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Thread: I'm really nervous about getting a bladder augmentation

  1. #1

    I'm really nervous about getting a bladder augmentation

    Hi, I wanted to bounce some thoughts off of y'all and get some feedback.

    I'm scheduled to have a mitrofanoff and bladder augmentation in a month. I'm excited for the mitrofanoff and the freedom it will give me, but scared about the latter.

    a. It's a big operation
    b. It's irreversible
    c. Correct me if I'm wrong, but every time you cath, the urine comes out mucousy?
    Are there more complications?

    On the other more diapers!!!

    From what I've read here, I'm a little skeptic about botox injections b/c they don't work for everyone and wear off every 6 months.

    Also, if they're already opening me up to do the mitrofanoff, they might as well fiddle around w/my bladder and bowels at the same time.

    Looking for someone to tell me to Just Do It!

  2. #2
    It's a big surgery, worthy of serious thought. Compared to diapers...I'd do it so fast the diaper company would ask what happened to their revenue! November was just a wee pup of your age when she had hers done but I seem to recall her posting the next day, so it wasn't completely debilitating. I know I talked to her on the phone in less than a week. Re the mucousy pee...I saw it when I was a lab tech. It was the least of the kid's worries. I suspect your hospital/doctor/medical systems will be adequately equipped to deal with it, and that's the main problem. I mean yeah, it looks odd, but who else is investigating your pee? If it clogs the caths I think you just go to a larger size.

    You're a grown woman using diapers. It's bad for your self-esteem and especially your skin. That system is bad for the kidneys long-term, imo. You know you're unlikely to croak from an SCI I bet you've had it before. You're not getting any younger, I think you're quite young but you won't be forever. You'll be able to cath basically anytime, anywhere, hopefully by yourself? The mall, the movies, a concert, behind a barn at a keg party? Where you live, I suppose on a scuba boat or in the alley behind an outdoor cafe'? (Not sure how many keg parties are in Israel LOL)

    Such a no-brainer, girlfriend. Just Do It!
    Last edited by betheny; 12-19-2007 at 06:47 PM.

  3. #3
    Although I can't give you any feedback about the procedure, good luck with it Mimin - you'll be just fine. Is it really irreversible? I bet they'd find some way to reverse it in the future when you needed it to be.

  4. #4
    Quote Originally Posted by betheny
    in the alley behind an outdoor cafe'?
    Like all the guys do!

    Quote Originally Posted by Cherry
    I bet they'd find some way to reverse it in the future when you needed it to be.
    Amen to that!!

  5. #5
    Senior Member Timaru's Avatar
    Join Date
    Apr 2006
    Hampshire, England.
    Hey, Mimin, nervous is natural and I think you hit the nail on the head with:

    "Also, if they're already opening me up to do the mitrofanoff, they might as well fiddle around w/my bladder and bowels at the same time."

    Best of luck with the op. and if your dieing of boredom during recovery I'll try to fathom that Facebook thing and you can humiliate me at Scrabble!

  6. #6
    Hi Mimin. I can understand you being nervous, but I can bet you'll be fine. Ten years ago I had both the procedures done and I was scared as heck. I am now soooo glad I did it. The freedom it gave me was enormous. The mucous in the urine really isn't much to worry about and if you drink plenty of fluids the mucous isn't so pronounced. I find if I don't drink alot it does come out much more in clots. You'll have to irrigate everyday through the stoma. I am ashamed to say that I got quite lax on it and only irrigate once every couple days. They enlarged my bladder by taking from the lower intestines. This could give you very loose stool and eventually go away. My stool never went back to normal but I do have it under control, especially if I watch my diet. I am assuming part of your intestines will be used, did they explain the effects it could have on your stool? I unfortunately at times leak from the stoma but I wear protection between my clothing. I don't really want to go through another surgery to correct the valve. Even with all said, I have no regrets, and I doubt that you will. If you have any specific questions feel free to pm me. I'm sure you'll be fine and let us know how it went.

  7. #7
    i had it done in march and its awesome! wayyyy more independence now!

