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  • Helpful Hints For Home Instillations

    First I would like to share my success story with you. This is the link to my success story. I think it may motivate you to give instills a try: http://www.ic-network.com/forum/show...Thomas+success

    Please do not take my suggestions as medical advice.
    Follow your doctor’s instructions.

    I know how reluctant I was when my urogynecologist suggested home instillations . I had great tips and instructions from his nurse. Because she was so patient and empathetic, it took only 3 visits to learn. :woohoo: Honestly, I don’t think anyone could be more apprehensive than me about self-cathing. If I can learn how to do this, I think just about anyone motivated can learn. Just be patient with yourself.

    Supplies for instillation:
    8cc Lidocaine
    10,000 units Heparin
    30cc syringe
    18gauge needle
    8fr pediatric feeding tube (used as a catheter)

    First visit: Observing the instillation with a handheld mirror
    (I watched in the office the first time and then I practiced locating the urethra opening at home until the next visit).
    Wash your hands before you begin.
    1. Sit on a stool in the bathtub.
    2. Position the make-up mirror so you can see what you are doing.
    3. Use the index and middle fingers of one hand to hold the folds of skin back to expose the urethra opening.
    4. Pee in the bathtub and watch for the urethra opening.
    I got a make-up mirror on a stand to use at home.
    (Did you know a girl can pee like a boy if you hold your skin back?) .

    Second visit: Finding the urethra “wink” and catheter insertion.
    Wash your hands before you begin
    Still using the mirror:
    1. Hold the folds of skin around the urethra with one hand.
    2. Gently brush “down” from the top of the exposed skin toward the vaginal opening with the index finger of the other hand.
    3. As your finger passes over the urethra opening it will “wink” at you.
    4. Inhale before you insert the catheter and exhale as you insert the catheter. Muscles relax if you exhale.
    Another trick to find the urethra opening is to cough while holding the skin back. I practiced this at home in the bathtub until the next visit.

    Third visit: Compounding the mixture in the syringe. Complete instillation.
    The first time I used the syringe and needle to draw the mixture I was shaking so much I thought I was going to stick myself. I had trouble keeping the meds form being drawn back into the vials. You cannot let the medicines be pulled back into the vials because it contaminates the contents of the vials. Since the heparin is a single dose vial if you put the lidocaine in the syringe first you don't have to worry if it accidently flows into the heparin as you drain the contents of the vial of heparin. A pharmacist showed me how to fill the syringe using “negative pressure”. A nurse could also show you. It is almost fool proof.

    At home:
    Wash your hands before you begin
    1. Use the mirror sitting in the bathtub until comfortable and ready to try it sitting on the toilet.
    2. Sit on the toilet, place the mirror on the floor and position it so you can see what you are doing. You will need to sit WAY back on the toilet and spread your legs fairly wide.
    3. When you are ready to do the instill without the mirror, keep the mirror in place, close your eyes and perform the instill. With the mirror in place, if you need to check what you are doing, all you need to do is just open your eyes.
    I was successful the first time. Now it seems like "old hat". Cathing is quick. It's filling the syringe that takes so much time.

    I dispose of the catheter, needle and syringe at home and take them to a monitored disposal site.
    Used needles are kept in an empty pill bottle with a child proof cap.
    People addicted to drugs search garbage cans for needles and syringes.


    Cleaning and storage of the catheter for reuse:
    My urogyn allows me to use the catheter 4 times. I do not reuse needles or syringes.

    1. Washing the catheter:
    Wash Only the OUTSIDE with warm soapy water and rinse
    DO NOT SUBMERGE THE CATHETER IN WATER.

    2. I store the catheter in the package that it was sealed in. When I open the sterile package that contains the catheter, I just open the top and after using the catheter loop it like it was when the package was opened and fold over the top of the package. The inside of the package is sterile.
    I keep the catheter and supplies for 4 instill in a cloth make-up bag so I know when I have used the catheter 4 times.

    I hope these instructions are not too confusing and help you. Just PM me if I need to explain any of my hints.


    Several have asked “How do you manage all the stuff when you are doing an instill.” I think this is what I do.

    Fill the syringe with the cocktail and replace the plastic needle sheath over the needle. With the syringe connected to the needle I hold the needle (with the sheath in place) in my mouth.

    I open the catheter and keep it looped sort of like a lasso and hold it in my hand (with my fingers placed where I would hold the catheter to insert it). I keep the the folds of skin held back with the other hand. With practice you will learn how to manipulate your fingers so that you will be able to find the opening with the hand that holds the catheter and guide the catheter with the other hand.

    I make sure the catheter is advanced far enough that it will not “fall out”. I hold the catheter in place with the hand I used to insert the catheter. Then I use the hand I held the fold of skin with to twist the syringe off the needle and attach the syringe to the catheter.

