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  • MITROFANOFF

    [ am a 39year old woman who had tvt done in march of last year this has resulted in neverdamage to my bladder and i have a supic cather in as i cannot do isc i am hoping to have a mitrofanoff done in september and i was wondering if anyone had this done and how they have got on
    p cairnduff

  • #2
    I have not had this procedure done, but did want to welcome you to the IC Network.

    I hope others who can answer your question will respond.

    Sending healing thoughts,
    Donna
    Stay safe

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      thank you
      p cairnduff

      Comment


      • #4
        Paula, I am looking at facing this procedure too, probably not for a year or so, when I get the courage. I also have incontinence and cannot ISC, and my Dr. believes I will be in retention after bladder suspension because of neurological damage that makes my bladder not contract well on its own. Most people here have had bladder remmoval because of severe IC not incontience. they have stomas to cath like the Mitrofanoffs, it just is not connected to their original bladder.I would love to correspond with you, you can email me at [email protected] this procedure is used mainly by people with spina-bifida and you might find some support boards that talk about it on spina-bifida sites. Good luck and let me know how you do. Kim

        Comment


        • #5
          Hello, I have IC along with cystocele and rectocele, lately when I am laying down, I must run to the bathroom which is right in my bedroom, and most of the times, I do not make it, the urine just runs out of me, there is nothing there to try and stop it. I was in pft and that did not help, they said my muscels were just not working at all.
          In other words, I cannot stop peeing and there is no holding back. Is there something I can do for this, or do you think I may have a infection, I am having a lot of discomfort down in my bladder at the present time. I also have the pain pump, but lately I have been taking oral meds pretty regular.Is there a way they can tack your bladder up that it will not gush out upon standing, or will they have to take it out completely. Thanks for your help, sure hope you can understand what I am trying to say. Sue [img]redface.gif[/img]
          Sue

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          • #6
            I don't know if this is an option for you, but I take DitropanXL to stop that from happeneing. I was leaking too, could not even make it half way to the bathroom before I was soaking wet. I am 26 and had a cystectomy and neobladder put in, I catheterize my urethra every 3 hours for now, but it will eventually be every 4-6 hours.

            I hope they can find something for you! It's maddening, I know........

            Feel Better real soon!

            Kara <img src="graemlins/hi.gif" border="0" alt="[hi]" />
            "Never take, I don't know how to help you as an answer."

            [email protected]

            Kara

            Comment


            • #7
              Yes Sue they can tack it back up. Go see your doctor! They have improved the procedures in the last few years so make sure you see someone that is using the new techniques.

              Comment


              • #8
                I'm also considering having the Mitrofanoff procedure done. I have Spina Bifida and I have an indwelling catheter at the moment and have been using this method of controlling my bladder incontinence since I was 11 years old (I'm now 30). Over the past few months, I've found this my indwelling catheters block more and more (due mainly to the fact that I suffer from kidney stones) and this is extremely inconvenient, especially as I work and it is starting to affect the amount of time I have to take off work. I would like to hear from anyone who has had the Mitrofanoff procedure carried out and would be interested to hear any success stories. Also, if anyone has any advice for me, that would be gratefully received. Please feel free to e-mail me if you wish. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

                Comment


                • #9
                  To sue 041: If you have a diagnosed cystocele and rectocele, you might consider having them repaired. I haven't had a cystocele, but did have rectocele repair and it was not a complicated surgery at all. I spent one night in the hospital and had to avoid lifting for several weeks.

                  Sending warm hugs,
                  Donna
                  Stay safe

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #10
                    Hello everyone, I cannot remember all your names, I just want to thank you all who answered my question. Yes I must see the doctor, but I am kind of scared, will the cystocel make a difference with the ic? The cystocel is worse than the rectocel I think, I do not know a lot about this kind of thing, so I am scared, but I will go to the doctor before it gets any worse. Thanks again to all of you. I will pray that you all get the help you need and have pain free days ahead. Sue [img]redface.gif[/img]
                    Sue

                    Comment


                    • #11
                      Hello all,I'm 23 yrs old and I underwent the mitrofanoff procedure 12 years ago when I was 11. I was born with a congenital abnomality of not having a working urethral spincter. I had no control over emptying my bladder, was incontinent of urine and forced to wear diapers and pads until I was 11 years old. I had the mitrofanoff procedure done without bladder augmentation, and my bladder neck was closed off. I have been doing CIC through my umbilical stoma for 12 years now and have been very satisfied, the only nuisances I have found with it is that if my bladder is too full sometimes urine will leak from my stoma. The trick is to empty your bladder often and keep to a routine. I usually cath myself 3-4 times a day or more depending on how much fluid intake I've had. I also recently had to have a stone the size of a golf ball removed from my bladder, and apparently bladder stones are known to occur in some cases. It took 12 years for that stone to form and become uncomfortable. But other then that, I am thankful that his procedure has given me the opportunity to live a better quality life. Now that I've become a grown woman, my biggest concern is what to expect when I become pregnant, and pregnancy's effect on my mitrofanoff stoma and vice versa. If Anyone has gone through pregnancy after having the mitrofanoff procedure done, I would be very appreciative if you could email me with any information and let me know how it worked for you. Anyone else who has any questions, please don't hesitate to email me as well! Take care. ([email protected])

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                      • #12
                        Sorry...that was [email protected]!

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