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  • rescue instillations for the bladder

    Hi everyone,

    I'm in the middle of a flare that's lasted two months now. Have had IC for 12 years and am usually stable with Elmiron and Amytriptilene and only having a handful of bad flares over the years. This one has been so bad and lasted so long that my urologiste has been doing weekly bladder instillations with lidocaine and herparin. He says most people need to have four to six in a row, once a week before long lasting effects kick in. Tomorrow I will have my fifth and so far I've only been getting relief for about a day or so afterward.

    Has anyone reading this or anyone you know had success with these bladder cocktails helping to end flare ups?? I'm feeling dicouraged and have lost about 10 pounds in the last six weeks or so due to just not eating much. I'm sticking to all ic friendly foods but nothing agrees with my bladder and I'm still having pain.

    Would really appreciate any feedback as to what you did to get your flare up under control or if you've had bladder instillations with any success or any other treatment.

    Thanks!

  • #2
    I do bladder instills also but I do mine at home daily and do find I get a lot of relief from them. I don't get more than about 8 or 9 hours of relief from them. I use elmiron and marcaine. If you are getting short term relief maybe you can ask if you can do them from home as well. Many ICer's do. I find that when I am in a flare that doing daily instills is what calms my bladder the most. I can feel less irritation each day.

    Be sure you are drinking plenty of water, getting dehydrated isn't a good thing at all. Go ahead and eat from the OK list of the diet, you need the strength to get better from the flare. Stress can also contribute to a flare and make it worse, maybe a relaxation CD would be of help.

    Wishing you good days ahead,
    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      Hello, I've just been diagnosed with IC I am on Visicare and weely instill that have helped me alot, I know we're all different in the treatment that works best for us. I had a lil nagging ache this week end and tried Tiger balm pain patches (over the counter) I was shocked that they helped me.....it's worth a try. Hope you find relief soon.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily

      Comment


      • #4
        Thanks so much for responding. It's worth trying the Tiger Balm because I have nothing to lose. The pain is just so uncomfortable and disabling right now and nothing is helping. The first bladder instillation I had actually gave me relief for about five days before it wore off. That was around mid February and for whatever reason, all the others have only giving a day or so reprieve from the pain. I hope you continue to improve and do as well as I have for most of the 12 years since my diagnosis. Thanks again for the tip and for your good wishes!

        Comment


        • #5
          Thanks, Sandra, for your feedback, as well. It's a lonely feeling when you're stuck in so much pain for all these weeks and begin to worry that it's never going away. And when someone gives feedback and encouragement it gives me a big lift.

          Unfortunately, my urologist will not let his patients do home instills. I've asked about it and he's just not comfortable with doing that with his patients. He says it's due to possible injuries or infections so just won't go there. I may have to see someone else if I don't improve soon. I have two more weekly instillations and then I will have six in a row. He continues to encourage me to follow through with that because he says the vast majority of patients see great improvement by that time.

          As you suggested, I know I should be eating better but nothing works as far as my bladder never calming down. I guess I'll go ahead and keep eating foods from the list even though my bladder continues to scream. At least I'll stop losing weight and will maybe have the energy to fight this off.

          Also, what is marcaine? I haven't heard of that. I've been on Elmiron, Amytriptilene and the Oxytrol patch for 12 years now and I've been stable most of that time until the last two months. Maybe I need to talk to the doctor about adding or changing to other medications to see if that will make a difference. Thanks again for your feedback.

          Comment


          • #6
            Marcaine is a surface analgesic that is sometimes instilled into the bladder in instillations. It's similar in action to lidocaine, but for me lasts longer than lidocaine.

            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


            • #7
              I'm the same as you ... I didn't think the heparin/lidocaine/sodium bicarbonate instillations were helping, and they seemed to coincide with my pain going up. I stopped them but still wrestle whether I should have stuck with it for a month, as urol. had said effect could take a month.

              I am still confused why it didn't have effect on me -- if lidocaine numbs/freezes the bladder, why did I not have a decrease in sensation? Doesn't seem to make sense, & makes me wonder where the heck my pain is really coming from.

              I did find this summary about studies on bladder instillations, and it seems to show that the evidence doesn't really support them working. That was a bit of a relief, for me, to read - that it isn't just me. That said, a number of people in here & that I've met, have found definite relief from the rescue instillations - so I'm not here to diss them.

              I still continue the Uracyst instillations. It has been weekly and will now shift to monthly. People comment on how expensive they are and it's true, but they cost about the same per year as the Elmiron. So I'm going with the Uracyst instead.
              ______
              Severe IC developed fairly quickly, autumn 2010.
              So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

              - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
              - Methadone 9 ml/day
              - Instillations:
              - 40ml Kenalog (steroid for inflammation) 2 x per
              week, along with rescue cocktail of heparin,
              lidocaine, sodium bicarbonate
              - 20ml Uracyst, monthly @ $100/per
              - Depo lupron injections for endometriosis, monthly @ $88/per

              Comment


              • #8
                I find the marcaine works much better than lidocaine as well. I don't have to use the sodium bi carb with it either and it caused me a lot of burning.

