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Instills worked great...until now. Advice PLEASE!!

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  • Instills worked great...until now. Advice PLEASE!!

    Oh the ups and downs of IC. I recently had 8 instills which consisted of marcaine, sodium bicarb, and solu-cortef. There might have been heparin in it, can't remember. Anyway, after about 3 weeks I started feeling great! The closest to normal I have felt in a long time. In addition to this I am on Elmiron, hydroxyzine, and Elavil. I really have been doing well...until a few days ago. I am now having frequency and the old dreaded pressure is back. Before I had the 8 instills, I had been doing my own instills of heparin, bicarb and lidocaine. It was hit or miss with these. ANYWHOOO....I was wondering if I should try my rescue instills here at home again. Do you think I am instilling too much into my bladder? I haven't had the solu-cortef solution in 3 weeks. I can't decide if I should go in for another round of eight at the Drs. office or do my rescue instills here at home. Decisions, decisions. I am watching my diet as well. I had gotten to the point where I could tolerate low acid coffee with Javacid, but would not dare touch it now. I am honestly thinking about a hydrodistention (which I have never had). It just seems like everything I try is only short term. I do, however, believe the Elmiron is helping because I am in a much better place than I was over a year ago. It is just so discouraging when you think you are doing so well and then BAM, here we go again. My remissions are so short lived. But I won't give up!!! Any advice is appreciated. This site helps keep me sane!

  • #2
    Re: Instills worked great...until now. Advice PLEASE!!

    If you feel better when doing frequent instillations, I suggest you talk with your doctor about continuing to do them. I know there are some who actually instill every day --- some more than that.

    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

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    • #3
      Re: Instills worked great...until now. Advice PLEASE!!

      So even with the solu-cortef, I can do on a regular basis? That would be great...go in and get instills as needed. This is one I can't do at home. She uses a larger cath because the consistency is thicker than the rescue. I will resume the instills and keep praying! Thanks Donna...what would we do without you?? How cool would it be to have an IC gathering and meet all our friends on this site?! Of course that would be very expensive ... And we gotta save all our $$$$ for all these dadgum meds we take. 😩

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