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  • Dumb Question

    Maybe this is a dumb question, but I really don't understand what IC actually is... Can someone explain it to me in simple terms? All I know is that I'm being supplied with these pills and I really don't understand what's actually going on in my body.
    **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

    "A bird doesn't sing because it has an answer, it sings because it has a song."
    "The honorary duty of a human being is to love."
    "The main thing in one's own private world is to try to laugh as much as you cry."
    "If you find it in your heart to care for somebody else, you will have succeeded. "
    "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
    "The most called-upon prerequisite of a friend is an accessible ear. "

    These are all the wise words of my hero: Maya Angelou

  • #2
    The way I understand it is that the mucous layer that protects your bladder is broken down. When the layer is broken down, urine irritates your bladder which causes pain/burning etc....

    The Elmiron & the instills are to restore the lining. Some meds are allergy meds b/c your body produces histamines when this is happening. Other meds are for blocking nerve pain which is a result of this too.

    Your doctor should really be explaining this to you though. Does he not take the time with you? What meds are you on?

    Comment


    • #3
      One of my doctors descibed it as having an "arthritis" in your bladder. Meaning that it cramps up and has pain like arthritis does in your joints. My current uro told me pretty much what soccermom said, that the lining of the bladder has ulcers that cause pain and spasming. I have pictures of mine-pretty scarey. There's all these bright red spots all over in the lining of my bladder.
      I too would make sure your uro talks more with you. I know that if yours is like mine they're always in a rush, but you have to be stern with them sometimes. Its your body and you deserve to know what's going on with it.
      Good Luck

      Comment


      • #4
        Interstitial Cystitis an inflammatory disease of the bladder. Inside the bladder, there is a layer that lines the wall of your bladder. This layer is damaged and allows irritating substances in the urine to aggravate and inflame the bladder wall, causing urinary urgency, frequency and pain. These 2 sites tell more about it.
        http://www.ichelp.org/whatisic/AnIntroductionToIC.html
        http://www.ic-network.com/handbook/basics.html
        Work like you don't need money,

        Love like you've never been hurt,

        and dance like no one is watching

        Comment


        • #5
          The Patient Handbook at http://www.ic-network.com/handbook has a very good description.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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


          • #6
            Thanks you all for the information. Here's what my experience has been with my urologist and IC:

            I saw my GYN three weeks ago to schedule my laparoscopy when, upon an examination, he told me that he suspected that I had Interstitial Cystitis... he didn't explain it, didn't even really tell me what it was, but he called the urologist and told him what he thought it was. That afternoon, I was sent to a urologist in the neighboring city where I sat in a waiting room for an hour only to be brought into an examination room to wait another 45 minutes. He came in and asked me about my symptoms, gave me the IC questionnaire thing, which I filled out and got a low score. He told me he didn't think I had IC, but he'd treat me for it anyway and see if it made a difference. That was pretty much it.
            **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

            "A bird doesn't sing because it has an answer, it sings because it has a song."
            "The honorary duty of a human being is to love."
            "The main thing in one's own private world is to try to laugh as much as you cry."
            "If you find it in your heart to care for somebody else, you will have succeeded. "
            "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
            "The most called-upon prerequisite of a friend is an accessible ear. "

            These are all the wise words of my hero: Maya Angelou

            Comment


            • #7
              Andrea -- The only dumb question is the one you don't ask.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                ??? I'm not sure if I can explain it the way my urogyn explained it compeltey...BUT basically it sounded like a heart attack of the bladder...where instead of contracting normally the bladder just sort of shakes and never quite gets the rhythm.. this in turn caused some urine to "sit" in the bladder which in turn "burned" the bladder lining. So he prefers treatment that calms the bladder to allow it to "rest" so it will return to the natural rhythm. ?????
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas
                Louann

                Comment


                • #9
                  The way it has been explained to me is like this - my bladder has 'craters', or open wounds, along the lining.. which is why the urine is like acid. The scar tissue from the wounds can cause your bladder to be able to hold less and less urine at a time. Also, the acid-effect causes the pain and urgency sensation that so many of us feel. The meds are suppose to put a layer of protection over the wounds so they are able to heal and hopefully reduce all of the symptoms that you experience.

                  That's the best way I have been explained it. If you go to wikipedia.com, they have a pretty good description also.
                  I am Jenny.
                  "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

                  Dx:
                  -UTI's and Kidney infections: Since 6 months of age
                  -HPV: November 2005
                  -Advance high-grade pre-cancer cells found in cervix: January 2006
                  -LEEP procedure: January 2006
                  -IC: January 2007

                  Medications (Began Treatment 3/27/07):
                  -Elmiron 100mg 3 x per day
                  -Elavil 25 mg
                  -Hydroxyzine HCL 10mg
                  -Sanctura 20 mg 2 X per day (added 07/24/07)

                  Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
                  -20cc Lidocaine 2% Plain
                  -2cc Sodium Bicarbonate 8.4%
                  -1cc Heparin (10,000 units/cc)

                  Comment

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