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  • Instill questions

    I have an appointment with my uro coming up, and I have a feeling I'm going to be encouraged to start instills. I want to be prepared for this, and have a few questions for you all.

    1) I know there are different medicines they use in instills (like lidocaine, heparin, DMSO). What's the difference between the different cocktails? Do the different types of instills treat different symptoms, or do all instills do the same thing?

    2) What symptoms is an instill supposed to alleviate? Just bladder pain, or frequency too?

    3) What is the difference between a rescue instill and a regular instill?

    4) I've heard sometimes an instill can make you feel worse before you feel better. How long does that last and how/when do you know if an instill is working?

    Thank you!

  • #2
    Re: Instill questions

    1) I know there are different medicines they use in instills (like lidocaine, heparin, DMSO). What's the difference between the different cocktails? Do the different types of instills treat different symptoms, or do all instills do the same thing?

    THE DIFFERENCE IS JUST THAT DIFFERENT MEDICATIONS ARE USED. LIDOCAINE AND MARCAINE ARE ANALGESICS, HEPARIN CAN HELP WITH BLADDER DISCOMFORT.

    2) What symptoms is an instill supposed to alleviate? Just bladder pain, or frequency too?

    SINCE THE FREQUENCY IS CAUSED BY AN IRRITATED BLADDER, INSTILLATIONS CAN HELP WITH BOTH.

    3) What is the difference between a rescue instill and a regular instill?

    A RESCUE INSTILLATION IS JUST THAT --- IT HELPS WITH PAIN AND FREQUENCY --- THAT'S WHY THEY CALL IT A "RESCUE" --- IT HELPS ALLEVIATE THE DISCOMFORT. SOME PEOPLE DO RESCUE ONES ON A REGULAR BASIS.

    4) I've heard sometimes an instill can make you feel worse before you feel better. How long does that last and how/when do you know if an instill is working?

    SOME OF THE MIXTURES INSTILLED CAN CAUSE PAIN AT FIRST --- DMSO CAN BE PAINFUL AT FIRST. YOU WILL KNOW IF IT'S WORKING IF IT HELPS YOU FEEL BETTER. WITH DMSO, IT CAN TAKE SEVERAL TREATMENTS BEFORE IT HELPS.

    My suggestion is to try the rescue ones first.

    Donna
    Stay safe


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    • #3
      Re: Instill questions

      Thank you so much, Donna!! This is very helpful.

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      • #4
        Re: Instill questions

        Donna Rocks! Hopefully you also found our page on Bladder Instillations on our website!

        http://www.ic-network.com/conditions...instillations/

        One note...

        Do NOT let anyone put anything in your bladder without first disclosing what is in it. Some older instillations like Silver Nitrate and Clorpactin are NO LONGER done and are not mentioned as treatments in the AUA Treatment Guidelines for IC. Unfortunately, some older doctors still do these archaic and very painful procedures and, in one case, did an instillation without a patients permission at her very first appointment. So... you've got to be crystal clear that this is YOUR body and you want to know what is being used. You couldn't pay me to have any of those older treatments now.

        Jill
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        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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        • #5
          Re: Instill questions

          I get Uracyst instills, they are building up my bladder lining again. I always used to have blood in urine, after 1,5 years Uracyst every 2 weeks I do not have any more. Very great improvement, but I still have symptoms though less, it is just long way...

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          • #6
            Re: Instill questions

            Thank you for the information, Jill! I am trying to be super vigilant about learning all that I can.

            Ideally, I'd like to talk with my doctor about the type of cocktail, and then schedule my first instill for another day so that I have time to go home and read up on all the meds. I realize that might not be possible, and they might want me to do it same-day, so I'm trying to be prepared.

            It seems like there are so many different combinations that are used. It seems like heparin, lidocaine/Marcaine, steroids, and sodium bicarbonate are the most commonly used in rescue instillations - is that right?

            I don't like the sound of DMSO, and I know silver nitrate is bad. I will read up on clorpactin and add it to my "no" list.

            Are there other really bad ingredients I should know the names of?

            Thank you!!!!

            Originally posted by icnmgrjill View Post
            Donna Rocks! Hopefully you also found our page on Bladder Instillations on our website!

            http://www.ic-network.com/conditions...instillations/

            One note...

            Do NOT let anyone put anything in your bladder without first disclosing what is in it. Some older instillations like Silver Nitrate and Clorpactin are NO LONGER done and are not mentioned as treatments in the AUA Treatment Guidelines for IC. Unfortunately, some older doctors still do these archaic and very painful procedures and, in one case, did an instillation without a patients permission at her very first appointment. So... you've got to be crystal clear that this is YOUR body and you want to know what is being used. You couldn't pay me to have any of those older treatments now.

            Jill

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            • #7
              Re: Instill questions

              Thanks for the reply, Krist! I don't know much about Uracyst. How is it different from a rescue instill?

              Originally posted by krist656 View Post
              I get Uracyst instills, they are building up my bladder lining again. I always used to have blood in urine, after 1,5 years Uracyst every 2 weeks I do not have any more. Very great improvement, but I still have symptoms though less, it is just long way...

              Comment


              • #8
                Re: Instill questions

                It is building up bladder lining again, I think other instills work differently, I never had others.

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                • #9
                  Re: Instill questions

                  I have been doing instills for a little over a month now . Lidocaine, Heparin &Sodium Bicarbonate. With good results, but for over a week now I have been having horrible with bladder spasms. I talked to my Dr. about it last week when I seen him and he changed my Lidocaine to Marcaine. It doesn't help either. I called my Dr back this morning and talked to the. nurse, she said she would talk to the Dr and get back with me...oh well thats been nearly 6 hrs ago. No ph call yet. But I was wondering has anyone else had this problem with instills?

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                  • #10
                    Re: Instill questions

                    I would maybe ask if there are preservatives in the medications they are using. I myself am sensitive to many preservatives. I know way back when I was doing instills I found the one they used in the office irritated me. When I did them on my own I started ordering preservative free lidocaine and heparin. I did a lot better with it and did not get the irritation. My doctor even switched to ordering preservative free medications.

                    I also would make sure you do not have a UTI. Instillations do put one at risk for getting a UTI due to the catheterization process. Hope you feel better soon.









                    Originally posted by dianabritt View Post
                    I have been doing instills for a little over a month now . Lidocaine, Heparin &Sodium Bicarbonate. With good results, but for over a week now I have been having horrible with bladder spasms. I talked to my Dr. about it last week when I seen him and he changed my Lidocaine to Marcaine. It doesn't help either. I called my Dr back this morning and talked to the. nurse, she said she would talk to the Dr and get back with me...oh well thats been nearly 6 hrs ago. No ph call yet. But I was wondering has anyone else had this problem with instills?

                    Comment


                    • #11
                      Re: Instill questions

                      I know what happened to me: I had as well quite bad cramps always after instillations. But it was not the problem of liquid itself! (I use Uracyst). For me, the problem was too bad catheter and catheterizing process. I would ask, which catheter they use, people here say that Floey catheter is the best, and I went to emergency few days ago and that was really really good one, no spasms at all, and she used Lidocaine to make it smoother without problems. And as well, as my uro switched to new catheter, things got much better. But honestly, this one time with Foley catheter was even much much better, though they did not use real local anestheticum as my uro does. I would look for this point before blaiming instill itself, but of course, without preservative is always better as well.

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