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  • #1

    Question about vitamins and multi-vitamins

    Hi,

    I read someplace and it leaves me now where, though I think it was one of the magazines that ICN puts out. However, I read that an IC patient could not take regular multi-vitamins. Is this true? And, if so what vitamins are essential for us to take? I think I read Calcium Carbonate or Citrate.

    Thoughts? Thanks for any you may offer about your own personal experiences with IC.
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.
    Tags: None
  • #2
    My hubby is a big believer in vitamin C and when I saw that it causes more pain in IC patients I could not help but ask him was he trying to kill me? He only was thinking of helping my immune system but I know that C can make it worse.
    Maybe some of the others know more about what we can take.
    Faith is not believing God can; Faith is believing God will!

    Comment

    • #3
      Vitamins continued

      Georgia,

      Thank you. Does anyone else with IC take any vitamin sources or know what we can handle? I am so SCARED to try any, so for now I discontinued my use of the one a day multi-vitamin I was on because I felt a lot of irritation (still am) and was trying to pinpoint why.

      The issue is that I still can't figure out why I have been in an IC flare for over a month (ever since I was diagnosed with the hydro), I have been hurting and having bladder spasms and retention episodes horribly...like everyday. I am so scared about WHAT is going on....and my Urologist just walked in the room the other day and said, "Mrs. Chen, your case follows no pattern...so I don't know what to do with you anymore..." Well, this was before he let me get another instillation of heparin and lidocaine. This is ALL with pain medication that has given me any relief.

      Is it really possible that my bladder was overstretched? Can that happen? I still know so little about IC compared to some of you on this board...so PLEASE help me. This has been my saving grace...with God and my husband and family too. Anyway, I am sorry for all the questions, but I hope the more I learn I can help someone else too.

      April
      Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

      Comment

      • #4
        HI! Have you tried Elavil? It really helped me a great deal after years of pain. Also......I just started using MSM gel. I'm singing the praises of it. I have not had a flare in 10 days....since I started using it.... and no longer have urethra pain! YEAH!!!!!!! Sounds like your dr. is at wits end.....I hate when they get to that point......but been there done that! Good luck to you! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment

        • #5
          oops forgot to mention about Vitamin C........I take a multivitamin twice a day. Taking Vitamin C alone.....bothers my bladder and Calcuim does too, sometimes. So I chop them in two peices and take them through out the day instead of all at once.....that seems to help.

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

          Comment

          • #6
            Vitamins

            Ladies I take Natrol Ester-C 1000mg I bought it from the IC Store and it does not bother my bladder, I also take Glucosamine,Chonditin,msm from the Natrol brand as well and I am ok.

            April
            I am on the rescue instills as well and 400mg of Elmiron and it works. Dont give up I know its hard. I will keep you in my thoughts and prayers.
            Blessings,
            Ruth

            Comment

            • #7
              Some ICers can tolerate children's vitamins easier than the ones made for adults.

              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
                Originally posted by Roxie2007
                HI! Have you tried Elavil? It really helped me a great deal after years of pain. Also......I just started using MSM gel. I'm singing the praises of it. I have not had a flare in 10 days....since I started using it.... and no longer have urethra pain! YEAH!!!!!!! Sounds like your dr. is at wits end.....I hate when they get to that point......but been there done that! Good luck to you! Roxie
                Hey Roxie,

                Yes, I have been on Elavil for seven months. The benefit did not outweigh the enormous amount of weight that I gained. I noticed NO difference and if anything, my pain was worse...because during that time I also had a lot of kidney infections.

                What is MSM gel? Can you get it over the counter for urethra irritation? Maybe that's why I am sore down there from SO many catheters. Also, how do you use it? Is it topical?

                Please pray that our health insurance (tricare) because my husband is active duty Air Force approves for me to see this IC specialist that is 70 miles away. I have an appt., but we would not be able to successfully afford paying cash for her appts. and whatever treatment she recommends. She specializes in Interstim therapy and OMG that has to be expensive if our insurance won't apply to it.

                Also, I notice that you use Oxytrol patch. Is that for IC? And if so, what side effects and success rate have you had with that? Where do you guys get your freeze dried Aloe Vera and how expensive is it? I have heard more than one person say that really works for them.

                Thanks,
                April
                Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                Comment

                • #9
                  Originally posted by curlycue
                  Ladies I take Natrol Ester-C 1000mg I bought it from the IC Store and it does not bother my bladder, I also take Glucosamine,Chonditin,msm from the Natrol brand as well and I am ok.

                  April
                  I am on the rescue instills as well and 400mg of Elmiron and it works. Dont give up I know its hard. I will keep you in my thoughts and prayers.

                  Hey Ruth,

                  Does Natrol-Ester C contain estrogen? I was just wondering because I can't have extra Estrogen because of a pulmonary embolism I had in 2004. Thanks.
                  Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                  Comment

                  • #10
                    vitamins

                    April I dont know if it contains Estrogen, it does not state that it does but it not state it does not!
                    Blessings,
                    Ruth

                    Comment

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