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  • #16
    Again, ASK YOUR DOCTOR before changing the amounts of medicine in your instillation- it is dangerous for all the reasons I and other people gave you before! Again, the wrong balance of bupivacaine and sodium bicarbonate can cause serious damage to your heart. If the balance is wrong, the medicine crosses the cells of the bladder & goes systemic -- out into the body. Either decide to call her or wait until the office is open.

    My doctor's office said to not use alcohol to clean my syringes, I don't know from here if yours are different from mine, so again, ask your doctor. If you're not sure, use a new one for now, until you can talk with your doctor.

    Air coming out of the urethra when you void after an instillation usually just means you put a little air into the bladder with the instillation. It just happens sometimes. No problem.

    Call your doctor or wait, Monday is just a half day away.
    Last edited by kadi; 02-07-2010, 11:33 AM.
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #17
      For Maxeene

      Do NOT change dosages without first talking with your doctor.

      Do NOT clean syringes and catheters with alcohol.


      Please use a new catheter and syringe and call your doctor. If your doctor isn't in today, you will probably get an answering service --- and the doctor on call should call you back.

      I can't emphasize strongly enough that you need to talk with your physician before changing anything about your instillations. There is nobody on these forums who is qualified to answer answer questions about dosages of medications.




      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.

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      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


      • #18
        All of this information and the entire discussion is awesome!!! I didn't get very good directions from my doc's off (military hospital) and darned if I didn't get an infection. The did tell me to wash the cath in warm, soapy water (antibactieral) but that's about it. I went off on my own about self cleaning. I'm pretty sure I was careless (or stupid!!) and caused the uti myself. I feel much better prepared for the next time, thanks to this discussion.
        I'm on cipro now and have stopped all instills. After 6 days I'm supposed to start again trying 2 times a day. They are still so painful I roll up in a ball for about an hour afterwords so will end up going to work late for a while. I'm thinking there is something in her that my body just doesn't like (cytotec, lidocain, elmaron). I'll give it another try though.

        I am taking good notes and starting a load of wash for towles and washclothes with some clorox. Thanks You!!!!!!!!!
        Jan

        Comment


        • #19
          Just call your MD and ask how he/she wants you to clean your supplies and how many times you should use the syringe, needles, and catheter. The instills contain different meds and changing the amount of ingredients could cause problems...I don't think you should change anything with the instill without your MD giving you the OK.
          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


          • #20
            I am removing the sodium bicarbonate - but only after speaking with my doctor. We're keeping the lidocain, elmiron, and cotytec, and in the same amounts. After talking with the doc I also tried 1/2 sodium bicarb tab but it is less painful w/o it, so that's what I'll start with. Thanks!!
            Jan

            Comment


            • #21
              Efficacy of Instills

              Hello all,

              When I first did instills, they worked great. Then, it seemed like my body built up a tolerance to them! So, I gave the nurse at Dr. Parsons' office a call... and she asked me how much water I was drinking per day. I tend to drink at least 6-8 glasses a day. She said that my body most likely is too hydrated for the instills to become properly absorbed. She suggested that I do an instill when I am most dehydrated, and then watch my fluid intake the rest of the day. I tried an instill the other day and I did notice it seemed to work a little better, because I was more dehydrated.

              Has anyone else had a similar experience or been told the same thing by their doctors' office? I am just trying to get these instills to work if I'm going to go through all the hassle of doing them, ya know?

              Additionally, do you feel that the instill loses its effect after you urinate it out? I do. I even hold it for a long time too, at least 2 hours.

              Thanks,

              Jessica
              AthenasMommy
              I'm a 30 year old wife and mother of one wonderful little sweetie named Athena

              I used to have endometriosis and Asherman's Syndrome (also developed after giving birth) but my surgeon was awesome and he removed it all! ***UPDATE*** I have finally been correctly diagnosed. I do not have IC. I have Pudendal Nerve Entrapment. I will be having the Pudendal Nerve Decompression Surgery in Phoenix, AZ as soon as possible.

              Current meds
              Elavil 10 mg QD
              Prozac 20 mg QD
              Neurontin 300mg BID
              Vaginal Valium Suppositories 10mg QD
              *No longer doing rescue instills... they don't work for me*





              Do not lose hope; be your own advocate and LISTEN to what you know to be TRUTH in your heart.

              Comment


              • #22
                I usually do my instills at night so the hydration issue makes sense to me. According to Dr. Dell you should hold the instill as long as it is comfortable. 20 minutes is about how long he wants people to try and hold it so you get benefit from the instillation. I guess what I am trying to say is if you can hold the instill for 20 minutes I don't think it matter when you urinate.
                Last edited by L. Thomas; 02-11-2010, 03:18 PM.
                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


                • #23
                  Jessica,
                  I have similiar results with instils. As I hold it in I feel pretty good. When I void it out my pain returns. Although, sometimes I can hold in for about 5 hours.
                  Teresa

                  We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                  Comment


                  • #24
                    instills

                    I do them at 10pm as well and then go to sleep get up around 1pm and the marathon begins getting up at 1,2,4,5.7. fun and thats a good night. Good luck.
                    Blessings,
                    Ruth

                    Comment


                    • #25
                      lidocaine/catheters

                      Originally posted by Jan S. View Post
                      I am removing the sodium bicarbonate - but only after speaking with my doctor. We're keeping the lidocain, elmiron, and cotytec, and in the same amounts. After talking with the doc I also tried 1/2 sodium bicarb tab but it is less painful w/o it, so that's what I'll start with. Thanks!!