    I remove the catheter with the syringe still attached. After the catheter is out of the bladder detatch the syringe from the catheter, throw away the syringe. I store the catheter in the package that the catheter was sealed and fold the top of the "envelop".

    Keep the catheter attached to the syringe until you have completely removed the catheter from the bladder. If you disconnect the catheter from the syringe before you remove it from the bladder the contents of the instill will "shoot back" out of the catheter.

    I have a pouch sized to hold tampons that is just the perfect size to hold supplies for 1 instill so that I can take it with me. When I am in a public restroom I hang my pocketbook on the coat hook so I can reach the catheter and filled syringe.

    If I purchase syringes and catheters from a durable supply provider it is covered by my insurance. After my deductible the syringe cost $0.10 and the catheter cost $1.00. I can use the catheter 4 times. The needles cost $0.15 each. The cost of the durable supplies for 1 instill is $0.50 and the meds cost about $0.35 so the total cost for 1iinstill is less than $1. You will need a separate prescription for the durable supplies. The 2 medicines for my instillations are generic so a 30 day supply cost $10.

    Hope I haven't confused you with these instructions. If I can help in any way just PM me. I have been doing instills for several years and I don't have all the answers but I will be happy to share my experiences with you.
    Louann
    Last edited by L. Thomas; 10-20-2011, 04:58 AM.
    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

  • #2
    Thank you, that's very nice of you to post all that!

    Diana.

    Comment


    • #3
      I know how worried I was in the beginning. I didn't know any one that had done instills and I just had no confidence. I think it would have helped me if someone had been there outside the MD office. Maybe this will give some the courage to give them a try. It may be the answer to their pain.
      Last edited by L. Thomas; 05-10-2007, 02:58 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


      • #4
        good info

        About the drawing meds into the needle part, my doctor said to pull out the handle of the needle to draw some air in, then push a little air into the bottle and pull the liquid out. Keep doing that until there's no air left or you have everything you need out of the vial. Otherwise you create a vacuum inside, and it's hard to draw it out.

        Also make sure you wipe the top of the vial with alcohol before you stick the needle in, unless it's a single use vial. But the sensorcaine is usually bigger, like you said, and you use that a few times. So pushing a little air in helps you draw the meds out.

        Oh yeah, wash the area first as well, and/or wipe it with that red aniseptic stuff...I forget what it's called now. lol But keeping clean helps avoid bladder infections. That would be horrible to have on top of IC.

        Kristie
        Last edited by kristies2; 12-23-2008, 03:21 AM. Reason: forgot something
        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


        • #5
          If you push all the cc's of air (8cc in my case) at once, when you let go of the syringe plunger the syringe will fill by itself. When I had more than one med I needed to draw I just repeated the procedure for each med.
          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
            I wouldn't hold any part of the supplies in my mouth --- too many germs there. I use a washcloth which has been washed in clorox water, dried, and stored in a sandwich bag to make a "clean" place to lay out supplies.

            I found that the easiest way for me to insert the catheter is to put a large flashlight on the floor in front of the toilet, pointed up. Then a mirror on one side of the seat. I put one foot on the other side of the seat and move my body until the light and mirror are allowing me to see clearly. That way, the urine flows directly into the toilet. I then sit down and insert the syringe into the catheter end to put in the liquid, then remove the catheter before taking the syringe from the catheter.

            The supplies, with the exception of the needle & syringe, are then immersed in hot water containing antibacterial soap and washed and rinsed thoroughly and stored in another clean wash cloth. My choice for storage is a small cooler --- it helps avoid temperature changes, plus if I want to go away from home, I could just grab the cooler. The cooler is one of those that will hold about six or eight soda cans. It will hold the supplies, plus the meds needed.

            Donna
            Stay safe

            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
              Instill Tip

              Before I empty the instill, I use ice externally for a couple of minutes. Seems to really help the stinging upon emptying.
              Live with three cats.

              Medicine for depression,anxiety: Parnate, Trilafon, Klonopin
              Synthroid (thyroid), Loestrin to suppress menstrual cycle
              Elmiron 200mg
              instills

              Comment


              • #8
                I am hoping to start instillations, but am deathly afraid of course. I have been putting them off for months. Please tell me a few things: Are you prone to getting UTI's often when using a catheter frequently? I am sure you would sterilize or use a new one, but just by using a catheter so often, are you going to get a UTI? What is everyone's experience with that? I know we are all different. I am just trying to get some kind of idea. Should I ask the doctor for the Lofric brand of catheter? Pediatric catheter? Are most docs using Elmiron or Heparin for instillations? I heard Heparin was hard to find, but that was quite a few months ago.
                Thank you for whatever help someone can provide!!
                Christi
                Christi

                Comment


                • #9
                  You have every right to be apprehensive about home instills. I think everyone that started home instills will tell you they were worried or scared. Even nurses that cath people all the time say they were worried. It is just different when you do the instill on yourself.

