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Help!!! First Instill Friday!!

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  • #1

    Help!!! First Instill Friday!!

    Hi all, I am having instills every Friday for the next five weeks. I am really scared and have so many questions. I picked up the heparin and kenalog to bring with me for the instills. Has anyone went into remission from instills? Do they hurt or cause a flare after the instill? I don't want to waste all this money if it is only going to help for a week or so and then the pain returns. Any success stories would be great and encouraging Thanks!!!!!!
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  • #2
    Re: Help!!! First Instill Friday!!

    Some people are helped a lot --- and some people do instillations regularly. Will you be learning to do them at home?

    If you can manage to relax, it can help a lot --- and I suggest you ask about having lidocaine or Marcaine instilled a few minutes before the mixture.

    Donna
    Stay safe


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    • #3
      Re: Help!!! First Instill Friday!!

      Thanks Donna for your reply Can you tell me the longest the instills helped you after a round of them?

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      • #4
        Re: Help!!! First Instill Friday!!

        Instills are not something to be afraid of. My first few were uncomfortable (not painful, but not pleasant either) because of the catheter, but after three or so I got used to it. Relaxing helps - when the catheter goes in it can feel like you're peeing, so your instinct is to clench the sphincter, but if you breathe deeply and focus on relaxing the sphincter it lets the catheter pass more easily.

        If anything hurts, let your doctor know. They should numb your urethra with lidocaine, which helps a lot. If the solution is uncomfortable, let them know - they have various meds available to help with that.

        My series of instillations last summer got me through a couple of months until I had a hydrodistention. That kept me going until February, when I had another flare. I've been doing instillations at home, but the flare is bad enough that they're not working as well as the last few times, so I'm going in tomorrow for another hydrodistention. There really is no cut and dried answer to how long they'll help you, but you may well find that they're a fantastic tool to help manage your IC. They certainly are for me.

        Good luck on Friday! Know that you're in the thoughts and prayers of many here. I hope the instills help you as much as they help me!

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        • #5
          Re: Help!!! First Instill Friday!!

          Good luck and hope they go well. X

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