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  • #1

    New to IC what remedy should I try?

    Hello I was diagnosed w IC a few weeks ago after 20 years if bad bladder infections. I hear lots of remedies talked about and am wondering who has had success w what? I have changed diet to cut wheat, alcohol, citrus, sugar, caffeine, soda and chocolate.

    Does anyone know about the aloe leaf capsules from dessert harvest? Does anyone know about DMSO bladder wash vs heprin sodium bicarbonate bladder wash? What works best to make the pain go away???
    Crystal

    Diagnosed 2/2011
    30 years old

    Current Treatment:
    Elmiron
    Antihistamine
    Quercetin
    Aloe Leaf
    N-Acetyl Glucosamine
    Pribiotic
    Yoga
    Meditation
    Leap Diet (based on MRT food sensitivity test)
    IC Diet
    Prayer!

    Planning to try:
    Colostrum
    Tags: None
  • #2
    Hi and welcome to the ICN! What has your Dr suggested to you for treatment. It is good that you are modifying your diet. Have you looked into the IC diet on this site? It can be very helpful in letting you know what food might give you trouble. Are you taking any meds right now for your IC? We do have some sections on the forum dedicated to instills and other treatments. It is sometimes helpful to look thru some of the previous posts from others to get an idea of their experience with different treatments.

    Once again, welcome. I don't have experience with the aloe or DMSO so I won't attempt to answer those. I do have experience with heparin instills and find that they can be very helpful in calming my bladder.
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment

    • #3
      Hi,

      Hi, welcome to the board!
      I haven't had instillations yet am putting those off until I've exhausted the oral medicine route. Medicines alot of ICers start on are low dose tri-cyclics like elavil, antihistamine like atarax and elmiron, helps re-build the bladder lining. Did you see a uro? were you started on any meds?

      I do take the desert harvest aloe and have been taking it now for about 9 months to a year. I "think" it helps. Sometimes its hard to tell. When I first started taking it I really thought it helped but lately not so sure though starting the diet (see my link below) has helped. Aloe is an anti-inflammatory so I figure its good for me no matter what. I will keep taking it for now. I also take cystoprotek which is supposed to help rebuild the bladder lining in a different way then elmiron.
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment

      • #4
        Hello.

        Welcome. Starting with the elimination diet is the very first step, then introduce things SLOWLEY. There is a ton of information on this site to guide you. What works for one person is necessarily going to work for you.
        We can only tell you what worked for US. It is a lot of baby steps.
        Ask a lot of questions and be your own advocate.

        I wish you well, and I am so very sorry that it took so long for you to get DX'D.

        Hugs,
        Minds are like parachutes-they ony function when they are open.
        -Thomas DeWar-


        ICN Newbie Volunteer


        *ICN Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment

        • #5
          to the IC Network. I'm glad you found us.

          I think the diet is a good starting point, along with what your physician is recommending for you --- we can be so different that it's difficult to recommend a specific treatment option.

          The link to the latest diet list is in my signature below.

          Warm 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

          • #6
            Thank u for ur posts. Dr has me doing the non DMSO instillation. I've done it 2 times and it hurts like heck!! But I will give it 2 more tries bcs I'm not sure if it's working yet. The aloe I believe is helping but it is still too soon so I will stick with that at least another month. Since we have to take 6 caps per day i dump the aloe powder into water so my body doesn't have process the capsule. I am thinking of adding cystaprotek too since many of u speak highly of it.

            Has anyone had results with acupuncture?

            Is milk or dairy bad for us?

            Is there a good resource for finding an IC specialist?

            Thank you again for reaching out it means alot.
            Crystal

            Diagnosed 2/2011
            30 years old

            Current Treatment:
            Elmiron
            Antihistamine
            Quercetin
            Aloe Leaf
            N-Acetyl Glucosamine
            Pribiotic
            Yoga
            Meditation
            Leap Diet (based on MRT food sensitivity test)
            IC Diet
            Prayer!

            Planning to try:
            Colostrum

            Comment

            • #7
              [QUOTE=Crystal30;571169]Thank u for ur posts. Dr has me doing the non DMSO instillation. I've done it 2 times and it hurts like heck!! But I will give it 2 more tries bcs I'm not sure if it's working yet. The aloe I believe is helping but it is still too soon so I will stick with that at least another month. Since we have to take 6 caps per day i dump the aloe powder into water so my body doesn't have process the capsule. I am thinking of adding cystaprotek too since many of u speak highly of it.

              Has anyone had results with acupuncture?

              Is milk or dairy bad for us?
              Take a look at the diet, milk and "most" dairy should be fine. I have to say yogurt is in the "try it" list but unfortunately it bothers me. Milk and milkshakes should be good and soothing. Most cheese is fine but avoid aged cheese

              Is there a good resource for finding an IC specialist?
              There is a link here you can search for by your state

              Also, did your doctor start you on any meds? elmiron, elavil, atarax? Ask your doc if they want to recommend starting you on any of those which are all helpful.
              Cindi


              Gelnique for frequency/urgency - works great
              Macrobid after sex
              Prilosec, continuous birth control pills
              synthroid .088mg, mucinex-d, restasis

              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
              Great treatment flowchart on page 19 of the pdf

              Comment

              • #8
                Read the "success" stories - why re-invent the wheel?

                See what helped other people as we all have similar symptoms.

                Comment

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