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  • #31
    Originally posted by L. Thomas View Post
    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.
    Me? I have at-home test kits which came out positive, so I went to the dr for their test and got Cipro.
    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


    • #32
      weird reactions to self-instills

      After having my doctor do the instills three times a week for the last year and a half, I finally started doing them myself.

      I've gotten pretty good at doing them---the problem is I'm getting some weird reactions. Also, they're not nearly as effective as the ones I get from my doctor.


      These are some of my reactions:
      One: I keep on getting bladder infections.
      Two: Sometimes I get up in the middle of the night and I can't pee at all. It's like the brain bladder connection has been broken.
      Three: Last night I peed in my bed when I was sleeping! That was after doing two instillations within a two-hour period.
      Four: Sore urethra.


      To deparalzye my bladder, I've been taking valium and terasozin before I go to sleep. Anyone with any luck with terasozin?

      Comment


      • #33
        Hi Maxeeeene,

        Here are some suggestions for conversation with your doctor:
        Technique & Cleanliness: If you keep getting bladder infections and you are new to doing instillations at home, you might talk with your doctor about your technique & making sure you are keeping & storing the equipment clean enough and making sure you are cleaning yourself well enough prior to the instillation to not be pushing external bacteria into your urethra.

        Catheter use: Once you've gone over that with your doctor, if you have not found a reason for the infections, you might ask your doctor for a prescription for enough catheters so that you can use a new catheter each time.

        Low dose antibiotic: If you are using a new catheter each time & there is no other explanation for the infections, your doctor can prescribe you a low dose antibiotic to prevent most infections.

        •Did the doctor tell you it was ok to do two instillations in a two hour period? Just like it is important to follow the doctor's instructions exactly in mixing your solution, it is essential to follow the doctor's instructions exactly in how often to do instillations and how long to hold the solution. My doctor would have a fit if he thought I'd done two instillations in two hours! Remember from our other conversations here on the boards that there are risks to instillation medications, risks to your bladder, as well as to your heart, from overdose? Please remember that just like with medications in pill form, medications in liquid form need to be respected and used with care, exactly as your doctor prescribes them.

        If you are unable to void after doing instillations, that is something you absolutely must discuss with your doctor! Your dosage or hold time may need to be adjusted.

        It sounds like you are finding some relief with the instillations, just please be careful & continue working closely with your doctor, ok?
        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


        • #34
          Maxeeene: Kadi is correct! You absolutely need to get in touch with your doctor so you can review the instillation procedure. You need to follow his/her orders exactly --- two instillations in two hours could be too much.

          It does sound like you may have an infection.

          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


          • #35
            self cath

            Dido Kadi........ follow up with doctor, very important.
            Blessings,
            Ruth

            Comment


            • #36
              doing instillations by yourself

              I have been doing weekly instillations by my self at home for over three years now. I have not had any urinary tract infections. I never re-use any equipment. Please look at earlier detailed posts I have done about how I do it under Kathy in Canada.

              Good luck,

              Kathy

              Comment


              • #37
                self instills

                I have been doing them since2003, I mix 50.00 units heparin,7 mil heparin 4 mils of sodium barcarbiotae. I use the lofric caths, I never reuse anything. I have been lucky I guess I have never had a infection as of yet (knock on wood)Good Luck.
                Blessings,
                Ruth

                Comment


                • #38
                  self intstills

                  L.Thomas..... what size of cath do you use, and again why not the lo fric caths?
                  Blessings,
                  Ruth

                  Comment


                  • #39
                    IC self cath

                    I have been having side pain for a couple of days,so I made a app. and dr said I have a kidney infection? he said that is why I have the side pain? gave me Cipro.
                    Blessings,
                    Ruth

                    Comment


                    • #40
                      I don't have any problems with the 8"fr pediatric tubes that I use for catheters.
                      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


                      • #41
                        self cath

                        Maxeeeeene......... I think the gas is air in the syringe, it happens sometimes, kind of wierd. Good Luck
                        Blessings,
                        Ruth

                        Comment


                        • #42
                          Originally posted by curlycue View Post
                          I have been having side pain for a couple of days,so I made a app. and dr said I have a kidney infection? he said that is why I have the side pain? gave me Cipro.
                          Just do what your MD says. Doing insills when you have a UTI can cause a kidney infection.
                          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


                          • #43
                            instills

                            Can I still do instills while having a kidney infection? I ask the dr he said he had no clue? Great I said.
                            Blessings,
                            Ruth

                            Comment


                            • #44
                              My doctors have said no instillations during a bladder infection-- they can drive the infection into the bladder wall, the bacteria can get carried along with the medicine into the bladder wall & make it harder to treat.

                              My pharmacist also said that the Macrobid I take for bladder infections will not be as effective if I do an instill at the same time because it works by making the urine acidic and the sodium bicarbonate in the instillations will neutralize it.

                              Don't you just wanna ask for your copay back when the doctor says he/she doesn't know? (I never actually say it--it's just one of those evil thoughts I get sometimes...)
                              :

                              Hope you feel better soon,
                              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


                              • #45
                                Dr. Dell told me that I should not do the instillationsif I have a UTI because it would drive the bacteria into the kidneys and cause a kidney infection. I don't know if the ingredients of your instills would do this or not.
                                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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