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Anyone had CONTINENT URINARY DIVERSION?

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  • 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.

  • #2
    I have heard of this being done before. Hopefully some one can hel you out
    'The will of God will never take you where the Grace of God will not protect you.'

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    • #3
      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
      IC Live Journal

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      • #4
        I believe Moderator Kara had this kind of procedure. Hopefully she'll see your post and respond.

        Donna
        Stay safe


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        • #5
          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
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:
          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

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          • #6
            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

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

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            • #7
              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

              Double Spinal Cord Stimulator surgery 8/09
              Unsuccessful MiniArc sling surgery 12/07
              Dx'd Hypothyroid
              Dx'd Chronic Axonal Neuropathy & Myopathy
              June 2007
              Dx'd IC May 2006 (after suffering for 25+ yrs!)
              First Cysto 1979
              First Hydro 1981 (Many treatments since then!)
              Collagin"Durasphere" injections for urethra
              Gall bladder surgery Aug. 2004
              Gastric Bypass Dec. 2004
              Dx'd: Barrett's Esphogus July 2004
              Dx'd: Vaginal Atrophy 2005
              Bladder surgery 2000
              Dx'd: IBS 2000
              Hysterectomy (fibroids) 1999
              Laminectomy 1989
              Dx'd: Degerative Disk Disorder 1989

              For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
              I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

              Comment


              • #8
                Thank you for all of the wonderful info...Kara, how do you feel with your Indiana Pouch?

                Comment


                • #9
                  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, 01:50 PM.
                  Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                  "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                  I also have some journals of my journeys, past and some present at:
                  http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                  Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                  Comment


                  • #10
                    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,
                    MARY


                    Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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                    • #11
                      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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