the appendix to create a channel and that's it. I've asked my consultant some of these questions and he's been very helpful but what I'm really after is a patient's perspective.

    1) Due to a big bunch of reasons I can't catheterise urethrally. Has anybody else who can't catheterise urethrally ever been unable to get the catheter in through the mitrofanoff? If so, how did you deal with it?
    2) My consultant said it might be a while before I can go through the night without taping a catheter in and leaving it on free drainage. He didn't give an exact time because everyone's different. Just out of curiosity, how long did it take you before you could go the whole night without using a night bag or getting up to catheterise?
    3) In your experience, how full does your bladder need to be before you have trouble getting the catheter in?
    4) My consultant told me that it would be a long time before I could start exercising after the operation. I imagine that, if I'm sitting around all day, I'll probably put on a bit of weight. If you gained weight after your mitrofanoff, did it have any effect on the channel?

    I'm also pretty scared about the operation itself. It's by far the biggest surgery I've ever had (although I know there are lots of people here who've had way bigger surgeries) and I'm really worried about the surgery risks. I've decided to have the surgery anyway but as it gets closer I'm having panic attacks and sleepless nights over it. If you're having a mitrofanoff but you're not having your bladder enlarged, roughly how long is the operation and how dangerous is it?

    Thanks everyone.

  2. #2
    Quote Originally Posted by Tanglewood View Post
    Hi all. I don't have an SCI but I have a longstanding bladder problem which means I need to get a mitrofanoff and I think this is the best resource I've found for mitrofanoff patients so I hope you don't mind if I ask a couple of questions here even though I've not got an SCI.

    Basically, my situation is that I'm getting a mitrofanoff in about 3 weeks. The surgeons are going to be using my appendix but my surgeon reckons he won't need to do a bladder augmentation so the plan is for him to just use the appendix to create a channel and that's it. I've asked my consultant some of these questions and he's been very helpful but what I'm really after is a patient's perspective.

    1) Due to a big bunch of reasons I can't catheterise urethrally. Has anybody else who can't catheterise urethrally ever been unable to get the catheter in through the mitrofanoff? If so, how did you deal with it?
    2) My consultant said it might be a while before I can go through the night without taping a catheter in and leaving it on free drainage. He didn't give an exact time because everyone's different. Just out of curiosity, how long did it take you before you could go the whole night without using a night bag or getting up to catheterise?
    3) In your experience, how full does your bladder need to be before you have trouble getting the catheter in?
    4) My consultant told me that it would be a long time before I could start exercising after the operation. I imagine that, if I'm sitting around all day, I'll probably put on a bit of weight. If you gained weight after your mitrofanoff, did it have any effect on the channel?

    I'm also pretty scared about the operation itself. It's by far the biggest surgery I've ever had (although I know there are lots of people here who've had way bigger surgeries) and I'm really worried about the surgery risks. I've decided to have the surgery anyway but as it gets closer I'm having panic attacks and sleepless nights over it. If you're having a mitrofanoff but you're not having your bladder enlarged, roughly how long is the operation and how dangerous is it?

    Thanks everyone.
    I did it in 1988 and it was the best decision I ever made. I am a para and bladder spasticity drove me nuts. Since the surgery I am truly liberated. I never get up during the night and I can go long periods of time. I never get infections. The surgery is a big one and it took a while to recover but I have absolutely no regrets. Good luck

  3. #3
    Senior Member Domosoyo's Avatar
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    My daughter had the surgery and it was one of the best decisions we've made. The recovery varies but we were using the mitrofanoff a month after the surgery.

  4. #4
    That's good to hear guys. Thanks. Did you guys have the bladder augmentation as well, or just the mitrofanoff channel?

  5. #5
    Senior Member Domosoyo's Avatar
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    No augmentation so the recovery was shorter.

  6. #6
    Our doctor prefer not to have the catheter in over night as it can mess up the valve and possible chance of leaking. If bladder isn't big enough then bladder augmentation is done. Starts off having to do frequent caths every 2 hours then spreads out every week by 1/2 hours or so.
    CWO

  7. #7
    Quote Originally Posted by SCI-Nurse View Post
    Our doctor prefer not to have the catheter in over night as it can mess up the valve and possible chance of leaking. If bladder isn't big enough then bladder augmentation is done. Starts off having to do frequent caths every 2 hours then spreads out every week by 1/2 hours or so.
    CWO
    Thanks. In your opinion, would you class a mitrofanoff without bladder augmentation as intermediate or major surgery?

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