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Support sites for ostomies/urinary diversions?

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  • Support sites for ostomies/urinary diversions?

    Anyone know a good active forum or similar support site for those with ostomies/urinary diversions or Indiana pouches? I've been having some issues with my pouch, and joined an ostomy forum which a doctor recommended (not sure I can give the name here, but it's a big one), but nobody replied to either of my posts (February 25th and March 5th). Lots of other posts seem to go without answers. This forum as well doesn't seem very active, plus I'm not sure how relevant my posts are here (seeing as I technically no longer have IC).

    I could really use some community support somewhere. I can't contact my doctor over every issue, and it hurts going through this all alone.

  • #2
    Re: Support sites for ostomies/urinary diversions?

    Have you tried the Ostomy group on Inspire? https://www.inspire.com/groups/ostomy/

    "When you gotta go, you gotta go!"

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    • #3
      Re: Support sites for ostomies/urinary diversions?

      We do have some people who have had bladders removed --- if you don't find a support group specifically for that, I suggest you try posting your questions here.


      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
        Re: Support sites for ostomies/urinary diversions?

        How are you doing now? Are you pleased with the outcome?
        Health Issues
        IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
        Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
        Symptoms:
        I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

        Failed
        Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

        WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
        Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

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