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  • another new member.... sad and frustrated

    Hi there,
    A little background on me, I recently got diagnosed with IC, not with tests or anything fancy, but with symptoms that i presented. I'm pretty convinced that I have IC, although it would be nice to have something in paper doing so, but the pain, and uncomfortableness I feel is enough for now. If I think real hard I can say that I've had symptoms for years, but always thought it was either normal, or just something else I had to deal with.

    I can't afford the Elmiron, it's about $500 a month for twice a day treatment, and that's WITH insurance . I'm trying to restrict my diet, but I probably don't have to tell anyone here how hard that can be. I love citrus, I love spice, and flavor, and it seems that I can't have any of that right now. I know that once my bladder calms down I can start adding things back in to see if it irritates, but I'm just a big whiney mess right now because it feels like all my favorite foods and flavors are being taken away.

    I know I know, that or pain, but I'm a foodie, and life is full of wonderful tastes and smells. But I do know that the pain is starting to become real to me, and also, it feels like once I was told that it was ok to feel pain, and to admit to it, it's been worse.

    I am being tested for Celiac(even sadder because of the possibility of giving up white fluffy bread). I know that it's also possible I have IBS too. We are also looking at PCOS, or endometriosis(sp). I want to have kids, I'm getting married in May, and I'm almost 35. I also have Hashimotos.

    That was a long vent.... Thanks for listening. I needed to get it out on paper.

    Much peace~Simplicity

  • #2
    I know you never wanted to be here but you've found a great place for advise and information and by now you know we're all different. I was diagnosed in March and have now found the right combo of meds for me (fingers crossed), Maybe you can ask your dr if he or she can do Elmiron instills and see if they will help. Hang in there you will have a normal life again.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

    Comment


    • #3


      I'd just like to welcome you to the IC Network family.

      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


      • #4
        Thank you both for welcoming me. I really appreciate it. I was doing great today until we bought some strawberries at a local stand. I know I can't have them but my fiancee has diabetes and he can eat as many as he wants, as they are a good fruit for him to have. So I had a few and realized that I am going to miss that. I will start being super serious about this diet on Sunday. I have a wedding tomorrow to go to and then it's head to the grindstone with food journals and everything.

        On top of everything with my health I recently got fired from my job. New management came in and we clashed. So I am a bit stressed out which doesn't help any of this.

        Ok, time for me to go to bed. Just started taking a birth control pill to see if it could help the other stuff I have going on. We'll see.... Hopefully it won't make me more sick.

        Thanks again, simp

        Comment


        • #5
          I purchase Elmiron from Canada and it's $185 a month or 3 months for $541. I would be able to be on it as well without this pharmacy. Like you it was $500 for me (I paid it for my first month just to have it) with insurance. If you want the information feel free to PM me.

          The diet is extremely hard for me as well. I have to have hope that someday I'll be able to eat whatever I want in moderation again. My bladder just need some time to heal.

          Comment


          • #6

            I am sorry that all of this hard things are happening like IC, losing job, etc. I agree that changing food choices can be sooo very hard!! It does get better though. I have been on food thing for almost a month and have learned I can eat a few things that don't bother me like choc. chic cookies that are fresh and NO preservative, peaches, a little bit of vinegar (for oil/vinegar) dressing, gummy candy, and a few others on the no-no list. I do take antacids after I eat this things. i think once you get all of eliminated you can experiment with adding small amount of the food you love and see how you feel the next couple of days. Good luck!!
            -Pammylynn Rose
            Wishing everyone a pain free bladder day!


            Painful symptoms start in May 2011
            Diagnosed with IC in Aug 2011

            MEDICATIONS
            Elmiron
            Axert (only for rare migraines)
            Strict IC diet
            Gluten/dairy/egg free diet


            Comment


            • #7
              Thanks again. How long does it take for the bladder to calm down? Or is that another thing that is individual?
              Take care~simp

              Comment


              • #8
                Unfortunately it's an individual thing. Usually an activity or food flare for me lasts only a few days.

                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


                • #9
                  Originally posted by simplicity View Post
                  Thanks again. How long does it take for the bladder to calm down? Or is that another thing that is individual?
                  Take care~simp
                  mine calmed down a few days going all in with diet. I think i was a lucky one!! Good luck!
                  -Pammylynn Rose
                  Wishing everyone a pain free bladder day!


                  Painful symptoms start in May 2011
                  Diagnosed with IC in Aug 2011

                  MEDICATIONS
                  Elmiron
                  Axert (only for rare migraines)
                  Strict IC diet
                  Gluten/dairy/egg free diet


                  Comment


                  • #10
                    I'm not quite feeling relief yet, but have also been having a hard time being strictly sticking to the diet. i don't cheat a lot, and always with the "try it" items... like cooked onion, that's a biggie, i use onion a lot when cooking. I had a quesidilla yesterday, and ran out of the avocado, so the sour cream in little quantities was put on it.... But mostly I'm just getting so tired of the same flavors of food. ugh.

                    I'm going to get some preleif tonight, to see if that gives me relief. My dr's office called, and she wants to see me sooner, rather than october. So I am going to go in on Tuesday. I guess there are some abnormal things she needs to talk to me about. All this is scary stuff, and i'm trying my best to just take it one thing at a time, but it can be hard.

                    Thanks everyone~Heather(simp)

                    Comment


                    • #11
                      My bladder took quite a long time to calm down in the beginning. My biggest mistake I think was eliminating just one irritating food at a time when for me I should have stopped all of them right from the start for a good while. I'm also a foodie and was really upset over the things I couldn't use in my cooking and eating anymore. It caused me so much anxiety and I missed all my favorite foods so much. I'm used to no caffeine now and I really think I feel better without the nervous energy it gave me. I can have a chocolate chip cookie now and even a few home grown tomatoes. I tried cooked onions the other day and so far so good. Even mayo is now ok in small amounts. I'm not suggesting you eat these I was just giving you some hope that all is not lost and in time you may be able to enjoy some of the foods you used to in moderation or small amounts. I will most probably never be able to drink regular coffee or red wine or lemonade again but I'm ok with that. I am however able to have a vodka martini now and then and I never thought that would ever be possible. Hang in there and try to be patient (very hard I know) but it can get better and easier.

                      Comment


                      • #12
                        Thanks earthlady,
                        I think i'm going to get some carob, I really miss chocolate. I don't drink anymore(been sober for 4 years now), and I know what it's like to give up things, but for some reason food is different.

                        I really hope i don't have a gluten sensitivity, that would utterly suck.

                        Comment

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