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  • Last instill on Monday

    I have my last instill on Monday. I am better than I was when I first walked in the doctors office but....the bladder is ok until I do activity, like some gardening or laundry or anything like dusting where I'll be active for a while then I start to ache in there. But..it is better and of course since I"m still on pain meds I wouldn't know what it would feel like without them.

    My big problem is the urethra and the urinary tract itself. I still feel like I have broken glass in me when I go, and even when I'm just sitting I have these horrible shooting pains. The nurse that does my instills says I'm just so inflammed...what the heck can they do for this? I'm taking Urelle but it's not working that good. I've taken Uristat and it does nothing. I'm just afraid after my last treatment they will cut me loose and then what do I do.

    Also..calling all ladies...I have been on this IC diet, about 1000 calories a day now for a month and a half and not even lost 1 pound. Are there certain medications that keep you from loosing weight? I mean I can't excersize so that does limit things but still...you'd think I'd have lost some weight with this diet, no pop, no sugar....water only to drink which is VERY hard for me. I miss my coffee but decaf...ewe..yuck.

    Anyway, my main question is, what can they do for the urinary tract when it wont stop burning? I'm taking warm sitz baths like the doctor recommended. I've even tried an ice pack down there for the swelling but that's how I feel swollen and it throbs so hard. Any help appreciated!



    **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
    Hi Cindy,
    You might want to consider physical therapy if your pain is made worse by movement. I've done all external pelvic floor physical therapy & it's helped me a lot! I'm also not sure why you're stopping the instillations. I do "rescue instillations" a few times a week up to daily if flaring & they are a lifesaver!

    Yes, meds can cause weight gain. I'm not sure about the ones on your list, but the Elavil I take caused me a 35 pound weight gain. I've lost 13 pounds, but it's a battle, where losing weight was never hard before. The other thing is, I don't know how long you've been sick, but inactivity causes muscle loss which slows our metabolisms. If you can get moving again, even just walking and/or yoga, that will help over time. It's just much slower than when we were active.

    Hang in there, there are still lots of things to try.
    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
      Hi!

      The reason why I'm stopping is that I've completed the 5 week series in the installations. I dont know what they will do next. I will NOT have a hydro/destention so they might do more instills, I just dont know. I used to be a cop until I injured my right shoulder. 8 surgerys later, fibro set in, bi polar came to light as well as depression. I was very functional but I couldn't work anymore and draw disability. I also had 3 surgerys on my left knee because of a torn meniscus and arthritis. A new knee is probalby just around the corner. I do try and stay active, I dont just stay in bed like I'd like to do. But when I do get active I get some pretty strong spasms which make me feel as if I have to go NOW, of course there's nothing there but they are painful. I'm not opposed to physical therapy or more installtions. I just dont know what the doctor has planned yet. He's never done a scope yet diagnosed me with IC. I've never had any real tests done to see whats going on up there. The urinary tract is scaring me because my panic attacks are increasing and they usually come on when I'm burning or hurting. Nighttime I'm still getting up around 5-6 times per night having to go and then I get frantic. I take lorazapem for it but I hate being a zombie. I try to walk in the park with my husband and son, we live right across the street from a park with walking trails but I never get very far before I have to come home.

      What exactly is this potassium test I hear so much about? I also hear that if they give it to you and you have enormous pain, that means you have IC? I dont know if I want to go through that either...pain is not easy for me, especially after all the surgery I've had and I only touched on it briefly. There have been many others for other little problems that turned into big problems because of the surgery. I have a deformity of the epigoltis (?) and I cannot be intubated normally. I have to have fiberoptic scope down the nose and I have to be awake for that. It's very ugly and hard to get through..

      Anyway, I dont want to write a novel here but basically I dont know what they will do next. I just assume they will stop them and see how I do...
      Last edited by Cindy B; 04-28-2007, 07:43 AM.



      **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


      • #4
        I would hate to think that my MD would stop and let me suffer with pain. I just can't believe that would happen 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


        • #5
          I dont think he will leave me in pain....I just meant I dont know the next step. Maybe I'm not communicating well here..LOL



          **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


          • #6
            There are a lot of options to explore. I'm glad to hear I "read" wrong.

            We have 2 things in common. IC and Knees. I just had total knee replacement. I severed my ACL in 1968 when I missed a vault in gymnastics. So I have honsetly lived in knee pain most of my life. My IC didn't hold a candle to my knee pain. But I can say TKA was the best for me. IT IS A VERY DIFFICULT SURGERY AND RECOVERY I don't care what anyone says. I hope when it comes to TKA you will remember the link in my signature for the knee forum (I have had 6 knee surgeries in the last 8 years).
            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
              hey!! i just wanted to let you know that i also have that horrible glass like...burning type feeling sometimes..and it hurts soo bad i agree i cant even sleep....what helps me is i get a bath and also i have a interstim so i turn it up higher and for some reason that helps me...I am also like you and w/ activity my pain gets worse...so far i have no idea what to do about that...hugs!!




              Judge me and I'll prove you wrong!!


              http://www.babiesonline.com/babies/a/alexisriley

              Comment

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