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Thread: New Mitrofanoff, need some advice, please! =)

  1. #11
    If its in the incision i would think the incision didn't heal correctly and may be like what you have said a fistula. Get to your urologist or surgeon and see what he says
    T6 Incomplete due to a Spinal cord infarction July 2009

  2. #12
    Sorry it's taken me so long to respond back, thank you for all the advice.

    I do have a fistula, the hole opened up and now there is that red meaty tissue (whatever it's called) poking through. And, unfortunately, I'm still leaking out of that and my urethra. I'm trying to cath every 2 hours but that doesn't seem to be enough.

    I had an ultrasound done about a month ago and they had me come in with a full bladder, and then empty it for another picture, and I am getting most, if not all of the urine out when I cath so that was a relief. They said my bladder looked like it was full with about 120ML of fluid, is this normal? It doesn't seem like a whole lot but my bladder has never held urine before so will it stretch eventually?

    My doctor wanted to give the fistula time to correct itself so I see him again in January. I just don't think that's going to happen though, correcting itself that is.

    I've had a couple infections but the last round of antibiotics (knock on wood) seemed to work and I haven't had an infection in a few weeks. But because of the antibiotics I was taking (and my poor eating habits..whatever lol) I keep getting constipated (sorry!) last night I woke up and I was leaking urine out of the hole where I cath on my stomach. This hasn't really happened before, do you think it could be because I'm backed up and it's putting pressure on my bladder? I hope and pray I'm not leaking out of my stomach too. Leaking out of one hole is bad enough, I don't know if I can handle three holes leaking...

    One more question about the fistula, I have a colostomy and with that I have a mucous fistula but it's flush with my skin now and doesn't cause me any problems. My new fistula sticks out of the skin a little bit and I was doing the treadmill the other day and when I got off I noticed it was bleeding pretty good (well, it looked like a lot but on the tissue there was hardly anything) I'm used to my colostomy stoma bleeding and I guess it's pretty much the same thing but it scared me silly. Do any of y'all have a bladder to skin fistula and how do you deal with it?

    Sorry for all the questions, but thank you again for the previous replies.

  3. #13
    Senior Member ~Lin's Avatar
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    Nov 2011
    Indianapolis, IN
    I can't help with most, but yes constipation can definitely press on the bladder and other things. I especially have issues with constipation pressing on my urethra. Before my supra pubic surgery I peed using crede sometimes along with cathing, and the constipation frequently prevented the crede from working.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  4. #14
    What did Urodynamics show your capacity and pressure with contractions to be before the surgery? If it was small, you should have had a bladder augmentation with the mitranoff. Are you on anticholinergics? the first six weeks after surgery you have to make sure there is not much pressure on the sutures or they will bust which typically means cathing every two hours , then three hours the first couple of weeks. You can't keep a tube in because it will possibly mess up the valve then you will leak.
    Or they can do botox to bladder to increase capacity also?
    We rarely do mitranoff except on those with underactive-areflexic bladder with large capacity. Also if you are having strong bladder contractions the anticholinergics will help that.

    I would think to keep the bladder pressure down, increase capacity and cath more often will help with healing.

  5. #15
    The urodynamics test I had done pre-surgery said I had about 200cc capacity, but I've pretty much have the same size bladder that I've had since a child, because my bladder sphincter never worked, I just leaked constantly so my bladder was never stretched (I think). I'm not sure about the pressure though, I'm not sure that I was even told what that was. I was prescribed tolterodine tart (sp) but (and this is my fault) after taking it for several days I started to get really bad heart palpitations so I quit taking it and I never called my doctor for another prescription to try. Do you think it's normal to have that kind of reaction with a medication like that?

    When you say you can't keep a tube in, what do you mean by that? I wear a night drainage bag at night (the only time I leave the catheter in) and that's usually when I leak. For some reason the catheter at night won't drain unless I hold the tube straight up in the air, my doctor said it was probably an air pocket, is this normal? It happens every night, and during the day where I can only hold about 100cc at night when I wake up after a few hours I can drain 300-400cc's at once. I don't know if that's because I'm laying down and my bladder is in a different position, I don't know why it happens. Do you think that stretching (that I'm getting overnight) could be bad for me or good? I kind of thought that any stretching, at least this far out of surgery would be a good thing, but maybe not.

    Also, can weight gain affect the position of the mitro opening? The opening and where the fistula broke through was about 2 inches apart, and because of the stress this surgery has caused me I've put on about 4-5lbs and now the mitro opening and the fistula are about an 1"-1.5" apart. I'm scared the gap is going to keep getting smaller and smaller until there isn't one at all.

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