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    When you get your instills, do you feel awful for the rest of the day? I have to make sure I have nothing else planned on those days. The last one was the worst. I couldn't hardly drive home..the pressure was so bad in the urethra and they use so much lidocane..they can't use any more. I felt shaky and like my bladder was going to just fall out of me. I just wondered if anyone had the same reaction. The next day I usually feel better but on the day of the instill, I feel just awful afterwards.



    **Normal is just a cycle on the washing machine**


    Wife and Sweetheart to Brent, Mom to Emily 30, and Destiny 29, and MOMMY to Jackson age 10. Granny to baby Cate, age 2 and the Queen to 3 dogs and 4 cats. Daughter to the King of Kings.
    Graphic Designer.


    Babyz Breath


    Instills- Once a week, Elmiron, Kenalog, Lidocaine, Sodium Bicarb.
    Daily Meds:

    Trileptal 600 mg for Bi Polar
    Lexapro
    Respiradal Mood stabalizer
    Baclofen
    Vicoden, 5.5 as needed for pain/stopped
    Bentyl for bladder spasms
    Urelle for burning
    Prevacid for Acid Reflux
    Lorazapem for Anxiety attacks as needed
    Ultram for pain
    Fentanyl Patch 75 mcg for pain/stopped due to skin rash
    Vitorin

  • #2
    Have you talked to your doctor about this? It could be that they need to use a smaller catheter --- when I had DMSO instillations they were painful for several hours.

    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
      OH yes..but I only see the doctor once a month but his nurse is smarter than he is..LOL. She feels so bad and she's using the smallest cathader they have. I'm one who has the severe pain during a cathader like many here and even the lidocane burns. She tries to be so gentle and I hate to make a big deal out of it but I have told her how awful I feel and she told me several patients have told her the same. She told me to try a hot bath when I get home and sometimes that will help. I've tried that and it helps while I'm IN the tub but as soon as I'm out it's back again. I can't use my Urelle the day before I go in because they want a specimen to check it and if I have Urelle in there they can't use it. I always take one when I get home but no matter, I still feel awful. I even feel nauseated, weak and shaky. I get so worked up before I have these and I'm due for a scope in a couple of weeks. But yes, she has told the doctor and they are trying to figure out what to do about the urethra. I'm also going to get a second opinion from a female URO in a couple of weeks. Maybe she will know what to do. I'm trying to spread these instills out as long as I can but so far I can't go over a week without the spasms. The nurse told me that the IC itself can make me tired and sick but the darn treatments are almost worse than the IC at this point.



      **Normal is just a cycle on the washing machine**


      Wife and Sweetheart to Brent, Mom to Emily 30, and Destiny 29, and MOMMY to Jackson age 10. Granny to baby Cate, age 2 and the Queen to 3 dogs and 4 cats. Daughter to the King of Kings.
      Graphic Designer.


      Babyz Breath


      Instills- Once a week, Elmiron, Kenalog, Lidocaine, Sodium Bicarb.
      Daily Meds:

      Trileptal 600 mg for Bi Polar
      Lexapro
      Respiradal Mood stabalizer
      Baclofen
      Vicoden, 5.5 as needed for pain/stopped
      Bentyl for bladder spasms
      Urelle for burning
      Prevacid for Acid Reflux
      Lorazapem for Anxiety attacks as needed
      Ultram for pain
      Fentanyl Patch 75 mcg for pain/stopped due to skin rash
      Vitorin

      Comment

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