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Flare from rescue instills

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  • Flare from rescue instills

    I have been doing twice weekly instills....heprin, lidocaine and sodium bicarbonate....for about 6 weeks now. I have noticed I pee larger volumes sometimes, but haven't had relief for pain which is my main symptom. I have actually been flaring from the instills. I do them at night and seem ok, but after I void them the next morning I flare for 12 to 24 hrs. I don't want to give up completely on them because after 6 yrs I don't really have any options left. But maybe I should try different med in them. My uro is really good about trying about anything I ask. What should I try next?!?!
    Current: -pelvic floor therapy, -weekly uracyst instills

  • #2
    Re: Flare from rescue instills

    Instillations aren't usually held overnight --- have you tried voiding 45 minutes to an hour after instilling the meds? Also, if you're mixing the ingredients, you might talk with your doctor about putting in the lidocaine first, then waiting a few minutes before doing the other ingredients.

    Donna
    Stay safe


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    • #3
      Re: Flare from rescue instills

      I don't know what to do. My dr said at night so it stays in longer....when I was doing them in the office she said a min of 2 hrs or as long as I could...I could normally hold 5 to 6 hrs. But I wasn't getting any different results then from now.
      Current: -pelvic floor therapy, -weekly uracyst instills

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      • #4
        Re: Flare from rescue instills

        It's so hard to know what to do some times. Everyone we talk to has their own opinion/advice so it can get overwhleming. Personally, I am a firm believer that if it hurts then it may not be the right treatment. I try to listen to my body. If you've beenfollowing the same routine for 6 weeks and it still hurts then I would definitely talk to your doctor about making some changes to the intillations. How are you doing with them today?
        • Started with nocturia 10 years ago then slowly progressed into full blown IC about 6 years ago.
        • Officially diagnosed in 2012 after undergoing a cystoscopy.
        • Experience urgency/frequency/burning/pain.
        • Wake up 4-10 times (on average) per night to urinate.
        • Urinate between 20-40 times a day total
        • Tried Elmiron with no success.
        • 10mg Amitryptiline helps occasionally (for sleep) but generally turns me into a zombie.
        • Prelief has little effect.
        • Azo/Uristat as needed, but has little effect.
        • Tried IC friendly diet for one year with no success.
        • Tried Detrol and Vesicare, but only made the pain worse.

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        • #5
          Re: Flare from rescue instills

          I am. I stopped using the sodium bicab and switched to marcaine. I didn't flare from the last 2. But I can't say they help yet.
          Current: -pelvic floor therapy, -weekly uracyst instills

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          • #6
            Re: Flare from rescue instills

            Dr. Dell says if it is painful don't hold it. Follow your MD's advice concerning how long to hold the instill. If your MD wants he can contact Dr. Dell at the Female Pelvic Institute. Dr. Dell has assured me that he is very receptive to discussing treatment of IC with medical professionals.
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

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