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Is Remission Possible?

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  • Is Remission Possible?

    Does anyone ever get totally better from rhis disease? I was in complete and total remission for 15 years, and the IC came back 4 months ago. Since I got well last time using long-term antibiotics, and since that is no longer an option, I am racking my brain how to get well again. After spending Christmas Eve and now spending Christmas Day alone and in pain, I feel more depressed and hopeless than ever. How do people maintain hope and a good frame of mind with this illness?

  • #2
    I hear you, I"m doing pretty good at times, but never do I get a day completely pain free. When I"m completely pain free for a few hours I start getting pipe dreams of remission. Then the small pain starts, and I"m like this sucks. Even the barely feeling your bladder pain sucks. There is something about bladder pain that drives me crazy.

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    • #3
      I do believe bladder pain would make anyone crazy. It frustrates me when people (with normal bladders) try to compare it to having to “hold it” for a while. Just no comparison. I admit that sometimes I wish that every urologist could have IC for about six months and now know if they would ever get better. I think there would be a lot more IC research going on!!!

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      • #4
        I actually do well most of the time. I know and have accepted that there are specific things that will cause --- and I avoid those almost all of the time. However, I'm far from perfect and I do slip up at times.

        Warm hugs,
        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

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        • #5
          Yes, I have had your feeling too. When I am in pain I lose my usual optimism. That's when I come back to this forum to remember that it is possible, and remind myself to do what I can to get better. My Achilles heel is coffee. But I have come along way to realize I like a cup of warm frothed milk with/without vanilla almost as much. And while I felt I was in a long term remission, menopause has kind of shuffled the deck. So keeping that awesome diet list close by has not only helped me focus, but see new things that weren't a concern before....things I never used to eat and since I was feeling good, didn't realize they could be hurting my bladder. Like vitamins. I never took them before but started taking an immune boosting supplement this winter. I swore by it because I never got sick while others did. Then, during this current flare, I realized that it had Vitamin C and B6 (correction) in it! So I am learning that life and my body change so I have to change and reevaluate too. And I can remember that by the grace of God and perseverance I made it to remission before, so I can do it again.
          Last edited by Chris Schultz; 03-26-2019, 04:37 AM.

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