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  • Just wondering

    Or maybe dreaming...

    but do you think it is possible to be in remission forever. Do you think its possible to get rid of it?

  • #2
    I'd like to think remission is possible with the right meds like elmiron or a new one when/if they come up with it. Getting rid of it willb e harder since first they have to figure out what causes it then once they get that figured out they have to figure out how to fix it!
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

    Comment


    • #3
      I hope so too!

      Comment


      • #4
        Maybe this will be the year! We can always hope.


        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


        • #5
          I ALWAYS hope this is the day, week, month or year! If not a cure at least a really good treatment. I want my life back.
          Link to the patient information, everything from What is IC? to Disability
          http://www.ic-network.com/patientlinks.html

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

          Comment


          • #6
            I know! Every time the pain goes away I trick mysele into thinking its gone.

            Comment


            • #7
              My sister in law was diagnosed and had bladder instillations for months and also cut all citrus from her diet. She claims to be all better now. It seems like there are varying degrees of the issue and I feel like for some, like my sister, we can heal our bladder wall and essentially repair the damage. But we shall see. I'm only a few weeks into treatment and am trying to keep my hope up.
              Crystal

              Diagnosed 2/2011
              30 years old

              Current Treatment:
              Elmiron
              Antihistamine
              Quercetin
              Aloe Leaf
              N-Acetyl Glucosamine
              Pribiotic
              Yoga
              Meditation
              Leap Diet (based on MRT food sensitivity test)
              IC Diet
              Prayer!

              Planning to try:
              Colostrum

              Comment


              • #8
                hi Chrystal!

                what is the treatment that you are currently receiving?

                oops sorry i meant Crystal

                Comment


                • #9
                  I love philosophical questions like this...will there be a cure. Well a cure would be a miracle for us would it not, but how do we view a cure.
                  I think wiht most conventional medicine a cure is "pop a pill and within an hour/day/week you will feel so much better. That for us is not out there yet.
                  However.....(peers over the top of her oversized glasses) I do believe that Healing is out there right now. Healing however does take time...something we in the west and used to conventional medicine are just not used to doing. Everything inour world is instand ins't it.
                  My son is a Chinese Medical Practitioner (no he is not chinese but you know what I mean and he tells me that Chinese medicne which has been around for 5,000 years against our paltry few hundred does believe that with help the body heals itself.
                  Ok so sorry to be all new agey and weird on you guys, but I have had some of the best 8 months in the past 10 years simply by chaning my diet, accupucnture, herbal teas and meditaion. OkI know I sound weird, but I feel like I am healing, not cured, but healing...hope this gives encouragement to you all. I don't take "meds" as you refer to them, as they are not available on the NHS here in the UK - so its up to us to treat ourselves most of the time. I was offered cystostat (spelling) but decided against it until if ever I go out of remission and need it. My urologist is very understanding andhappy to put me on hold. Lotsa love - Bridget
                  Every time things start getting tough, I just put on my Big Girl Pants and get on with it

                  Comment


                  • #10
                    Diet is extremely important for most people with IC. The link to the latest IC diet food list is in my signature below. Some people with interstitial cystitis do well with no treatment other than diet changes. Most of us do need treatments/medications to go with the diet. The important thing is to do what we need to do to feel better. It's worth the effort.

                    Sending healing thoughts,
                    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


                    • #11
                      Seems to me there are very few "cures" for anything. Most of what conventional medicine appears to offer are aimed at counteracting an effect or alleviating symptoms. Until the body can cure itself, -if the body can cure itself, of whatever has befallen it.

                      I do think a long, even permanent, remission is possible but I don't believe IC is something that it's possible to get rid of. I guess I tend to think of it more like something in my genes that came to pass, and now I have to deal with it as best I can. I have been fortunate enough that I can now describe my IC as very well controlled. But it's still there. I know anytime I let down my preventative guards the symptoms will return as bad as ever.

                      I believe one day they will be able to cure this. Once they find out why we get IC, perhaps down the road something can be made or done to counteract that.

                      Vicki
                      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                      Comment

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