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Thread: Has anyone had long term issues from mitroffanof?

  1. #1

    Has anyone had long term issues from mitroffanof?

    I talked to m Uro today but got scared. Mucus sucking...bowel issues...weird looking skin a the entry?

  2. #2
    Senior Member lynnifer's Avatar
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    What about a superpubic? That would be what I would do in your situation - most definitely - and according to glnl it's reversible and quite a simple procedure?

    My friend is a quad and has had it almost the entire 23yrs and it works well for her.

    I was afraid of the cancer risks and bowel tissue and big surgery as well (my bladder has shrunk a little over 2yrs of foley use).
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  3. #3
    I have a sprapubic but I though the cancer issues were worse in the long run. I hate the bag too!

  4. #4
    Senior Member lynnifer's Avatar
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    My friend doesn't wear the bag except at home .. she monitors what she drinks and knows her body well to know how long it takes. This will become second nature with practice?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5
    Quote Originally Posted by lynnifer View Post
    My friend doesn't wear the bag except at home .. she monitors what she drinks and knows her body well to know how long it takes. This will become second nature with practice?
    Wait, what? I just had my suprapubic surgery a few weeks ago (and the site is STILL draining and requires bandaging), and no one mentioned not having to wear a bag at all times. Does she just clamp the catheter? I thought that was dangerous. I'm still leaking and need another (increased dose) injection of botox, and am intrigued by the idea of not having to wear a leg bag all the time. I actually see my urologist tomorrow for a post-op evaluation and will discuss it with her.
    Somewhere, something incredible is waiting to be known. - Carl Sagan

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  6. #6
    I have a plug but I'd pee on myself. Plus I can't pull the plug with quad hands. I really want mitroffanof. Just want to know about complications. I've heard a lot of good

  7. #7
    Senior Member lynnifer's Avatar
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    She does clamp it when she goes out .. she monitors what she drinks and knows her body well. I've seen her have an accident once in a while where the stoma is, but not in a long time.

    When we lived together the only time she used a bag was overnight.

    Very disciplined in drinking water all the time - never coffee, tea and hardly any soda. Never any fruit juices.

    I'll see if she can answer your questions .. she's on my facebook .. or I could just call. LOL
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #8
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    i dont have abnormal scarring. the only complication i've had is abnormal cells (mind you, i have the augment) about a year ago. now i have to be scoped every 6 months to make sure i'm in the clear. but i havent had any of the symptoms i had last year so i just keep that in mind. i'm due for an appointment soon tho...
    "Smells like death in a bucket of chicken!"
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  9. #9
    Doing an augment can cause cancer?

  10. #10
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    Quote Originally Posted by ECUrach85 View Post
    Doing an augment can cause cancer?
    there is a slight increased risk of cancer along the area where the bowel meets bladder. and the enzymes that the bowel produces can potentially cause abnormal cells to form. which is why flushing the bladder with saline is important. i do it once a day. the mucus was only really bad in the beginning so i flushed after every cath. looked like slugs in the syringe but that only lasted a month. now my urine is just slightly more viscous and flushing isnt that difficult to do.
    "Smells like death in a bucket of chicken!"
    http://www.elportavoz.com/

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