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My IC is in Remission!

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  • My IC is in Remission!

    I am grateful to announce that my IC is in remission. I’m not sure I can specify what/why, but here’s my story. My IC started on New Year’s Eve 8 years ago (2011). It would have taken a year to get through all the doctors and tests I needed in the city I was living in so I went to a clinic in Toronto that does all the tests you need within one week. The only test I didn’t have was a laparoscope to check for endometriosis. The urologist there gave me Elmiron and said if I started to feel better in about 3 months, that would confirm the diagnosis. I learned all I could about IC and followed a bladder friendly diet religiously, had pelvic floor therapy, and even started chiropractic care. It took me a year to become pain free (with an occasional flare afterwards) and I stuck with a strict diet for a full two years. After awhile I was able to eat foods that were forbidden on the diet but I never went overboard. I never started drinking coffee daily again, and I never brought alcohol back into my life (I really didn’t, and don’t, miss it). I also removed suspected problem foods. I learned I was gluten intolerant and have not intentionally eaten gluten since 2012 either.

    So I was on Elmiron since 2012. The whole eye disease issue was concerning to me and I had some major changes in my life this year which included my job, and thus, my insurance plan that used to pay 100% for the Elmiron. So, this fall it was time to try and go off Elmiron. As I reduced my dosage I found I was not having any problems and now I am not taking it any more. My bladder feels normal. It’s incredible to feel this way! I am starting up some supplements, Cystoprotek and Aloe Vera for protection. I take Prelief if I eat something more questionable. I do not want this to come back. But I am so grateful that this disease has subsided, for the time being anyway. I still eat a pretty bland diet, but not as strict as I used to. I’ve also been getting more regular chiropractic care for subluxations of the spine. And, I am now fully into menopause. So who knows what has changed to make this better. I just wanted to share this so others know that it’s possible. I remember feeling like I would rather die than have the pain that I had. I’m glad I made it through and to this point in my life.

  • #2
    Hooray for you! Thank you for sharing.


    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

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    • #3
      He Leigh2!
      How are you doing now? I tried to wean off a elmiron and ended up with a big flare more than a year ago. I was doing better from January to April this year , but I had a flare at the end of April and I am still not stable, some weeks are better and others are worse. Just wondering how you would be feeling now that you have been so many months without Elmiron. Hope you are feeling great.
      IC diagnosed by symptoms at the end of september 2011.
      Other conditions:Asthma (controled since 13 years old )

      PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

      Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

      First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

      Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

      Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

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