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  • #1

    Doing Your Own Instills

    Hi there,
    I have not posted in quite a while as I have been trying to get the right treatments and meds for me. I have done my instills myself for over yr now!! I have maybe given myself 1 bladder infection if that. I have done the heparin and also the elmiron. Currently elmiron. I LOVE doing them myself as it does NOT hurt at all since I can breathe and release my sphinter muscle. I use enough numbing medicine (lidocaine) to be able to sleep thru the night!! I love it cause it is the ONLY time that I can sleep thru the night! without getting up to pee a gaszillion times!! So by the time I wake up, I have done my mini hydrodistention, thanks to all the numbing medicine I use !! I sleep in mine and it has increased the capacity of my bladder by several cc's over this yr. I have had a hydro for diagnosis and then another this yr, which makes my pain less and all my syptoms less!!! I still hurt, don't get me wrong. There are days I wake up and the pain is so intense that I feel like I am going to vomit.....................but I feel like I have come a long way from where I was. It was all because of my mother!! She has IC also and she taught me all that I know as she was diagnosed yrs before me. She was one of the first people to get to do self home instills in our area and she has come such alone way too!!! She was at one point doing instills up to 3 times a day!!!!
    She has been such a help to me with all of this and this site is a world of information!!! I and my mother both tell all of those we speak with about this site as my mother was the knoxville, Tn support group leader for several years. Due to family issues she had to quit but would love to be able to do it again. We believe it runs in families and we want to help all those we can with this horrible illness. We know so much about it since we have both been afflicted wit is horrific disease.
    thanks
    alinic
    Tags: None
    • #2
      I'm glad you seem to be doing well. Thanks for giving encouragement to those who might be considering doing home instillations.

      Warm hugs,
      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

        • #3
          It's great that you have started instills and they help you. I have been doing instills since I was first diagnosed. With the 1st instill I could tell it was going to work. I go for follow-up visits every 6 months. I have had no problems so far. I know that IC is a real pretender. My urogyn agrees that there is no cure only treatment. My treatment is very successful.
          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

            • #4
              Hi L. Thomas.
              I was noticing that with your instills, you use 2cc of sodium biocarbonate, and 8cc of lidocaine and the 10,000 unit of heperain. I had my first instill last Friday and I had a bad reaction, where my bladder swelled some and I could not pee afterwards. My doctor used the following meds; Heperain,biocarb,kenalog,marcaine. Well, I believe she was using a high dosage of the meds. I asked her if she could cut out the marcaine as I think it irritated me and she said no, but she would cut it down to 25ccs. I read that you only use 8cc of lidocaine. Also she was using much more of the sodium biocarb I am sure. In total I had about 98ccs of liquid put in me.
              Does 25ccs of marcaine sound like alot? Actually she said she would cut it down to that, so I am assuming she was putting in much more. Just curious.
              Jen

                Comment

                • #5
                  You know when I read the recipes there seems to be a big difference in the total amount instilled. A number of post I have seen have instills that are more than ½ the capacity of a normal bladder. I’m not sure exactly how related Marcaine and lidocaine are. I know Marcaine numbs like lidocaine. If you look at your total instill 25cc out of 100cc would be less than 8cc out of 11cc. I wonder if it was the total amount instilled rather than the amount of Marcaine that caused the problem? Do you think she might make the total cc smaller?
                  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

                    • #6
                      Hi L.Thomas.
                      I am not sure either, but when I talked to the doctor, she did not seem willing to change much at all except for she said she would lower the amount of marcaine to 25ccs. So I am guessing she put in alot more to begin with, not sure how much though as she did not say. But I do know that when I had the instill, the nurse had two Big syringes full of liquid that she instilled in me. I believe she said the total amount of liquid was close to 98ccs in total which is a little over 3 ounces.
                      I am not sure if that is alot or not. I just know that I have talked to people who have them done and one women said they used a total of maybe 3 tablespoons in her instillation. That is why I was so shocked when the nurse told me I would have 98ccs. I dont think it was the amount per say that she used that caused me to have the reaction, but more so likely one of the meds itself irriatated my bladder and caused it to swell some and I could not pee afterwards.
                      That is why I called her and tried to see if she would omit one of the meds, but I got no where with that. I am in so much pain and want so bad to do another instill, but do not want to go through all that pain of being cathed to get the stuff out and having a hard time to pee afterwards. I'll tell you, after she cathed the stuff out, when I finally did pee, it felt like peeing razor blades. And I could not even use lidocaine, as the pain was far up in the urethra. Arrrrrg I just dont know what to do. I am in so much pain. At least if she would give me something for pain incase I ended up having to do tha cath after the instill, maybe that would help the pain, but she refused to give any pain meds. This stinks.
                      Jen

                        Comment

                        • #7
                          My dr gave me room to experiment

                          My dr gave me room to experiment with the amount of marcaine(lidocaine) or which ever caine you use. She told me that the WORST thing that could happen would be I could NOT pee and I would have to cath the treatment out. Which is a minor thing in my mind. I wanted to numb my bladder good and I do. I have always been able to pee and I have used up to 40ccs of marcaine at a time.
                          thanks leeshel

                            Comment

                            • #8
                              In my mind it makes sense to me if you stretch an already irriatated bladder that in itself would be painful. Do you know what your bladder capactiy is? Mine is over 500cc and I only use 11cc so I know my relief is not from filling the baldder completely.
                              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

                                • #9
                                  capacity

                                  Mine is about 1000cc after 7 yrs of being diagnosed and instills for 6yrs and 5 hydrodistentions. I started at 650-700cc 7 yrs ago.
                                  leeshel

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