                      How are you handling the lidocaine? My doctor wanted me to add some with my installations (20 cc Sensorcaine, 3cc Heparin, 1cc Kenalog, 1 Elmiron pill) because he said it would help make the effect last longer. But the burning was so intense, I couldn't handle it, so I stopped adding it. He prescribed "viscous lidocaine" and I don't remember how much it was, but it was so thick, and there was no puncture thing at the top, it was nearly impossible to draw it into the needle. I managed to get some in, but it took forever because it was so thick.

                      About the original question about sterilizing catheters and stuff...I've had 2 bladder infections now in the past 2 months and I use a new catheter every time. I wash my hands, I clean the urethra area like they do in the dr's office, with that red stuff, I use a fresh needle and syringe every time and I also wipe the tops of the medicine bottles off with alcohol and let them dry before I take the medicine out.
                      BUT
                      a few months ago, I was using the same catheter for a week and didn't have any infections at all. I would do what these guys said not to do...oops...I would wash it with soap and water, but then I'd pour a little alcohol down it to get the water out and dry it out faster and sterilize it. Then I'd put it on clean paper towels in my bedroom to dry. Probably could have caused problems for me doing that. But I find it really strange that I use a new catheter each time now but I still got these bladder infections.
                      And MAN do they hurt!!!

                      K
                      Past treatments:
                      -3 hydro-distentions/cystoscopys, with addition of medicines. Recovery took forever, wasn't worth the increased pain for several months.

                      -DMSO - That was horrible, it caused pain bad enough to make me cry and scream. The urologist told me it worked for everybody, so I must not have IC. Right....needless to say I didn't go back to him. (UPDATE) Just got a small check in the mail, apparently from a law suit. lol

                      -Elmiron didn't work. Made me gain 50 lbs. Now just using it in the installation.


                      IC Rx:

                      Neurontin, Oxybutynin, Darvocet
                      Heparin 3cc/Kenalog 1cc/Sensorcaine 20cc, Elmiron pill, works for temporary relief.

                      Comment


                      • #26
                        This may be a really stupid question - but is it the lidocain in the instills that's causing all the pain?? I thought it would numb my bladder and make the pain go away..??!!! I burn inside my bladder very soon after the instill and for at least an hour after. My urethra also burns and I'm using a very little bit of lidocain jelly on the cath.
                        Jan

                        Comment


                        • #27
                          Jan,
                          You may be allergic to something in the lidocaine gel. I am allergic to glycol and it was in one of the lidocaine gels. After they stopped using this one I was fine. You can also use surgilube on the cath rather than lidocaine. It could also be one of the ingredients you are instilling.
                          Teresa

                          We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                          Comment


                          • #28
                            hm

                            Originally posted by Jan S. View Post
                            This may be a really stupid question - but is it the lidocain in the instills that's causing all the pain?? I thought it would numb my bladder and make the pain go away..??!!! I burn inside my bladder very soon after the instill and for at least an hour after. My urethra also burns and I'm using a very little bit of lidocain jelly on the cath.
                            Very well could be the lidocaine! Can you leave it out and try it just with the other ingredients to see if that helps? Certainly isn't gonna hurt if you leave it out of the mix, especially when it hurts to use it.

                            I never considered it would be an allergy. Hm, good point. I wonder if that's why I couldn't handle it either. I just thought it was because my bladder was so raw or something.

                            K
                            Past treatments:
                            -3 hydro-distentions/cystoscopys, with addition of medicines. Recovery took forever, wasn't worth the increased pain for several months.

                            -DMSO - That was horrible, it caused pain bad enough to make me cry and scream. The urologist told me it worked for everybody, so I must not have IC. Right....needless to say I didn't go back to him. (UPDATE) Just got a small check in the mail, apparently from a law suit. lol

                            -Elmiron didn't work. Made me gain 50 lbs. Now just using it in the installation.


                            IC Rx:

                            Neurontin, Oxybutynin, Darvocet
                            Heparin 3cc/Kenalog 1cc/Sensorcaine 20cc, Elmiron pill, works for temporary relief.

                            Comment


                            • #29
                              I know some people have tried each ingredient individually to see which one was bothering them. You should talk to your uro about this.
                              Teresa

                              We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                              Comment


                              • #30
                                Just wondering if you had a test for UTI or you were going by symptoms. Dell said many times IC acts like a UTI. A negative test tof UTI means it is IC. DO NOT under any circumstance do an insitllation when you have a positive test for UTI. Talk to your doctor about when it is safe to resume instillations.
                                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

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