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  • #1

    other diagnosis for IC

    i was wondering, I was diagnosed with IC with the potassium test which burned in my urethra not my bladder. The doc said it was what used to be called urethral syndrome but it is now known as IC. I also had an in office cysoscopy which showed a smaller than normal bladder that my doc said was probably not caused from the IC. I have measured my bladder capacity at home and I can hold approx 650cc. I have had every other test known to man done on every organ. The doc said he was certain it IC because everything else had been ruled out so he didn't want to put me through any painful procedures that may cause a flare. Does your bladder always shrink with IC? I was told no by my doc and IC advocate. I don't want to end up with my bladder removed and peeing in a bag. Can anyone answer this for me?

    Kenzy
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  • #2
    The bladder does not necessarily shrink from IC --- some people with IC even have larger than normal bladders. If you are holding 600+ cc your bladder is within normal size range.

    A normal healthy bladder will hold approximately 500 cc (about a pint) and double that under anesthesia.

    Donna
    Stay safe


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    • #3
      If your bladder should 650cc'c without having a hydro, you are doing great Don't sweet the small stuff and that's definately the small stuff with this disease

      I've had dozens of hydro's and in my heart, I truly believe that had it not been for that, my blader could have found a corner, curled up in a bladd and given up toilet Knowing that I have good capacity lets me self-cath before I leave the house and then while I'm in a store and my bladder is telling me I need to pee, my brain says "I OWN YOU AND YOU DON'T HAVE TO PEE" For now, this is an okay treatment for right now.

      The hugest thing you learn (in my opinion) with a chronic illness is to be patience. We want all of our answers NOW, not a month from now. I can't believe how much has changed in the 3 1/2 years I've been on the boards!

      I don't know if this helped any or not but I gave it a shot....one more thing tho. Sounds like you do not feel real comfortable with your uro and if that's the case, I truly think you should start looking for a new one because for so many of us ICer, our dr's are in our lives for a very very long time.

      wishing you the very very best angel
      teri
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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      • #4
        Donna, thanks again!

        Teri, my current uro is wonderful compared to my last one. He's the only one who has actually helped me. I'm just a skeptic about everything. Do you self cath for treatments? I'm thinking of talking to my doc about that. If i did my treatments myself I would have them whenever i needed them and I wouldn't have to wait for an appt. Why do you cath?

        Thanks,
        Kenzy

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        • #5
          When I was having the instillations, my dr did it. But, I suffer from sever retention so I have to self cath for that.....and it NEVER fails at 4:15am I always have to funble into the bathroom looking for my 'stuff', cath and pray I can o back to sleep lmao lmao

          Sometimes ya just gotta laugh becaue if you don't, you'll break and I don't think any of us can afford to do that.
          teri
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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          • #6
            Teri,

            How do you know if you have urinary retention? Thanks for answering my posts. I'm not really new to IC but I was always to read the message boards cause I thought they might scare me. But i needed support and here I am. thanks again.

            Kenzy

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            • #7
              Either I have the actual feeling that I need to pee, that my bladder is full. But, I go in the bathroom and I don't care how many positions I try, I can not get any urine out. OR, I get this really icky feeling all over and for the life of me I can't figure out what it is. It's like I can actually feel my bladder poisioning my body......I break down, I cath, will end up cathing at least 300cc' and I will be fine afterward.

              I went to one uro who would do a distention on me when I would go into these retention modes because my blader neck is so screwed up. I ended up changing dr's and I peed before the instillation and she still cathed between 250 and 260 cc's and asked if this was normal for me. That very day she had 2 home nursed come to my house to teach me how to do it. It is the BEST think that I have in my IC tool box
              teri
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

              Comment

              • #8
                Teri,

                When i first went to the uro I pee'd and they cathed me and got about 100cc. They said a feeling of incomplete emptying was normal with IC if it was only during flares. After a few treatments when I was getting better I had a nurse measure and there was about 40-60. I still get the feeling sometimes but it's only if I keep drinking on top of a full bladder. I used to be bad to hold it and keep drinking. Then I would go and in 10 min I had to go again. i got to where I didn't know if it was a flare or not. Now i'm learning. Thanks.

                Kenzy

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