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at my witt's end

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  • at my witt's end

    I am on every possible drug for IC. 400mg of elmiron. 10mg of elavil 25 mg of hydroxyzine and 1 mg of ativan. My doc did away with the detrol but I remain with the others but im startin to wonder why. Pain is minimal, discomfort is the better word. I feel the pressure to pee almost all day and only feel relief for about 15 minutes after i pee. I would say im going about 30 times a day now and thatsonly waking up once or twice a night which is where the ativan has been a big help. Doc has suggsted interstim but im so lost and frustrated i dont know what to do. I have a wife and 4 young kids and im going with this stuff. HELP

  • #2
    Hey Shaun,
    Why not consider the interstim? 30 times a day and thinking about it almost all the time has to be frustrating and distracting to say the least.
    Maybe there are some people here who have had the interstim and can give their thoughts on success.
    I know they put you on an external interstim trial to see if it works for you before considering the surgery. What if it gave you great relief from the pressure?
    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

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    • #3
      How long have you been on the medications? Are you following an IC diet? Have you tried instillations? Most people, even the interstim successes, will agree it is a last resort treatment.

      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

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      • #4
        Ic

        I totally agree wih donnahugs hope you feel better soon.
        <center>
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        </center>

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        • #5
          one question

          Thanks for the responses but one question. My doc did email me about bladder installations. My concern is, are they only done through catherization? General anesthesia? Because I had a horrible time with the catherization when I had my hydrodistension. (i am a man) and it isnt very pleasant. Anybody know or have been through these installations? Thanks

          Comment


          • #6
            Hi,
            You and I sound very similiar in our discomfort, although I am a woman, I feel as though I have to pee/pressure 24/7 no matter if I go or not. It doesn't make any sense to me. I also have difficulty with stream. I have tried everything, meds, PT, acunpunture, natural remedies, installations, biofeed. I mean everything! I am now on the list for a bladder pacemaker or botox. If I can I'm thinking of trying the botox first and if that doesn't work the pacemaker. It is a last resort but I'm slowly going crazy and losing my life (or at least that's how I feel). I have to try because there is no way I can live the rest of my life like this . . .it's been a year and half and I'm ready to try whatever at this point. Oh I've also tried the diet for a good year and no difference. Sometimes I even wonder what this IC is or if I even have it. It just doesn't seem like the typical symptoms of IC.
            Hope you find relieve and if so let me know what it is.
            Take Car

            Comment


            • #7
              ok

              I have been on a modified IC diet but not totally mostly because many people believe it isnt great help anyway. Donna i have been on the elmiron for a long time but the others for only 6-8 weeks or so. Are the bladder instillations through catherization? StephN i agree i cannot live like this forever I am only 32. I dread those catherzations epecially if it wont help. I hate that stupid feeling like i always have to go and yes Ste PhN i do think we have very similar things goin on, sadly. any info on the instillations would be appreciated

              Comment


              • #8
                The instillations for me were down thru catherzation and I believe that is the way they are all down. I did it weekly for 12 weeks just to be sure and give it a good try. Unfortunately it did nothing for me but you never know until you try it . . .right? This is why I know I have tried it all but nothing has worked. Let me know what you decide.

                Comment


                • #9
                  If you look on the ICN homepage you will find some information about treatments and other things that might help. There are other meds used to treat IC, others than the regimen you are now on. Also, many, many people find a great deal of help by following the diet. Check out the information available on this site as well as at IChelp.org. Maybe you will come across something you haven't tried yet.

                  Good luck, I know how frustrating this can be.
                  Sandra
                  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

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