Announcement

Collapse
No announcement yet.

My experience

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

    My experience

    I always try my best not to post anything too negative, but I have to get this off my chest.

    The bladder instills of elmirion did work for me at first. But as the treatments went along, I got worse. I don't know if it was due to the treatments or that the treatments just weren't working.

    After my 6th treatment I had a very bad IC flare. I thought I got a UTI but turns out the culture was negative.

    I really need some encouragement right now. I feel like there aren't many options for me left. I can't help but feeling very depressed.

    The phrase "no cure" keeps coming into my head.
    Tags: None
  • #2
    I've never had elmiron instilled, but there are people who are instilling other solutions and having some success with them. There were several different solutions that helped me, but I think the most soothing was solu cortef.

    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
      Instillations can vary a lot by formula. Just because one doesn't work, doesn't mean another one may not give you much needed relief. I do heparin, marcaine & sodium bicarbonate instillations & those are a miracle for me. I tried heparin, lidocaine & sodium bicarbonate ones, and I tried DMSO ones. So, these were the 3rd type of instillations I tried & I'm glad I hung in there & continued to ask my doctor for something different.

      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

      • #4
        Instillations

        I've started instillations also. The office says each doctor has a different cocktail. I can't help feeling like this is just guessing.
        The nurse yesterday forgot to put the meds I brought to the office in the instlls.
        My pain is about a 4/5 most days and I work and care for a toddler. I'm doing the IC diet and trying to be patient. Any thoughts from anyone out there?
        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

        • #5
          Joslyn, if the instillations help, but only for a short time, you might want to talk to your urologist about learning to do them at home. There are some ICers who do instills every day, some twice a day, and it helps.

          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

          • #6
            Dmso

            I have been using Heparin instills for many years and felt fine.
            Just recently My IC has been a bother. I wonder if some DMSO treatments will help. Any thoughts?

            Comment

            • #7
              solu cortef

              Originally posted by ICNDonna View Post
              I've never had elmiron instilled, but there are people who are instilling other solutions and having some success with them. There were several different solutions that helped me, but I think the most soothing was solu cortef.

              Donna
              What is solu cortef? I have neve heard of it.

              Comment

              • #8
                Solu cortef is a steroid.

                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

                • #9
                  I have been doing home instillations for several years. At first I did 3 a week but had to increase to daily for 2 or 3 months. Now I need them only 1 or 2 times a month. I had Elmiron in my instill for a while when I couldn't get heparin. Elmiron did not help my sympotms.

                  Many MD use instills as a "jump start" for oral Elmiron. I had such success with home instillations I have never considered Elmiron. Dr. Dell has done research studies with Elmiron. He thinks it is promising but not enough to say it is the "treatment of choice" yet. And we agree, if something is working, why change. So as long as the instills work for me that is what I am sticking to.

                  Don't think a thing about what you post. There a lots of people who basically have no one they can talk to about what they are going through. We have had so many different experiences with IC that "negative" and "discouraged" is not a new topic. Not only that, many times people can respond with options you or your MD have never considered.
                  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
                    I was in much pain in the spring and did my first series of instills at the doctor's office ending May 19th. At that time, I was mostly pain free for the first time in months. It was a wonderful few weeks. Last weekend, it came back with a vengeance. Omg, does it ever hurt! I am taking Prosed and Hydrocodone for the pain, but with little relief. So I have scheduled another series of instills starting next Wednesday.

                    Mine have Lidocaine, a couple of other things mentioned by others, but not Elmiron. If this works again, I am willing to continue them whenever needed. Anything to get rid of this pain.

                    Comment

                    Previous template Next
                    Working...
                    X