                Sandra
                Link to the patient information, everything from What is IC? to Disability
                http://www.ic-network.com/patientlinks.html

                American Urological Association Clinical Guideline
                Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                Comment


                • #9
                  The rescues have helped me, but not at first. At the beginning of the treatment cycle I find that my symptoms actually worsen. Then about 2 weeks or so after the treatments are completed, my bladder starts to calm down and I experience some relief. This is an annual thing for me and I'm about to start my treatments. Generally I have 2x/week for 3 weeks, however, I always get a UTI around the 4th treatment. This year, I may try 1x/week for 6 weeks and see if that helps avoid an infection. Hang in there.
                  Linda

                  Comment


                  • #10
                    Instill are totally effect in treating IC for me. I am not on a schedule of "times per week". At first I had to do them every day but over time that tapered off. During allergy season I have to do them sometimes every day but the rest of the year maybe once every 1-3 weeks. I don't keep up with how often I do them..when I need one I do it.
                    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                    I post to encourage and offer total support for rescue instillations.
                    Find me on facebook: L. Clark Thomas
                    Louann

                    Comment


                    • #11
                      Originally posted by playethic View Post
                      I'm the same as you ... I didn't think the heparin/lidocaine/sodium bicarbonate instillations were helping, and they seemed to coincide with my pain going up. I stopped them but still wrestle whether I should have stuck with it for a month, as urol. had said effect could take a month.

                      I am still confused why it didn't have effect on me -- if lidocaine numbs/freezes the bladder, why did I not have a decrease in sensation? Doesn't seem to make sense, & makes me wonder where the heck my pain is really coming from.

                      I did find this summary about studies on bladder instillations, and it seems to show that the evidence doesn't really support them working. That was a bit of a relief, for me, to read - that it isn't just me. That said, a number of people in here & that I've met, have found definite relief from the rescue instillations - so I'm not here to diss them.

                      I still continue the Uracyst instillations. It has been weekly and will now shift to monthly. People comment on how expensive they are and it's true, but they cost about the same per year as the Elmiron. So I'm going with the Uracyst instead.
                      I also questioned the relief from the instillations so I quit them after 4 wks.
                      Crystal

                      Diagnosed 2/2011
                      30 years old

                      Current Treatment:
                      Elmiron
                      Antihistamine
                      Quercetin
                      Aloe Leaf
                      N-Acetyl Glucosamine
                      Pribiotic
                      Yoga
                      Meditation
                      Leap Diet (based on MRT food sensitivity test)
                      IC Diet
                      Prayer!

                      Planning to try:
                      Colostrum

                      Comment


                      • #12
                        About Time!

                        After 2 months of flaring horribly, I am now seeing some relief from the bladder instills. I have actually had some days here and there with no pain or minimal pain.

                        New question...

                        I frequently have constipation but have had it really, really bad since doing instills. I think the lidocaine may be the culprit. Anyone else having this???
                        I'm Perfectly Imperfect and Praying for Remission

                        Comment


                        • #13
                          Originally posted by Flowerchild View Post
                          After 2 months of flaring horribly, I am now seeing some relief from the bladder instills. I have actually had some days here and there with no pain or minimal pain.

                          New question...

                          I frequently have constipation but have had it really, really bad since doing instills. I think the lidocaine may be the culprit. Anyone else having this???
                          How long have you been doing the instills and what kind? The heprin kind or DMSO?
                          Crystal

                          Diagnosed 2/2011
                          30 years old

                          Current Treatment:
                          Elmiron
                          Antihistamine
                          Quercetin
                          Aloe Leaf
                          N-Acetyl Glucosamine
                          Pribiotic
                          Yoga
                          Meditation
                          Leap Diet (based on MRT food sensitivity test)
                          IC Diet
                          Prayer!

                          Planning to try:
                          Colostrum

                          Comment


                          • #14
                            Flowerchild,

                            I have never had any problems with lidocaine causing constipation. Are you thinking this because it numbs the muscles? It should only affect your bladder. What else are you taking for your IC? Are you eating differently? Drinking enough?

                            Not sure if the DMSO instills would cause that as I have never had them.

                            I find miralax helps me. Sometimes just the lack of movement from being in pain can cause some problems as well.

                            Sandra
                            Link to the patient information, everything from What is IC? to Disability
                            http://www.ic-network.com/patientlinks.html

                            American Urological Association Clinical Guideline
                            Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                            http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                            Comment


                            • #15
                              Instill Medications and Insurance

                              Has anyone had trouble with insurance companies covering the cost of the meds needed for the instills?
                              Linda

                              Comment

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