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  • #16
    Maggie,

    I know that was a hard decision, but I also know you have thought long and hard about it. I am glad that you feel peace with your choice. I will keep you in my prayers.

    Hugs,
    Amy

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    • #17
      Thanks for all your kind words. I am at peace with the decision. There seems to be another glitch moving in which is too hard to explain here, just keep it in your prayers.
      I am moving in July and will probably be about 300 miles away from Dr. E. when the surgery will likely be scheduled. I need to get a second opinion for insurance purposes. I just don't know how to do that. I have a call in to the doc, but I havent' heard from him yet.
      Your support means the world to me. I count on it. Whatever I can do for you, let me know.
      Maggie

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      • #18
        Maggie,
        I had my bladdder out in Feb. this year. It was the best decsion I have made yet,since I lost my interstim. I had researched it alot and Got lots of support from the other Icers here! I wish you the best! I will be praying for you!
        Hugs & Blessings,
        Eva

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        • #19
          Eva, I'm anxious to hear how you are doing. This is April and you've had some time to recoup a bit. How are you feeling? What kind of reconstruction did you have? Before you left the hospital, were you completely comfortable with how to take care of yourself? These are some of the concerns others in my family have about the surgery.
          I truly hope you are feeling well.
          Maggie.

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          • #20
            huggsss

            GROUP HUGGG!!! I FEEL YOUR PAIN! I'M SO WORRIED ABOUT MINE AS WELL BECAUSE IT ALREADY HOLDS SO LITTLE!! YOU ARE INDEED IN MY THOUGHTS AND PRAYERS.. I ADMIRE YOUR COURAGE. KEEP ON YOUR TRACK AND DON'T EVER LOOK BACK!! WISHING YOU THE BEST OF HEALTH AND SENDING YOU THE WARMEST OF REGARDS .. less trips to the lavatory sure would be nice too ay?? KJD
            Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

            Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

            Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

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            • #21
              Prayer for Surgery

              I am 5 months out from my surgery. It was a rough go at first but I have NO REGRETS!! I pray all goes well and you have a good Dr. Just get books magizines and plenty of movies to watch because for the first few weeks you are not going to feel up to much. Also loose clothing I stayed mainly in gowns for 4 wks do to the tubes.But now I am up and going when I was able to go for 3hrs before going to the little girls from I wanted to throw a party! I know how you feel and I hope time flies by fast and you get the relief you so deserve.If any ?? dont hesitate to ask. Also everyone here are great listeners and walking info. Good Luck and Wishes

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              • #22
                I'm 5 months post op too !!

                I had my op in november last yr.
                For a while everything went ok, but 5 months done the line I am having some very bad problems, and have to have it all done again.
                This does' not mean things like this happen to everyone,infact there are some really good sucess stories on here from people who have had the same op as m and are living a normal and healthy life.
                I wish you all the best.
                take care xxx
                Last edited by mum43; 04-09-2007, 04:23 AM.
                I have had IC and PBS for 20+ years.
                Tried every medication I can think off.
                Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                4th october 2007.

                Check out my profile on www.myspace.com/surreychick.
                if you want to know more about me.

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