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  • Regular Flares

    I know I will hear the truth on here, and I may not want to but I guess I need to suck it up. I have had IC for about 4 years...maybe more. I can go for about 2 weeks without a flare while still drinking coffee (frapps with prelief) and beer occasionally. I have given up concentrated tomato anything, fruit juices, sodas etc... I have posted before about if having flares means you are causing more damage each time or if it is just irritated. I got the idea most who responded said just irritated but when I read online (probably causing undo stress) I see stuff that says I am. I am very concerned about what I'm doing to myself and really want to stop coffee or at least cut down to them as a treat but I would be left with not much to drink at all and that makes me angry. It sounds strange but the coffee is something that makes me happy and coffee shops are like a haven for me. How do you stop? I am using quericitin and serrepeptase to control inflammation but do not have anything to coat my bladder. Marshmallow root tea makes me pee more often so that is annoying and elmiron won't be given to me until I cave for a cystoscopy with hydro. A lot of people tell me to get this done but the idea of "cracking my bladder lining open to see what it does" scares me. To me, it would cause more damage and it doesn't matter if I want to because I do NOT have the money. Any suggestions, advice or soothing of my nerves about damage being caused would be welcomed. I want to contribute to others on here but I really need to get myself in a head space and physical space that is positive before I go trying to help others. FREAKING THE HECK OUT!!!

  • #2
    Think you need to see another doc or 2. To insist that you get invasive things done before they will give you Elmiron is a little out there. I am sending you a PM as well. Jill, wife of Bob

    Comment


    • #3
      I do have a suggestion --- and that is to give up the coffee for just two weeks --- and see if that helps. I have found that I can have some of the low acid ones, but I'd suggest extreme caution for a while. You can always get a steamed milk drink at the coffee shop --- they are actually quite good.

      Sending 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

      Comment


      • #4
        Hahaha Donna...u keep telling me that. The good news is that I've given up most of it...just that tiny bit I'm in love with. I am honestly in pain right now because I had curry for Valentines Day. Didn't think about it and boy I swear I will never eat that stuff again!!!!! I'm trying I swear but I need a vacation to detox because working with 130 8th graders every single day makes it hard to say no to that morning bit of coffee LOL

        Comment


        • #5
          I gave up coffee by first changing to half decaf. Then decaf. Then I cut out coffee during the week, then finally on the weekends. I think it took over a year to completely phase it out, but when I was finally coffee free I was surprised how well I handled it. I could still have a weak cup with a lot of milk occasionally, but like any addiction it was easier if I just stayed away from it completely once I had stopped. And I could really tell my bladder thanked me for giving it up so of course that helped.

          I've been in remission for over a year now and have gradually reintroduced coffee. BUt I stopped smoking cold turkey Jan 4 and to make that easier I gave up the coffee again, too, a few weeks before I quit smoking. I started drinking hot black tea with milk, which is something that never bothered my bladder even when my IC was symptomatic. I'm actually really enjoying it in place of the coffee and I don't relate it to smoking so I can drink it without triggering a nicotine craving, or worry about it irritating my bladder. I know that many are not able to tolerate even tea, so dont' know if this would be an option for your bladder.

          Comment


          • #6
            You might want to try Kava instant coffee --- it has caffeine, but is low acid. You can get it in most grocery stores.

            Yup! I sometimes feel like a broken record.

            Huge 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

            Comment


            • #7
              coffee and hydro fear

              I know you fear the hydro and I was one of the ones not helped by it (it is used for diagnoses but also helps some people so you may be one of those!), but after it was done it took me a about a week to really recover, but then I went back to feeling how I felt before. It did not seem to do permanent damage. Some people get some form of relief for a few months so you might want to see if you are one of those. Plus maybe they see if you have ulcers or other problems. Ask them to not go overboard with the stretching and make sure they have IV pain relief as soon as you wake up (assuming you are knocked out as I was).

              However, I agree you should get elmiron if you want just based on symptoms alone if you just can't stomach the procedure.

              I LOVE coffee flavor too and I do break down every once in awhile but it would be good to see how you do without it and then how you do with it with some prelief. There are also NO ACID coffees - I never spent the money for it. I also read about a technique called cold coffee brewing (don't fall for some fancy coffee pot - you just brew it concentated over night in the fridge and it makes it low acid - you can google that). good luck.
              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

              Comment


              • #8
                Thank you everyone for your support. I have tried Kava and other herbal coffees but they tend to make me hurt more so I guess I need to detox soon and bite the bullet. I don't want to be one of those people who know what they could do to help themselves but then don't...that would be stupid of me. I am going to try and find a urologist that will be willing to work with me as far as payment and technique goes for viewing my bladder. Right now, I am using Quericitn and Serrepeptase and they seem to help a lot with inflammation. When I'm in a flare it takes more of them and they don't seem to take care of all of it but I still feel they make a difference. Any suggestions on how to get off coffee without the headaches? The headaches and stress of not having coffee make me flare too. I've been drinking this stuff since I was 10 years lol! I noticed someone (sorry I can't see your name on this reply) has some knowledge of herbal treatments. what is the best stuff to use to coat the bladder? I am fighting inflammation and histamines but now I need something to coat and dull the nerves...this is until I can afford to look at medicines. And...will not taking medicines and only doing herbal and going on "feeling" mean that I will end up worse? This is a very important question for me because I don't want to allow my bladder to just get worse and worse. A lot of people say that you seem to reach a certain point and then plateau. That would be great if true.

                Comment


                • #9
                  Hi Teach,

                  I had the same problems when giving up coffee in January. I was very fatigued and achy all over from it. I think I must have been detoxing, I dunno.
                  One day at my gym, there was a guy selling some energy stuff, of course none of which I could take, so I asked for recommendations to get my energy level back up. I literally hung on every word as he described how our bodies are in a state of acidosis and eating & drinking more alkaline foods can help level our ph. You can google alkaline diet and get lots of sites, but the first thing I did was buy a high ph water. Most good quality waters will list the ph level on the back, the one I got ( Essentia)has a 9.5. It still took a week or so, but I do feel better than I have in a really long time, and I don't need caffeine to wake up or work out.
                  I'm still jealous of people who can drink it!

                  Jana

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