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  • Bladder instillation Cystistat doing yourself

    Hi all
    Last week I saw my consultant (UK NHS) who I last saw in July last year. I tried 8 months on Elmiron and was willing it to work but it didn't. I was still getting flare ups and had to call it quits. I went back to my GPs (general practitioner in the UK) to say it wasn't working could I got back to having bladder instillation which I had done for 18 months from Dec 2015 to July 2016. The waiting list was about 3 months.

    At this point I was still taking Elmiron but had to come off due to being on prednsiolone (rescue steroids for my asthma) after an asthma attack. The side effect make your white blood cell count drop. So I was refused my prescription for Elmiron by the hospital pharmacy. I was being given it one/two months supply at a time. So I stopped in early November rather abruptly.

    Back to the appointment with my consultant who discuss what I wanted to do next. Did I want to be on Elmiron and have bladder installation. I know that bladder installation are more expensive for the NHS. £100 per treatment (they left the price on once) and Elmiron which is about £149.00 for two months supply. That why I was willing to try Elmiron to one spend less time with hospital appointments. Two the cost to the NHS.

    So I back to bladder installation and I going to have my 6 weekly appointments starting this month. Then after that I have to do myself. The urology department decided that they would do this as other urology department around the country do this. Also they can't offer it as they have a lot of bladder cancer patience and can't fit us in. (I did know this before I decided to go back to them.)So I believe that after the 6 treatments I will be doing it for myself. I think its one treatment every two weeks and then once a month for the next 16 months.

    I still get flare ups and they can be very sore. I don't get frequency but just bladder pain. I am able to sleep at night due to taking amtriplyine (50 mg). I rigidly stick to my IC diet and if I eat something I should have pay the price with pain.

    So what I want to ask is how to you give yourself. ( I am bulletproof I just want to know I have to do)

  • #2
    Re: Bladder instillation Cystistat doing yourself

    First of all, self instillations aren't difficult after the first one or two. Once you develop your own method, it only takes a few minutes. Some will sit in a bathtub, some lay down on a bed or even the floor. When I did them, I assembled all the supplies on a clean wash cloth, then placed a large flashlight on the floor in front of the toilet, pointing up. A mirror on the front of the seat helped me find the urethra. I then put one foot on the side of the toilet seat and positioned myself so I can see what I was doing --- then inserted the catheter (I used a flexible catheter, about a foot long) and allowed my bladder to empty. Then I inserted the tip of the syringe holding the solution into the end of the catheter and slowly pushed the plunger to insert the solution into the bladder. Once the solution was in, I pulled out the catheter with the syringe still in the tip (the first time I did it, I took off the syringe first and the solution drained out through the catheter).

    I used a small picnic thermos and wrapped supplies in a small clean towel to store. Thorough hand washing before and after is essential.

    I know others will let you know how they instill at home --- I suggest you do a bit of play-acting before hand --- that way you will have some idea of what positions are comfortable for you and what feels reasonable.

    Good luck!
    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: Bladder instillation Cystistat doing yourself

      I initially had a hard time with the catheter insertion and thought I'd never get it. A nurse told me to put a tampon slightly in before the catheter and that has helped a ton and it has gotten a lot easier. I personally find it easiest to do it standing over the toilet.
      Current treatments: Botox, Bladder installations, Elmiron, Amitriptyline, Gabapentin, Hydroxyzine, Sprix.

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      • #4
        Re: Bladder instillation Cystistat doing yourself

        Erin, have you managed to get NHS to agree to let you do self instillations and which med are you instilling Elmiron or Cystistat? I asked my NHS urology dept to let me self-instill but was told Cyststat is classed as a medical device and has to be done at the hospital by a nurse.

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        • #5
          Re: Bladder instillation Cystistat doing yourself

          Originally posted by Twiglet21 View Post
          Erin, have you managed to get NHS to agree to let you do self instillations and which med are you instilling Elmiron or Cystistat? I asked my NHS urology dept to let me self-instill but was told Cyststat is classed as a medical device and has to be done at the hospital by a nurse.
          I am in the U.S I don't know if that makes a difference. My nurse told me that a decade or so ago it was much more common for people to do them at home who do installations long term. Now it is harder for patients to find the supplies. My doctor was fine with it as long as I was and I nurse taught me how to do it. I do Elmiron installations.
          Current treatments: Botox, Bladder installations, Elmiron, Amitriptyline, Gabapentin, Hydroxyzine, Sprix.

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          • #6
            Re: Bladder instillation Cystistat doing yourself

            Erin, sorry I meant to respond to the original poster Elanoali. Elanoali, did you manage to get NHS to agree to let you do self instillations at home?

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            • #7
              Re: Bladder instillation Cystistat doing yourself

              Hi all just updating my post as yesterday I had a lesson on how to self catheterize myself. It wasn't rock science as they say and now waiting for the supplies to be delivered for me to do it myself. However that won't be til I had two appointments to show how to do the bladder instillation after doing the catherization.
              The protocol of bladder instillation is as follows. Undress and clean front to back on urinal area, Wash hands to the tune of Happy Birthday. Sit up on bed and then part legs with heels together and knees apart. Part labium majora and then find bladder hole and insert catheter. The catheter is lubricated with a break of the pack it is in. Then hold kidney dish to catch the urine. Bend the top of the catheter to stop to drip when taking it out. Done.

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