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  • Newbie here!

    Hello everyone, I'm Cindy from Kansas City. I have 3 children and a wonderful husband who is very supportive. I have been diagnosed with IC and am scheduled to have a bladder installation tomorrow with Elmiron. I have no idea what to expect, no one told me what was going to happen and I wondered if someone could just give me a rundown on what this is and if it's painful or what.

    I would be most grateful,

    Thank you,
    Cindy



    **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


    This was such an informative and compassionate post - very helpful for someone who has not had instillations before. Fear of the unknown can be so overwhelming - having information like this sure can help ease that fear. ~vm

    Hi, Cindy, welcome to the ICN! You will find a ton of information here. There are a lot of posts that describe the instills, but they're all over the place so you might not have found them yet.

    I can tell you about the procedure, anyway. You get in stirrups like a regular gyn exam, and the dr. or nurse mixes a cocktail of meds that usually includes lidocaine or marcaine, to numb the bladder from the inside, and also includes the active substance. I guess in your case that's the Elmiron. Different doctors use different combinations of meds, but yours sounds perfectly reasonable to me. Then, they put a lubricated catheter, usually a very small one, in through your urethra, and drain out any residual urine. Then through the same catheter, they push the medication cocktail into your bladder. They usually ask you to try to hold it in there for a couple of hours, if you can. If you can relax, the insertion of the catheter does not hurt, or maybe only a little. Your bladder should feel good right away if they use a numbing agent. You should ask them as they're putting it together, "Are you using lidocaine?" Or they may tell you.

    It is not at all scary. My husband now does them at home for me, and a lot of women do them on their own. But we had to do them in the dr. office first, so they could get to know us and decide if we were good candidates for home instills.

    Some people get instills every six months; some people do them three times a day. I recently started doing them twice a week (was doing every few months before that) and am having dramatic improvement.

    So, to sum up, it's normal for IC treatment, it should not be painful (just try to relax your muscles as much as you can), and the entire amount of liquid instilled is only a couple of fluid ounces. So it will not stretch your bladder.

    I know any new procedure is scary, just rest assured that there are literally thousands of us on this forum who have been through it, and it's really going to be ok.

    Probably others will chime in with details I've forgotten, or with better advice about how to calm yourself ahead of time and what to watch out for. I just want to get the point across that you don't need to worry.

    Good luck with it, and be sure to report back and let us know how it went!

    BTW, Cindy, which Kansas City are you in? Is your doctor any good? I have a friend in NW Arkansas who is looking for a dr. who knows about IC, and I know she'd be willing to travel a couple of hours if necessary. Thanks!
    Last edited by vm; 04-01-2007, 01:03 PM. Reason: add award
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn
    ___________________________________________________

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


    On the Beach with IC

    Comment


    • #3
      Cindy...

      I have never had one done with Elmiron so I cant help you on that,
      But I just wanted to welcome you to the ICN.. Im sure someone else will chime in and give you the info you are looking for
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


      • #4
        Thanks for your help, I do feel better now. I was afraid that they try to stretch your bladder to full capacity and right now, I cannot hold any urine what so ever. The bladder spasms get so bad they double me over and I just have to go constantly. My doctor put me on Detrol LA but that is causing me trouble in going. I spend 5-10 minutes in there trying to relax and go and finally do but I'm not so sure I like that medicine. Right now I'm on the Fentanyl Patch, 50 mch and Ultram and Bentyl. It seems to help because if I dont take it I am in bed in terrible pain. My bladder feels like it's "loose" and it sloshes around when I walk. I always have bee sting pain in he urinary tract. This all came on after I was given a mistaken medication for depression. I had been on 50 mg of Lamictal which wasnt really doing much.(I am BiPolar 1) I called my doctor and the nurse called back and said he wanted me on 600 mg of Lamictal. Well I questioned her several times until she got irritated at me so I started taking it. 3 days into it I starting having all these symptoms, burning, bladder pain and spasms, fever, I started itching all over so I called the doctor and he was freaking out because he told the nurse to call in a different medication and she misunderstood him. Basically I was being poisoned and even after I stopped the meds all the bladder problems are still there. Before that, I had never had an infection or any problems at all with my bladder. I went to one urologist who did the "scope" and didnt find anything, told me I had Overactive bladder and sent me home. Since I'm in Kansas City, Mo, I started going over to KU medical center which is one of the best teaching hospitals in the country. My doctor now seems to really know what he's doing and I have this installation tomorow. The urology clinic at KU Med is one of the best. Thank you again for making me feel much more at ease about this procedure tomorrow. I'll let you know how it goes.

        Hugs,

        Cindy



        **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


        • #5
          Wow! Carolyn's description was so complete, that I dont really think that I can add anything else. Bravo, Carolyn!

          I also do them at home now, but did them for a long time at my Drs. office. Like you, I was scared to death at first. But, truly it is nothing like being cathed in the hospital. Whenever I was cathed in the hospital, the catheters were HUGE, (usually a 16F), but for the instills, they use very small ones. Mine are a 5F, (less than 1/3 of the size of the ones used on my at the hopstial!) Believe me, size matters! Also, they can lube the catheter with a topical numbing agent, Lidocaine, to keep it from hurting. One other thing that helps is to bear down and "push it out" during insertion, )kind of like when you are pushing for a bowel movement.) It sounds counterintuitive, but it really helps!

          Please let us know how it goes for you tomorrow. We will all be rooting for you!

          Hugs,
          Amy

          Comment

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