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  • Re: How I Cope With IC - An IC Action Plan

    I have to disagree. It's changed my soul. I am not the same person anymore. I struggle everyday...
    UTI 3/2015
    IC ,PFD
    prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

    Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

    Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


    Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

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    • Re: How I Cope With IC - An IC Action Plan

      Originally posted by Aaarrrggghhh View Post
      I have to disagree. It's changed my soul. I am not the same person anymore. I struggle everyday...
      Me too...but we have to keep faith. Believe me, I know what you mean when you said "struggle every day". Keep fighting...don't give up, please.

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      • Re: How I Cope With IC - An IC Action Plan

        Originally posted by selma View Post
        Me too...but we have to keep faith. Believe me, I know what you mean when you said "struggle every day". Keep fighting...don't give up, please.
        UTI 3/2015
        IC ,PFD
        prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

        Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

        Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


        Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

        Comment


        • Re: An IC Action Plan

          I note that this was written in 2006 which was 10 years ago and that the treatments haven't really changed in 10 years even though the author was excited about the advances in research and possible eventual cures. I don't feel that any thing has advanced in the last 10 years. The treatments are essentially all the same and no real discussion of long term relief on the horizon.

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          • Re: An IC Action Plan

            I just wanted to share that the doctor I fly my daughter across the country to see is one of the most prolific doctors in regards to IC. He is more hopeful than ever. He is hopeful that Liris and possibly AQX-1125 may actually pass fda approval. This would be the first meds in many years that have done so. He is excited about the MAPP Research project going on and feels that this is going to give them some very valuable insight in the years to come. He said more pharmaceutical companies are showing interest in getting involved. He sent me a really hopeful message recently and I do believe better treatments no doubt will be forthcoming in time.
            "Where there is hope there can be faith. Where there is faith, miracles can occur."

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            • Re: How I Cope With IC - An IC Action Plan

              Great letter!! It helps us all to have hope. Thanks
              Have had symptoms since March 2010
              Have tried: Ditropan, Detrol, Aloe Vera, Uribel, Myrbetriq, Vesicare, others I can't remember
              Diagnosed Jan 2016, with cysto/hydro,(no hunners) worked great for 4 months, another hydro in July
              I just started drinking Aloe again and taking hemp oil which is getting great reviews!!
              25mg hydroxyzine before bed,
              25(was on 50) mg Elavil before bed, now on 400mg Elmiron, since about Sept.
              valium suppositories when needed
              Ambien before bed
              for a CURE,

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              • Re: How I Cope With IC - An IC Action Plan

                How do you do #5? What treatment. I'm new and don't have any special meds

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                • Re: How I Cope With IC - An IC Action Plan

                  Originally posted by Borisnan View Post
                  How do you do #5? What treatment. I'm new and don't have any special meds
                  If you mean how do you go about evaluation, you may need to see a physical therapist, but you can also ask the doctor who's treating your IC for a pelvic floor evaluation. It can also help to practice relaxing --- sometimes not an easy thing to do, but can be helpful.

                  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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