  8. #8
    My experience has been so-so. I had only the augmentation since I can cath easily on the toilet and prefer to keep as much of my body "normal" as possible. Prior to the augment, my bladder pressures were crazy high (spikes above 100, when optimal is nothing above 40), and I had extreme bladder spasticity causing lots of very frequent incontinence. Tried every bladder med under the sun, even at super high doses... Didn't control incontinence. Tried Botox... It lasted three weeks. Finally opted for augmentation.

    On the down side: I've had a slew of UTIs since my surgery (which was in March '06). Apparently, it's expected right after the surgery and is supposed to get better. Not exactly the case with me. I'd been managing really well for two years prior to the augment. Since the surgery, it's been more difficult to keep myself infection free.

    I've also had to continue taking bladder spasticity meds. My doctor told me they'd be a thing of the past. Not so. Even though my bladder's big enough to hold a keg, my spasticity kicks in way before that and I leak.

    My stamina and energy were compromised for a good three months following surgery and I developed a bacterial overload in my small intestine which I suspect was a result of the surgery and with which I am still dealing today.

    And lastly, the extra mucous in my urine makes it a little harder to detect a budding UTI, since it makes my urine more cloudy.

    On the up side: The bladder spasticity meds are more effective now. Though I still have to take them, I take normal doses and they work pretty well. That's a big improvement from the past.

    I definitely have more capacity. It didn't eliminate my incontinence but it did (in combination with the meds) reduce it significantly.

    The mucous has been minimal. And it's my experience too that staying well hydrated helps.

    BTW, my doctor assured me that the augmentation is reversible (I don't know about the valve or how that might affect things). In case you want to look him up, his name is Shlomo Raz and he's at UCLA. He's supposed to be * the guy* in the US for Female Urology and Neurogenic Bladder issues. He's done tons of these surgeries (with and without valves) and tours around the world lecturing on the procedures.

    It's my understanding that my level of injury is to blame for the so-so results (T10/11 complete) and even though some aspects of my experience have been disappointing, I still feel I'm better off post-surgery than pre-. I don't regret having it done and my quality of life IS better. I only wish my doctor hadn't painted such a rosey picture of life post-surgery. It set me up for some pretty hard disappointments. Maybe that's why I'm sharing my experience with you. Even if it's a big improvement, it might not be all roses and it seems, to me anyway, good to know that. I wish you all the best!


  9. #9
    Senior Member jessie.gray's Avatar
    Join Date
    Aug 2005
    Washington State
    My urologist decided NOT to do an augmentation on me, due to the fact that it would cause more harm than good. We are still waiting on my insurance to approve Botox injections to stop the severe bladder spasms that are causing constant leaks.

    I had a mitrofanoff done in May 2006 and like that its so convient to cath while sitting in my wheelchair. Plus, I don't have kidney reflux as badly now. The only downside is that if your bladder spasms a whole bunch, it can cause urine to leak through the mitrofanoff. I am still having to wear the protective underwear or diapers because of this, which is not fun. I joke with my sister that wearing diapers is not a good turn on if you are trying to find a boyfriend. Yes, the urine will have mucus flakes in it all the time, becuase your intestine and appendix produce mucus constantly, even if they are being used for something else. If you are used to checking for a UTI by seeing if there's mucus in your urine, then you'll have to find another way to check for them.
    The only downside to the mitrofanoff (besides my leakage) is that you have to sometimes use smaller catheters than you are using through your urethra. I had to switch from 14FR to 12FR, becuase the bigger ones wouldn't go into the stoma easily and caused pain and bleeding everytime I cathed. I also had to switch from regular catheters to hydrophillic catheters. But, the LoFric catheters are excellent if you have a mitrofanoff, becuase they are easy to insert and will reduce scar tissue from building up in the stoma.


  10. #10
    I had an augmentation and mitrofanoff in 2005. I have no issues with leaking and less uti's. No longer need bladder spasticity meds either. Cosmetically it isn't an issue, the whole area is smaller than a dime and I can now cath anywhere. Before I was having to lie down to cath so my social life was affected and I could only work part time. Now I go to school full time and do whatever I want! Hope this helps.
    c6c7 incomp
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

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