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Anyone had CONTINENT URINARY DIVERSION?

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  • Judith56
    replied
    I have had my continent pouch for over 15 years. I originally had the ileal conduit, but because of numerous problems with it I switched over to the pouch. I LOVE it!!!!!!!!!! One word of caution for the neo-bladder hooked up to the urethra- because for some IC patients the urethra is also affected it is not a good option. Some end up needing to get the urethra removed at a later date and switched over to a stoma so it is cathed instead of the urethra. Also be aware that even though it is hooked up to the urethra, this does not mean that you will be able to pee out of it like normal. You may be in permanent retention and the only way to urinate will be to cath yourself.
    As for Mary's question about setting the alarm at night, yes in the beginning while you are training the pouch you will need to do that, because you are following a strict schedule of when to cath. This "trains" the pouch to hold increasing amounts of urine. With time you will no longer need to do that. For myself, I get a feeling of fullness or pressure that lets me know it is time to cath. If I do not cath, then it becomes painful. I will also leak a bit if I wait too long and I really need to go. Otherwise, I honestly forget half the time about needing to cath and then I will realize it has been a long time since I last did it, so I will go and cath even if I dont feel too full. You do not want to go for long periods of time because if the urine sits in there too long bacteria can grow and you can possibly get an infection. As with everything, do your research, talk to lots of people, especially other patients of the doctor who will do your surgery.

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  • maryla
    replied
    internal pouch?

    Those of you with the internal pouch, do you have to set the alarm at night to get up and drain, or do you just wake up to the feeling of being full and you know it's time to drain?

    Thanks, oh and do you just use a reg. catheter to empty?



    Blessings,

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  • Kara29
    replied
    I love my Indiana Pouch

    So far so good with my Indiana Pouch. I like it MUCH better than the Neobladder to Urethra Diversion. I've only had 2 infections in a year which is wonderful compared to what I had with the Neobladder! With the Neobladder I had an infection every other week. I'd get over one strain of infection and then get another one. It's so nice to not have to catheterize my bad urethra. For me the Neobladder didn't work out. I originally wanted the Indiana Pouch but my Urologist at that time didn't like to do them.

    I use Ampatch Stoma Covers. They are much like a bandaid with extra absorption. I too know when to catheterize because I get a very full stomach feeling. Sometimes a pressure on my rectal area.

    I am very happy with my Indiana Pouch! It holds up to 1000cc's.

    Kara
    Last edited by Kara29; 03-10-2007, 12:50 PM.

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  • smcclafferty
    replied
    Thank you for all of the wonderful info...Kara, how do you feel with your Indiana Pouch?

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  • Roxie2007
    replied
    Hi! Thank you for that info. With my Granddaughter being only 8 yrs old I think she doesn't always let it empty completely before she heads back outside to play! Also she has a little leakage if she waits too long to drain it.
    I'm just thankful that she can lead as normal of life as she has so far. When we first heard she didn't have a bladder and her ureters had grown all the way down and just emptied all the time we imagined the worst possible scenario. But with the help of a FANTASTIC dr. at Omaha's Children's Hospital in Nebraska, she has done quite well.
    I've read that at Boston's University hospital they are doing genetic engineering where they are growing new bladders from the person's own cells over a scaffold that desolves over time and leaves the bladder in the shape it was grown as. SO I have hope that one day my Granddaughter will have a reg. bladder......though she doesn't have a sphyxter muscle......but hopefully the scientists will get that figured out too. Thanks again for the info! Roxie

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  • Roxie2007
    replied
    HI! Your surgery sounds like my granddaughters. She was born without a bladder.....and her surgeon made a pouch inside and connected her ureters to it and she empties it thru a stoma in her navel. My question is: do you know when the pouch is full or do you just empty at certain times of day? When my granddaughter had the surgery almost 5 yrs ago her uro didn't know if she'd be able to know when it was full or not and didn't know if it would grow with her or not. So far it's grown with her and handled her body changes ok. She's 8 yrs old now and drains it herself and does quite well with the whole thing...it's all she's known. I'm very proud of her! Roxie

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  • Kara29
    replied
    Continent Urinary Diversion

    I have something called an Indiana Pouch. The Uriniary Diversion I think you are asking about is called a Neobladder to Urethra Diversion.

    Neobladder to Urethra Diversion
    This procedure most closely mimics the storage function of a urinary bladder. With this procedure, a small part of the small intestine is made into a reservoir or pouch, which is connected to the urethra. The ureters are repositioned to drain into this pouch. As with the Indiana Pouch, this downward flow of urine from the kidneys into the pouch helps prevent urine back up, which helps protect the kidneys from infection. Urine is able to pass from the kidney, to the ureters, to the pouch, and through the urethra in a manner similar to the normal passing of urine. To be a candidate for this surgical procedure, there must be a low risk of cancer recurrence in the urethra, and patients must be able to pass a catheter into the urethra to empty the pouch if necessary.


    There are many types of Continent Urinary Diversions. You can read about 3 of them on the following web site:

    *Ileal Conduit Urinary Diversion
    *Indiana Pouch Reservoir
    *Neobladder to Urethra Diversion

    http://www.clevelandclinic.org/healt...2546&src=newsp

    I orginally had the Neobladder to Urethra Diversion because I had debilitating end stage, refractory IC and had tried every availabe treatment and procedure for IC that existed at that time. It was later revised into an Indiana Pouch.

    Kara

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  • ICNDonna
    replied
    I believe Moderator Kara had this kind of procedure. Hopefully she'll see your post and respond.

    Donna

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  • ~*~Christine~*~
    replied
    We have a few active posting members who have had this done. Most have the internal pouch version but I believe we have some who have external bags as well

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  • tigger_gal
    replied
    I have heard of this being done before. Hopefully some one can hel you out

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  • smcclafferty
    started a topic Anyone had CONTINENT URINARY DIVERSION?

    Anyone had CONTINENT URINARY DIVERSION?

    Has anyone had this done for IC? If anyone doesn't know what it is, it is when they create a "new" bladder from a portion of your intestine, but you are still able to urinate out of your own urethra. Does anybody know anything about it, or had it done? Thank you.
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