Announcement

Collapse
No announcement yet.

question about (self) installation

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    question about (self) installation

    For those of you who do this at home... at what point in the progression of IC did you try this??? Cath-ing feels like razor blades going into my urethra, so do you use a juvenile sized cath? Use lidocaine to numb it first?

    Tonight I am really struggling with an IC flare, my breakthrough meds are not helping very much. I could see that if I had this as an option in my toolbox, I would use it.

    Thanks for answering.... Regards, Carla
    Tags: None
  • #2
    I guess there probably is no answer to your first question about at what point in the progression of IC -- in most, IC doesn't progress per se, and also, the decision to do instillations doesn't depend on anything like that anyway. It's just a treatment option that doctors may suggest at any time, or that you may decide to bring up with your doctor yourself. So, if you think that perhaps you want to do this, go for it Ask your doctor!! If you have to you can bring in some info on these instills to your doc to convince him, give him recipes, etc.

    A lot of ICers do use pediatric catheters (8 or 10 Fr), and some even use a pediatric feeding tube, which is even smaller. I personally use either a 12 or 14 Fr. Lidocaine gel is also a common way to lubricate and numb the urethra first. Your doc should be able to prescribe that.

    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.

    Comment

    • #3
      Thanks, Jen, for your quick answer. Hopefully, this flare will come under control soon. Actually, my uro did prescribe me some lidocaine to help for when "love" really causes soreness in the urethra area. Of course, "love" is certainly the last thing on my mind since I'm flaring.

      How are you doing these days?

      Carla
      Northern CA

      Comment

      • #4
        For me, it's much less uncomfortable to insert a catheter if I do it myself. If you feel you'd like to try it, I suggest you talk with your uro about learning how.

        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

        • #5
          Rescue instillations have helped me a lot & while having the doctor or nurse catheterize me is uncomfortable, cathing myself is no big deal. The instillations have restored much of my quality of life.
          Good luck!
          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

          • #6
            My first and only treatment has been instillations. After the first 4 I started doing them at home. I agree with IC Donna. I prefer to cath myself even if it is a larger cath than I use at home.

            I use 8fr pediatricic feeding tube. It is much smaller than the ones in the MD's. If you have an understanding MD they will help you through this. The last urodynamics I had it was a 24fr and I didn't have problems wiht it. I have notes on the instructions that helped me if you would like I would be happy to PM them to you.
            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

            • #7
              Thank you Donna, Kadi, and L.Thomas for your replies.

              Was it hard to learn to do yourself? Do you use lidocaine to numb the urethra first?

              I would love to see the instructions...but only as a tool to decide if I want to learn how to do this.

              Thanks! Carla

              Comment

              • #8
                I didn't use lidocaine but a lot of people do.
                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
                  When I learned to cath myself, I was going to a urologist who wasn't too psyched about having me try it at home (this was my very first uro, before I found my last two great ones). They knew I was in the medical field, so they just tossed an instruction sheet and some catheters at me and said, "Go for it."

                  So, the first thing I did was put on a hiker's headlamp to illuminate the crotch area when I looked down, and I examined my genitals with a mirror to locate the urethral opening (it helps to bear down just a tiny bit as if you're straining to pee, because that can get the urethra out of "hiding" -- sometimes it gets kinda closed off or smooshed up near the clitoris).

                  I already knew about sterility from working in a microbiological laboratory for years, so I was able to deal with that (it had guidelines on the sheet they gave me -- you'll get details from your doc too, but the main issues are washing your hands and preferably also washing the genital area if you're in a place to do so, making sure your syringes for mixing your instill are clean, and making sure that the catheter touches NOTHING other than your urethra).

                  Then I got everything together within reach, lubed a catheter with KY jelly, shrugged, and aimed... got it on the first shot I think one of the reasons I got it right away was that I spent a lot of time inspecting myself... and I was relaxed. That is the single most important thing I can tell you -- the more nervous you get, the more difficult it gets.

                  I did shove the catheter in a bit too far that first time, and hit the Hunner's ulcer I have on the top dome of my bladder, which hurt like mad... but that just taught me to go slower.

                  Now I'm an old pro -- it doesn't hurt at all when I do it, but it can be irritating if someone else has to do it for some reason. I've even cathed in the back of a moving car on the interstate going through St. Louis.... LOL

                  Not everyone has such immediate good luck with it, but most people find it only takes a few times to get decent at it. It can take a few sessions to get it right, but if your doctor is any good, he or his nurse should be willing to work with you in the office if necessary so you learn it well... don't settle for being left on your own if you feel you need more help.
                  ****
                  Jen

                  *Diagnosed with severe IC in 2004
                  *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                  *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                  *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                  **I am not a medical authority nor do I offer definitive medical advice. 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.

                  Comment

                  • #10
                    Ouch, Jen! I was just reading your post, admiring your bravery, thinking to myself, "what if you insert it too far??" then I read the part where you hit your HunnersUlcer- ouch, ouch.... I'm cringing here just reading it!

                    I do have a nice Ott Light I can use... plus I can see myself in true natural lighting.... oh joy! LOL First I have to get myself an appt. with an IC uro., which I am attempting to do right at the moment.

                    Thanks to L.Thomas, too, for sending along the instructions she had.

                    Regards, Carla

                    Comment

                    Previous template Next
                    Working...
                    X