                  I guess if you are prone to get UTI you probably will get them. I haven't had any during the time I have been instilling but I was not prone to get them before I started instills.

                  I did use a new catheter for each instill for the first couple of months. Now I just follow Dr. Dell's instructions. I use a catheter 4 times.

                  I have never used anything for home instills except 8fr 15" pediatric feeding tubes. I have never had problems using them. A leur lock syringe will attach directly to this feeding tube.

                  There are some that find lofric are more comfortable. Some prefer a larger catheter. Some MD's have different sizes you can try to see what works best for you.

                  Elmiron is very effective for some but it was not effective for me. Elmiron is much more expensive than heparin. I use heparin and have found it totally effective for me. I couldn't get heparin for about 5 months. but I have had no problems getting it in the last 8 months.

                  There are literally 100's of recipes. Instills are not a sure cure for everyone and getting the right instill may not be as easy for some as it was for me. I have a pretty standard cocktail of lidocaine and heparin. At first it had 2cc sodium bicarbonate but I can't tell any difference with or without it.

                  I am here to encourage but I don't want to mislead you. Like you said, everyone is different. Dr. Dell encourages instill because he has seen such positive response to them.

                  I am not an expert but I'll be happy to share my experiences with you. Just post or feel free to PM me.
                  Louann
                  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


                  • #10
                    self instill

                    Dear Louann and Anyone else who can advise me on this:

                    I finally got the ingredients and did my first instill last night. After searching for my urethra I finally found it and inserting the catheter turned out to be must easier than I thought--and not painful at all. However, when I took it out, there was blood on the tip of it. And the instill didn't seem to have much effect. Mostly I felt irritated.

                    You said you reuse your catheters, right? You just wash them in water and then store them in cloth to dry. I blew through mine to get the water bubbles out. Do you think that means I contaminated it? Also, I can reuse the syringes, right?
                    Instill formula:

                    Solu-Cortel 100 mg aet-o-vinl

                    Sodium bicarbonate 8.4percent 50 cc vials #5

                    Bupivicaine 0.5 percent 50 cc vials #5

                    Instillation devices:

                    35 cc luerlock syringes

                    8 French pediatric feeding tubes yes

                    12 cc syringe with gauge 1' needle



                    Thanks for all you help.



                    Maxine

                    Comment


                    • #11
                      Hi Maxine, I would not use a catheter that had been blown through, there could be contamination. I do not re-use my catheters, though my doctor said I could rinse them in hot water & place them in a clean brown paper bag to dry. I had too many infections when I did that however, so I just order enough to have a new one each time. I do rinse in hot water & dry with clean paper towels the mixing cup & the syringes. I keep them in a plastic drawer lined with clean paper towels under my sink. I hope the instillations help you as much as they do me.
                      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


                      • #12
                        Blowing into the tubing could very well contaminate it --- our mouths are the most "germy" part of our bodies. When I was doing self instills, I did re-use the catheters, but I just washed them in very warm water with antibacterial soap, rinsed thoroughly, being sure I rinsed the inside thoroughly, then wrapped them in a clean wash cloth.

                        Donna
                        Stay safe

                        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


                        • #13
                          Self cath

                          Dont you ladies use lofric caths?
                          Blessings,
                          Ruth

                          Comment


                          • #14
                            I don't use lofric catheter. Dr. Dell said not to do anything to the catheter after use other than wrap it in a clean wash cloth. Some very carefully wash the catheter. I would just ask the MD what he suggest. If you think about it, the catheter is in a sterile package and urine is sterile so everything that contacts the inside of the catheter is sterile.
                            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


                            • #15
                              self-cath/instill questions

                              I've done the self-instills twice and the effects are negative. Mind you, I've been having instills at the doctors for one and a half years three times a week and the effects have been fine. Sometimes I can hold my urine for as long as five hours after an instill!

                              I'm wondering if the 5 mg of bupvicaine is too low. I'm thinking of doing two vials instead of just one. What do you think? (I know this is something for my doctor to decide--but she's away and it's Sunday.)The rest of the meds are: Solu-Cortef 110 mg and Socium Bicarbonate 25cc,

                              Also, I have this weird reaction--gas coming out of my urethra when I pee. Is this an indication that I did something wrong with the catheter?

                              Now recap: I'm going to reuse the syringes--I rub with alcohol and recap after use and I'm going to reuse the catheters too. I'll boil the ones I blew into and pour alcohol down them--do you think that would do it? The whole thing seems so unsterile anyway--with all the fumbling around.

                              Thanks everyone.

                              I can't wait to get this right.

                              Maxine

                              Comment

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