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  • Helping or making things worse?

    My doctor has had me doing rescue instillations on a daily basis for several weeks, but haven't noticed any major improvements. How long does it usually take to know if they are working?

    I have also noticed that I have trouble urinating out the instill cocktail. Someone else mentioned in another thread that they have retention afterwards. Is this common? I have to catheterize again to get the meds out.

    Catheterizing so often is become very irritating. My doctor's office said to keep doing the instills, but I am starting to feel very discouraged and almost like they are making things worse. Is there anything I can do to decrease the irritation? And should I be seeing more improvement at this point?

    Thanks!

  • #2
    Re: Helping or making things worse?

    I fight with retention after instills, and usually end up catheterizing to drain out the instill after three or four hours. If I hold it longer than that, or if I don't use a catheter to make sure it all drains out, I end up with retention problems all day. If I do cath, then I do just fine.

    I got relief from the rescue instillations almost immediately. What meds are you using in the instill?

    I have lidocaine jelly to numb my urethra, but I rarely use it anymore. I've been using hydrophilic catheters, which seem pretty good for not causing a lot of irritation, but it hasn't ever been a big problem for me. You could talk to your doctor about using smaller catheters. Early on, I tried some as small as 8 French, but since I don't have much trouble with irritation I wound up going back to the 16 Fr that my doctor started me with.

    I hope you get some relief soon!

    Comment


    • #3
      Re: Helping or making things worse?

      What is in the solution you are instilling? You might want to try a very small catheter or a special one, like Lo-Fric, to see if that helps. There's also the potential for infection when we self instill so I suggest you have your urine checked to rule that out. I hope this works out for you --- self instillation helps many of us.

      Warm hugs,
      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

      Comment


      • #4
        Re: Helping or making things worse?

        Thank you both for your replies. My cocktail is lidocaine, heparin, kenalog, and sodium bicarbonate.

        I don't really have the symptoms of a UTI, just EXTREME sensitivity around the outer area of my urethra and when I use the catheter, so I think it's the catheterization that's causing the problems.

        The rescue instillations are supposed to give relief almost immediately? It's been several weeks and I haven't noticed any change. Numerous oral meds haven't worked for me, either. It's very discouraging.

        Comment


        • #5
          Re: Helping or making things worse?

          Plenty of lubrication is one of the keys to comfortable catherization. You don't mention if you're using lidocaine gel to lubricate the catheter. If you aren't, you should consider talking with your doctor about it. I get it in tubes with a funnel-looking cap; I put the cap on the tube, squeeze a little out to lubricate the cap, then put the funnel end slightly into my urethra (which is why the cap needs to be lubricated) and squeeze the gel in. It burns slightly as it goes in, but within a minute or so it quits burning and numbs my urethra. It can be a little messy, because it will try to squeeze its way back out of my urethra while I'm putting in the catheter and will sometimes leak out after the instillation and make a mess in my underwear, but I can use a small pad for an hour or so after the instillation to keep my clothes clean.

          It makes a big difference. When I started cathing, I used it in my urethra every time. I've reached the point that I rarely need to squirt it into my urethra, but I still use it to lubricate the end of the catheter (if I'm not using a self-lubricating hydrophilic catheter), and if I have any irritation after I remove the catheter I'll squirt some in to numb the area. By the time the numbness wears off, the irritation is usually gone.

          Comment


          • #6
            Re: Helping or making things worse?

            Hi Itapilot! I am definitely using enough lubricant - the nurse that taught me my instills even said I could cut back and use less. I originally started with the lidocaine jelly, but it didn't make a big difference so I switched back to the regular lubricant. I'm wondering if it could be the antiseptic causing the irritation problem? Because it is the outer area that hurts ALL THE TIME like it's raw, not necessarily the actual urethra that's hurting (i.e. it doesn't burn when I pee). What antiseptic cleanser do you use?

            Comment


            • #7
              Re: Helping or making things worse?

              Per my doctor's instructions, I don't use an antiseptic cleaner. My instill cocktail includes gentamicin, which I'm guessing helps to prevent catheter-related UTIs - I have yet to get one, even with no antiseptic cleaner. It's also worth noting that I'm male, so that may reduce the need to clean around the urethra, as well as making me less prone to UTIs in general.

              Comment


              • #8
                Re: Helping or making things worse?

                When you use lubricant, I suggest that you squeeze some lubricant on a piece of waxed paper, then dip the catheter into that --- that way you avoid contaminating the lube in it's container. If you're putting it directly on the skin surface, you might want to use a Q-tip or a well-washed finger to transfer it from the waxed paper to the urethra opening.

                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

                Comment

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