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How long did it take your symptoms to improve with rescue instillations?

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  • How long did it take your symptoms to improve with rescue instillations?

    Hi,

    I'm a little bit confused on the length of time that is standard or "normal" for a reduction in symptoms to be noticeable with rescue installations? I had my 13th installation today of heparin, sodium bicarbonate, Marcaine and Kenalog. I have not noticed as much improvement as I was hoping for, after two months of treatment. If anything, in the past couple of weeks, I have begun to feel worse. At first, my Urogynecologist Office told me that I would need six treatments, once a week, and I should be feeling better. But, after about 4 to 6 treatments, they said that is not the case for most patients, but that most do notice an improvement after 4 to 6 treatments. They are telling me that if I don't feel better by now, then that they probably aren't going to work for me. 😩😞

    however, I read on the IC network, that daily treatment for three months is recommended, and then 3 to 4 times a week after that, but that improvement would not be noticeable for at least three months, but should continue for up to 12 months, and could be continued indefinitely.

    If you did this instill, when did you begin to feel better?

    It is my understanding that the heparin works by building up a coating on the bladder, therefore allowing the bladder to heal. So I'm thinking that I should give it a little bit longer, according to the IC network? But, I'm kind of ready to give up, because I've had symptoms of urgency and frequency come back, that I didn't have four more than a month. I'm thinking that my urethra is irritated.

    I would love to hear others' experiences with this installation. Thanks in advance!

  • #2
    Re: How long did it take your symptoms to improve with rescue instillations?

    It took 8 months before I started getting any help from the heparin/lidocaine instill which I had done once a week. My Uro told me it could take that long and I was ready to call it quits. I had my eruthra streatched twice so he could get the catheter in a little bit easier because the pain from the cathater was way to much for me. I tried the sodium bicarbonate along with the heparin twice and it just killed my bladder. I was in so much pain from it. My bladder was happy with just the heparin. My Uro told me it doesn't really heal the bladder. The way I look at it doing the instill is like putting a Band-Aid on. It's just a temporary help. Sometimes the installation doesn't even help and there are times when it makes it worse. Think the bladder has a mind all of its own really. Life with an IC bladder is a gamble. You don't really know what to do or what will help without taking a gamble. Now if there was just a pot of money to win when you get lucky with taking a gamble I would be thrilled.

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    • #3
      Re: How long did it take your symptoms to improve with rescue instillations?

      This is really depressing news. I certainly hope it didn't cause further damage. I never read anything bad about this cocktail, or I wouldn't have done it. I read that it was soothing. I am unsure if my pain is my urethra that is aggravated from having a catheter put in 13 times in two months, or if it's my bladder that hurts.it feels like both. And I do not understand why it would cause my bladder to hurt. Which medication would because my bladder to hurt? Certainly not the marcaine. The kenalog is an anti inflammatory, so I wouldn't think it's that. So that leaves the heparin and the sodium bicarbonate. It didn't bother my bladder in the beginning, so I don't understand why it would be a problem now. Maybe I held it too long? She said up to two hours was fine. All I know for sure right now is, I'm definitely not doing another one for a while. I'm just going to try to leave my bladder alone again and see if it improves. I would still like to hear from others

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      • #4
        Re: How long did it take your symptoms to improve with rescue instillations?

        I have got Gepan instillations 2,5 years and no real improvement, but I continue, because without them bladder can start shrinking. But yes, they never heal, just band-aid.

        Comment


        • #5
          Re: How long did it take your symptoms to improve with rescue instillations?

          Originally posted by krist656 View Post
          I have got Gepan instillations 2,5 years and no real improvement, but I continue, because without them bladder can start shrinking. But yes, they never heal, just band-aid.
          This is more depressing news. I refuse to believe that my bladder cannot heal. I have so much food I cannot eat, even many bladder friendly foods. There is no way that I'm 34 and never going to eat all these foods again without pain. That's insane. I don't even know why this happened to me. It started one day without an infection, and I still have yet to have an infection, in 4 1/2 months. Why wouldn't my bladder heal? People's bodies heal all the time. I just want someone to post something positive.

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          • #6
            Re: How long did it take your symptoms to improve with rescue instillations?

