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  • #1

    Instillations?

    I just got diagnosed with IC in February and I've been on elmiron since then and also changed my diet to IC friendly foods. I've still had constant pain ranging from moderate to severe everyday. I went to see my gynecologist today and he told me that I still have a significant amount of blood in my urine and the next three things we need to look into to see if IC is causing my pain are; I need to see a urologist because it looks like it's more severe IC; seeing a GI specialist to see the pain is caused by something GI related; and getting another tilt table venogram (because I have pelvic floor myalgia and it could be that they missed a vein on my right side).

    When he told me about having a more advanced stage of IC he mentioned instillations, I saw it on here, and now I am wondering more about them. What do they entail and what do they do? Have they worked for many people? Any help would be much appreciated, I'm so tired of being in this much pain every day.
    Emily Anne

    Had abdominal pain since I was 12 that started getting much more severe when I entered college. I just got diagnosed in February 2011.

    Medications:
    Elmiron (100mg) 3x/day
    Prelief

    Diagnosis:
    Severe IC, Bladder which holds 300 mg rather than the normal 600 mg, Pelvic Floor Myalgia, Imperforate Hymen (surgery in 2008), Ovarian Cysts

    Treatments:
    Heating pad/rice sock, laying down when in pain, rescue IC diet

    Tags: None
  • #2
    Instillations have been my miracle. I do home rescue instillations which consist of Marcaine, Sodium Bicarbonate, Heparin, and sterile water. I do them twice a day - morning and night. They are soothing and stop the pain immediately - within 10 minutes of putting the solution in my bladder. I was worried about doing them because being catheterized has always been unpleasant, but I learned that using a smaller catheter, non latex, and doing it myself makes it no big deal. Not painful and is something I can do immediately to feel better. They reduce my pain and frequency - and no systemic side effects.
    They are a big reason I've been able to continue my career as a teacher. My IC is not mild, so that's why I have to do them twice a day. Some people can do them once or twice a week & get good results.

    The instillations I now do at home are different from DMSO instillations which are designed to draw out toxins from the bladder cells. I did those my second year with IC, but they are uncomfortable and provoked a flare in me for 2-3 days afterwards. So, after the initial series of 6 once-a-week instillations, I had one a month - usually on a Friday so I could flare during the weekend. They helped, but not enough and that's why I changed to the more frequent ones. They can be irritating, so some doctors don't even prescribe them anymore.

    Make sure you find out from your doctor what kind of instillations you will be doing, so you'll have an idea of how often you might need them and what to expect. I hope you get good results from the instillations you're considering.

    Wishing you better days 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

    • #3
      I have been doing home rescue instillations for a number of years. They totally manage my ic sypmtoms. It is the only treatment that I have ever had. I would highly encourage people to try resuce instillations. I do not use DMSO but lidocaine, heparin instillations.

      Dr. Dell, an ic specialist, has found that these instillations are effective in treating about 80% of his patients. I started with 3 a week but had to increase to daily for several weeks. Now I need them very infrequently except during seasonal allergy seasons in the spring and fall when I do have to increase to 5-6 times a week.

      There are links in my signature that may help you.

      I think of this disease as being diabetic..it is a lifelong disease for which, at present, there is no cure, only effective treatment. Most do find effective treatment. Feel free to message me anytime and I will be glad to share my experiences with 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

      • #4
        How long does the relief last?

        Hi,

        I am a getting a heparin, lidocaine, mercaine, sodium, sterile water instill done later today. I had one a few weeks back without the heparin. After the numbness wore off I didn't have any change in pain, it went back to what it was before. How long do you get relief from your instills?

        Bill

        Comment

        • #5
          If you have any meds you use for pain take them 30-60 mins before instill. Most seem to find that applying heat over the bladder area helps. I hope more will respond before your appt.

          I hope the heparin will not cause you problems. I have read that some have problems with the lidocaine and some with the sodium bicarbonate. I can't recall anyone posting that the heparin has been the source of problems. I am sure there are some who do have problems with heparin but it doesn't seem that is the offender, or at least it isn't as much of a problem as the ingredients you have already had in the instills.
          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 have been doing heprin instills one a week in the office and I still flare even with IC. This is the early stage to treatment (no OFFICICAL) dx but since I have pain at about a 4/5 each day I hope I can be helped with other things also. Feel so scared. I'm trying to work and I hope I can get to a point that this is managable
            Joslyn
            IC symptoms in May 2011
            Mild IC dx by Cysto July 2011
            Symtoms decrease 80% by September 2011!






            Tums 100mg
            fish oil 3-5 grams
            Probiotic 5 billion
            Magnesium
            Bladder Ease
            Unda Drops
            Mediclear Plus Protein Shake

            Physical Therapy Graduate!
            Meditation 2x a day
            Running
            Castor oil pack
            Teas (nettle leaf, linden flower, camomile, marshmellow root)

            Have tried
            In office instills (pridium, heprin, lidocain, elmiron)
            Cystoprotec
            Desert Harvest Aloe
            atarax 25 mg
            Vesicare
            Lexapro
            5HTP            sanctura

            Comment

            • #7
              pain meds prior to instills

              Originally posted by L. Thomas View Post
              If you have any meds you use for pain take them 30-60 mins before instill. Most seem to find that applying heat over the bladder area helps. I hope more will respond before your appt.

              I hope the heparin will not cause you problems. I have read that some have problems with the lidocaine and some with the sodium bicarbonate. I can't recall anyone posting that the heparin has been the source of problems. I am sure there are some who do have problems with heparin but it doesn't seem that is the offender, or at least it isn't as much of a problem as the ingredients you have already had in the instills.
              I am just wondering if the instillations are painful for anyone else? they hurt me a ton buy my doc says it shouldn't and won't prescribe a pain pill or anti anxiety. Last one I got I pee'd pink so obviously the catheter is hurting something. I was just curious if anyone else takes pain pills before the instillations?
              Crystal

              Diagnosed 2/2011
              30 years old

              Current Treatment:
              Elmiron
              Antihistamine
              Quercetin
              Aloe Leaf
              N-Acetyl Glucosamine
              Pribiotic
              Yoga
              Meditation
              Leap Diet (based on MRT food sensitivity test)
              IC Diet
              Prayer!

              Planning to try:
              Colostrum

              Comment

              • #8
                Paim meds

                I think it absurd that a doctor won't prescribe pain or anti-anxiety meds, especially the pain meds for IC. You need a different doctor. I need both meds and they help. Without the pain meds, I'm not sure what I would do.

                Please don't suffer needlessly. Pain meds are not a bad thing if you need them, and IC patients need them.

                Bill

                Comment

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