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Has anyone had long term issues from mitroffanof?

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    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?
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    #2
    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).
    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

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      #3
      I have a sprapubic but I though the cancer issues were worse in the long run. I hate the bag too!
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        #4
        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

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          #5
          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

          How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

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            #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
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              #7
              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

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                #8
                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!"
                http://www.elportavoz.com/

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                  #9
                  Doing an augment can cause cancer?
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                    #10
                    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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                      #11
                      My daughter is a nurse and working with bladder and prostate cancer and she said in those four years she has been working there, it has been two people with SCI. She is scaring me and tells me it is worse smoking LOL, I smoke...
                      TH 12, 43 years post

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                        #12
                        can i say again that i think its time to find a new uro? your guy is definitely trying to talk you out of it. after 15 years of indwelling foley catheter i had no choice but to start looking for alternative answers because my urethra was so stretched out it was no longer staying in. several people suggested i get evaluated at hopkins and the uro there kept pushing the supra over the mitro and saying why would i want to deal with such a surgery and blah blah blah when the supra is so easy. i went to see a different uro and he immediately got that i had a life and wanted freedom and independence. since it had been 15 years my bladder was no longer able to hold anything so i did have to have the full augmentation. but the stuff he is telling you is so nothing compared to what you do every day as it is. i love my stoma and wish i had known about the surgery years before (my surgery was almost 10 years ago). i love that my husband can touch my legs and i dont have to worry about the bag. i love that we can go to the beach and i can wear a bathing suit and not have to worry about covering my bag. i love that my boys can climb up on me and i dont have to worry about them grabbing something they shouldnt. my stoma is smaller than a dime. pm me if you want to discuss this further because honestly i will talk you into it. i cant even begin to tell you how great it is to go to the airport and be frisked and not have to explain the long tube hanging from my leg is medical. i love it all and frankly everything these days will give you cancer. reports of microwaving plastic and excess cell phone usage. i am rambling now but you get my point.

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                          #13
                          I did find a neuro Uro and she's awesome and all for it. I have just only heard some good stuff but wanted to know about the cons. I'm scared really
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                            #14
                            of course you are scared. it is a huge decision and obviously one that shouldn't be taken lightly. but i can't even describe to you how amazing being bag free has been. i had several occasions while at work that my leg bag started leaking or it got too full and had strange buldges on my leg. frequently the cath would clog up and start leaking so i would be peeing all over myself. i hated it and was constantly embarrassed by it. i personally love mine and wish i had known about it so much sooner than i did. i realize you are only a couple years post injury but now at almost 25 years post injury i can honestly say that this surgery has been the best thing for my self confidence. i started dating my now husband while i still had the bag and he was obviously understanding so it clearly didn't affect that but the way i feel about myself and our relationship is 1000 times better without the bag. he will also tell you how awesome the surgery is. i dont have a supra and never have so i dont know how easy it is for it to get pulled out or leak but i love not having to worry about it. i love being able to go to disney and have my family get me on rides without worrying about who is going to feel what or if it gets tugged on while getting on and off rides (which happened in my bagged days). i love how cute my son was when he was 2 and was trying to figure out how to put my cath into his belly button so he could pee like mommy. i love that on an airplane i can throw an empty bottle into a bag and pee right from my seat without worrying about showing anything or having anyone really notice anything. i love not getting so many uti's. i love that when i was huge from pregnancy i could still be independent and cath myself. there is absolutely nothing i regret about my decision. i am a huge commercial but i trully believe in this surgery. is there something specific you are worried about or just the overall unknown?

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                              #15
                              My only long term issue is bladder stones. For me they are caused by excess mucus. Excess mucus occurs when I have bladder infections. Eg. when I'm on anti-biotics and then afterward when infection free, I have almost no mucus. Get a few bacteria in there and I produce more mucus. (I had the augmentation, so might not be a big issue for those with just mitro). Since starting with Vetericyn, my infections & mucus are reduced and no stones in 6 months. I hope this continues into the future.

                              Having said this, I wouldn't go back to pre-mitro days for a million bucks. I feel so free and unselfconscious (is that a word?) now.

                              ETA: oh, my stoma is just below my underwear line so doesn't even show with a bikini. not sure if a complete quad could do this without finger dexterity, but if you can undue a button or zipper, it's a great placement option.
                              Last edited by loreo; 22 Nov 2011, 5:17 PM.

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