            Bladder is only organ that can not heal. I guess it is because new burning acid is running in it every second and that does not let bladder lining to heal.
            German forum view is, that IC diet is too strict and unneccessary, and it is true. Stopping eating all this food DOES NOT help your bladder lining. Zero! It is very imoprtant to keep pain away, yes, but following diet will not heal you, only instillations, and ONLY they can help. Plus Elmiron. Maybe.
            The truth is, I can eat almost everything. I never kept real diet, I did not notice much improvement. But I have found all foods that hurt me: coffee, black tea, strawberries, joghurt, strong spices, banana (but I still eat banana for calcium and ignore bladder cramps) and some more. So, honestly, you just need to try. How strict you have been until now?... Does it help?
            Honestly, if Uracyst intillations (Gepan or Ialuril or Uropol or however called your country) are the best ones. They are much better than any other, only problem, not available in USA. If possible, switch to them!
            But yes, I know many stories of bladder shrinking, esp without treatment, so please take instillations seriously, and for whole life. After you stop, it immediately starts losing its effect.
            Only positive stories come usually from Elmiron eaters, and as soon as they stop it, it gets worse again. But instillations have helped many as well.

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            • #7
              Re: How long did it take your symptoms to improve with rescue instillations?

              Originally posted by krist656 View Post
              Bladder is only organ that can not heal. I guess it is because new burning acid is running in it every second and that does not let bladder lining to heal.
              German forum view is, that IC diet is too strict and unneccessary, and it is true. Stopping eating all this food DOES NOT help your bladder lining. Zero! It is very imoprtant to keep pain away, yes, but following diet will not heal you, only instillations, and ONLY they can help. Plus Elmiron. Maybe.
              The truth is, I can eat almost everything. I never kept real diet, I did not notice much improvement. But I have found all foods that hurt me: coffee, black tea, strawberries, joghurt, strong spices, banana (but I still eat banana for calcium and ignore bladder cramps) and some more. So, honestly, you just need to try. How strict you have been until now?... Does it help?
              Honestly, if Uracyst intillations (Gepan or Ialuril or Uropol or however called your country) are the best ones. They are much better than any other, only problem, not available in USA. If possible, switch to them!
              But yes, I know many stories of bladder shrinking, esp without treatment, so please take instillations seriously, and for whole life. After you stop, it immediately starts losing its effect.
              Only positive stories come usually from Elmiron eaters, and as soon as they stop it, it gets worse again. But instillations have helped many as well.
              Well, I live in the US, so I guess I'm out of luck.

              I can't eat many of the bladder friendly foods. I seem to be more sensitive than most. Corn products, oats, sugar, salt, most nuts except almonds, oregano, Rosemary, thyme...this list is too long to think of all of it here. abd it's not very consistent. I couldn't eat oatmeal or oat cereals, but I can eat cereal bars with oats? I don't get it. Too much sugar or salt does me in. So I reduce the amount in recipe by at least half. I haven't tried any of the foods on the "avoid them" list. Most on the "try it" list haven't worked out, like bananas.

              Instills were not helping and I think my urethra had enough. I don't believe NOT doing them will cause damage. I also don't believe my bladder CAN'T heal. I DO believe in the power of the mind to heal our bodies, but we have to eat right also. I think I have to not anger my bladder for a long time, and it will heal. I'm going to get tested for food intolerances next, I guess.

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              • #8
                Re: How long did it take your symptoms to improve with rescue instillations?

                Bladder instillation do not work for everyone. Sometimes they can actually make matter worse( cause nasty UTI's and bacteria to colonize in the bladder). I did instillations years ago and they caused me nasty UTI's. Whenever you have anything inserted into the urethra there is a high risk of getting a Urinary tract infection. This is for the general population and even more so for people who have damaged bladders due to IC.

                There is no single treatment that can get rid of IC because it is not just about the bladder. IC is a whole body issue( an immune system dysfunction) just that the bladder is taking the brunt of it. Most people who have IC have other underlying issues as well going on.

                I would see if you can get in to see a functional practitioner. They tend to look at things as a whole instead of focusing on just symptoms.

                I do not think bladder iinstillations heal the bladder. It may help calm inflammation and symptoms for some people( not all) but I do not think they do any real long term healing.

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                • #9
                  Re: How long did it take your symptoms to improve with rescue instillations?

                  Exactly, instills are like band-aid, as I said. I never got UTI yet from them, but as said, if you stop them, they will be gone agains, just like Elmiron. If you stop, IC will be back.

                  Thinking that positive thinking will help, is nice idea, but bladder will still not heal. There is not one person, who is totally healed. Some have remission, but usually after some months or years it will be back, you find many such stories in forum.
                  And do not spend too much money to herbal, chinese and so on treatments. They just want your money, but will not heal you. Not single case I have read that person got better, mostly they just go bancrupsy from all such so called healers.

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                  • #10
                    Re: How long did it take your symptoms to improve with rescue instillations?

