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Diagnosed October 2001

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  • #1

    Diagnosed October 2001

    I was diagnosed via a cystoscopy with IC in October of 2001. I was in pain. I had to urinate all the time. After going, I still felt like I had to go. I didn't know it at the time, but I had a yeast infection too. I've never felt so badly or lonely. This was a very difficult sickness to explain. Even I don't understand it or what caused it.

    I'm on Elmiron three times a day now. I feel much better. I also have taken diflucan for the yeast infections. One thing I've come to realize is that acidic foods and drinks don't help. Also, I tend to have an acidic system. Even a gold ring will leave a black mark on my finger. I was on a self-imposed no sugar diet (candida diet) to eliminate the yeast infection and it helped with the IC. I saw four doctors before I was diagnosed.

    What's the best way to neutralize the acid in your system? Is taking a bath a good thing or bad thing?

    Thanks for the opportunity to write this. I have no one to discuss this with. Unless you walk in these shoes, you just don't understand.
    Tags: None
  • #2
    Hi Lynn,

    Welcome to the IC Network... I think that here you will find a lot of answers and people who really understand what you've been going through.

    I'm so glad to hear that Elmiron has helped you! As for the acidic system theory, I think I have a body that's acidic... I've had high stomach acid for years (half my life actually) and I think it's a system wide thing...

    As far as baths, I think it's individual. I prefer a bath because it helps me keep the yeasites under control... I only shower after swimming.

    Everything it seems is pretty individual with IC, there aren't too many lines that are clear, what works for one of us might not work for someone else.

    Please feel free to ask any questions you want here, we're here to help each other out and give suggestions.

    Liisa
    All obstacles in life are mere opportunities.

    - Jesper Larson, Danish Mathematician

    Comment

    • #3
      Hi, I know a lot of ICers who take sodium bicarbonate daily and find it really helps them. It's worth a try. Indigestion tablets are pleasanter to take and contain sod. bic. also and sometimes calcium carbonate. If your kidneys are affected as well as your bladder however, this is not a good idea. One lady I know - 74 years old - happened on this by chance and was able to avoid surgery! Hope this helps somebody, Best wishes, Janet

      Comment

      • #4
        My best suggestion is to check the information in the Patient Handbook --- you'll find it by scrolling to the top of this page --- it's on the pull-down menu.

        We are all so very different --- some feel they are helped by tub bathing --- I very rarely get in the tub because it causes itching and irritation. I find showering works much better for me.

        Diet is very important and you'll find information on an IC diet in the handbook.

        And if you have questions, feel free to post. We aren't physicians but are happy to share our own experiences.

        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

        • #5
          Lynn,

          Baths are very individual. Some people find that they are comforting and some find that that they can be triggers. People are prone to bladder infections and/or yeast should avoid baths totally.

          I would talk to your doctor about medications that can neutralize the acids in yoiur body. There are a lot of great drugs out there that are very effective in neutrilizing the acids. One drug is Prilocec. This reduces the acids by 92%-94%. It surely not hurt to ask your doctor about it. There are also drugs over the counter that can combat this, but you should really talk to your doctor about it. This is a medical problem that can easily be taken care of with the correct medication.

          Good Luck.

          Diane
          ICNAsstMgr.

          Comment

          • #6
            Diane,

            Why should people prone to yeast avoid baths alltogether? I was told that having a cool bath to rinse off the area without any friction is the best thing for me (as an individual) and I dry myself with a hair dryer on a cool setting - no towels. I was told that showers do not rinse the area and I should avoid baking soda as it is alkaline and yeast are best fought in an acidic environment.

            Once again this shows how individual we all are and that we should talk with our doctors to find out what is best for us as individuals.

            Liisa
            All obstacles in life are mere opportunities.

            - Jesper Larson, Danish Mathematician

            Comment

            • #7
              Liisa: The way it was explained to me is that when you sit in a bath tub, you are sitting there in the bacteria you are washing from your body. And even if you rinse off in the water, the bacteria remains. When you take a shower, the dirt is washed away.

              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

              • #8
                My husband told me that he read an article about whirlpool bath lines retaining water between uses. Bacteria can build up in this water and be added to the fresh water of the next use. This may not apply to all whirlpool baths , but I am not taking any chances with mine, I only take showers.

                Comment

                • #9
                  I have just joined this web site. I have I.C., have had 8 surgeries in past 9 months. I have the interstim implant which was just moved from the right to the left, and things are getting somewhat better. They say I am the only one here in Wyoming but, I don't know, if that is true. We do have more wildlife, and especially antelope, than people. I am just looking to connect with others because I am very isolated out here on the prairie, and only have met other I.C. people when I was in Iowa for my surgery. We don't have doctors here that know much about this at all, if at all. We know about rodeos, cattle, sheepherders, mountains, great outdoor fun but, not this. I take Elavil but, was already on that for irritable bowel, and they also started me on Elmiron but, I want to stop it because I am losing my hair. I want to know more about the magnesium oxide. I can't take baths the doctor said no. I don't sleep well. I keep my spirits up the best I can. I think there is always help of some kind for us, and there is always hope. I think education is the key to this disease to help. I seem to have to constantly educate the medical community as well, as friends. I think only others like me really understand. I am glad I found this network to help out, and to hear what others have to say. Being so isolated makes it difficult to endure this disease. It has made me feel all alone. I am disabled now, and can no longer work but, I stay in the battle against this disease because the next step for me is bladder removal, and I don't want that. I will try about anything that helps. I have been so impressed by what I have seen, and read here on this site, that alone helps.
                  Lynns'Molly

                  Comment

                  • #10
                    Hi Lynn
                    I am glad that you are feeling better. I also had rough times with I.C.I don't know if you heard about "prelief" it's a product that is sold in pharmacies only in U.S.A.and it isn't a drug it reduces acid a lot I use it and am very satisfied i have hardly any burning!!!
                    If you want to find more on prelief go to prelief.com
                    Hope I have been helpful..
                    Kim a Canadian friend...
                    New Brunswick
                    Kim Landry

                    Comment

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