                    I have been having Cystistat instillations on UK NHS since mid January and this started working after the 5th instillation. In UK they give you an initial 6 instillations weekly followed by 1 per month. I am due my 9th instill this week and the past month has been much better with very little pain and the frequency/ urgency has reduced so much i have been able to stop taking Detrol too. I do find after each instill the pain goes up for a few days then recedes, not sure if this is just the catheter irritating my bladder when inserted. The bladder pain doesn't go away completely but is much less then before and tends to go away more quickly. I get a flare every 3 weeks or so and these have also reduced in intensity. I don't think my bladder will ever heal but my IC is a great deal more manageable with the Cystistat treatment. Overall very pleased with the result and will continue for as long as it works.as it works.

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                    • #11
                      Re: How long did it take your symptoms to improve with rescue instillations?

                      I have 1-3 days irritation after Gepan as well, I guess it is from catheter, but also while it irritates bladder as well.

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                      • #12
                        Re: How long did it take your symptoms to improve with rescue instillations?

                        Originally posted by krist656 View Post
                        Exactly, instills are like band-aid, as I said. I never got UTI yet from them, but as said, if you stop them, they will be gone agains, just like Elmiron. If you stop, IC will be back.

                        Thinking that positive thinking will help, is nice idea, but bladder will still not heal. There is not one person, who is totally healed. Some have remission, but usually after some months or years it will be back, you find many such stories in forum.
                        And do not spend too much money to herbal, chinese and so on treatments. They just want your money, but will not heal you. Not single case I have read that person got better, mostly they just go bancrupsy from all such so called healers.
                        I disagree with this from beginning to end. I think I just did too many instills in a short amount of time (13 in two months) and my bladder was aggravated from the frequent catheterization. It has been a little over a week, and I have already seen a big improvement in the past three days. I know within myself that I am capable of healing. I've only come to that realization recently, but I know it to be true. I read this article on Saturday, and it struck a chord. Ever since I have changed my way of thinking, followed my gut and backed off instills, increased my elavil, and began a meditation program, my pain has been greatly reduced. I'm only at the beginning of this journey to healing, but I refuse to believe that I am incapable of healing. For anyone else out there feeling hopeless, read this. I hope it registers deep within your soul like it did for me.

                        https://thehappybladder.wordpress.co...der-condition/

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                        • #13
                          Re: How long did it take your symptoms to improve with rescue instillations?

                          Originally posted by krist656 View Post
                          I have 1-3 days irritation after Gepan as well, I guess it is from catheter, but also while it irritates bladder as well.
                          I had the same issues from the catheter so often. I thought I wasn't healing, but I am beginning to feel improvement now, at about a week and a half out.

                          Comment


                          • #14
                            Re: How long did it take your symptoms to improve with rescue instillations?

                            Originally posted by Twiglet21 View Post
                            I have been having Cystistat instillations on UK NHS since mid January and this started working after the 5th instillation. In UK they give you an initial 6 instillations weekly followed by 1 per month. I am due my 9th instill this week and the past month has been much better with very little pain and the frequency/ urgency has reduced so much i have been able to stop taking Detrol too. I do find after each instill the pain goes up for a few days then recedes, not sure if this is just the catheter irritating my bladder when inserted. The bladder pain doesn't go away completely but is much less then before and tends to go away more quickly. I get a flare every 3 weeks or so and these have also reduced in intensity. I don't think my bladder will ever heal but my IC is a great deal more manageable with the Cystistat treatment. Overall very pleased with the result and will continue for as long as it works.as it works.
                            Glad to hear you are pleased with your progress. Thank you for taking the time to reply to my post. I agree that the catheter can be irritating to the bladder and can make it feel as if there has been no progress.

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                            • #15
                              Re: How long did it take your symptoms to improve with rescue instillations?

                              There are many ways to look at whether or not an IC bladder can heal. I firmly believe it can --- but I also believe that if I subject my bladder to the same irritation that brought on my IC to begin with --- then I'm back to square one in the healing process. It's kind of like my diabetes --- as long as I stick with my diabetes diet and take my medications for it, I do very well and my blood tests are within normal ranges. However, if I were to pig out on sugars, I would be back to where I was when diagnosed. The same is true with my allergies. My primary allergies are to medications, but I'm also allergic to tomatoes in any form. As long as I avoid my allergens, I don't have a rash.

                              I think it's somewhat the same with IC. As long as I stick with my treatment program and stick with my IC diet, I don't have irritation --- but that doesn't mean I can go back to diet sodas, multiple cups of coffee daily, etc. Has my bladder healed? That's a good question and I don't have the answer.

                              I think what helps me most is to look at the positives. I try to look at the things I enjoy that I CAN have --- and there are a lot of them.

                              Sending warm healing thoughts,
                              Donna
                              Stay safe


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