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Well..I was right. I have IC

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  • Well..I was right. I have IC

    Hello Friends,

    Just as a thought, I have IC. My doctor wnet ahead and did the Parson's today. I experienced SEVERE pain when they put the potassium solution in. I was crying. He started me on Elmiron and also did the steroid solution to stop the inflammation. I will have these twice a week. He didn't give me anything for pain and basically ignored me when I said my Norco's don't cover the IC.

    I am so frustrated and scared. I feel that somehow I caused this myself thru bad diet, too much pop, too much tylenol/advil or who knows

    I would love to get to know some of you better. Please visit my myspace link..
    www.myspace.com/mimimama

    I was supposed to leave for Florida for a vacation with my family which I am now goingto postpone due to the upcoming treatments. Do these treatments help at all? What about the Elmiron? Should I inquire about a referral to a pain management doctor> This may sound premature but I have suffered so much this week..I need some relief and compassion from someone. How long after your initial diagnoses did it take to get some pain relief? Is this normal for the doctor to be so passive about this condition?

    Best,
    Mimi~

    Currently battling:
    Migraines
    IC
    Panic attacks/Anxiety Disorder


    Current Treatments:
    Pain Meds and Anxiety Meds
    Gentle Physical Therapy
    Yoga
    Heating Pad~my best friend
    Lots of hot baths w/ Epsom Salts & Baking Soda
    Tens Unit
    Prayer

  • #2
    Hi Mimi,

    Firstly, welcome to the boards. You will find a lot of helpful info here - be selective on what you choose to take from the advice!

    You need a doctor who will work with you with various symptoms IC gives you - every person is an individual. Some people need heavy duty pain meds, while some, like me take a bunch of oral meds and dmso instills.....if you are not happy with your doc's bedside manner - FIND ANOTHER ONE PRONTO! You need to feel comfortable with your doc and have a mutual respect thing going on.....right now there is no cure for IC, so your doc needs to make you feel physically comfortable......

    Get the IC Survival Guide book - take a look at the IC shop and start educating yourself on self help strategies. Especially look for the newbie survival link.....

    Hope you find what you need here, and feel better!

    Beth
    IC diagnosis 1999
    Meds: Elmiron
    hydroxyzine hcl
    DMSO as needed
    valium as needed
    librax 3x day

    TENS therapy



    Thanks to all on the boards - YOU have helped more than I can say!



    A person's true wealth is the good he or she does in the world.

    Comment


    • #3
      Beth,

      Thank you so much for your reply. I am trying to stay positive, this isn't a death sentence or cancer. I just can't wrap my mind around having to feel like this indefinitely.

      My husband says I need to call my DR everytime I am hurting so that he is very aware. I am not good at being the squeaky wheel. I will see him again on Monday for my instill and we will see how I feel.

      I have been down this route before with my migraines. Just wish DR's would listen and try to put themselves in the patients shoes.

      Again, thanks for the advice. I will take it to heart.

      Blessings,
      Mimi~

      Currently battling:
      Migraines
      IC
      Panic attacks/Anxiety Disorder


      Current Treatments:
      Pain Meds and Anxiety Meds
      Gentle Physical Therapy
      Yoga
      Heating Pad~my best friend
      Lots of hot baths w/ Epsom Salts & Baking Soda
      Tens Unit
      Prayer

      Comment


      • #4
        Well to the boards. I'm so sorry that you got a diagnois of IC but happy that at least you know what it is.
        A lot of uro's don't seem to want to handle the pain aspect of IC, at least not with pain meds. My uro was very willing to write me an rx for vicoden before I had my hydro. After my hydro he gave me some for post op but then didn't really seem willing anymore.
        I asked my GP if he would handle my pain meds because there aren't any pain managment dr's in the whole county where I live and I just can't afford another $25 copay for an office visit as well as the cost of gas to get there and back.
        See what he's willing to do for you and what he would like another dr to handle. Hopefully he'll be willing to give you a referral to a pain clinic if that's what you need.
        Hope you get some relief soon.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          Hi Mimi,
          First off, while you may have IC indefinitely, you will not have to be in pain indefinitely. I was very very sick when I got IC and today, the majority of my days are not just ok, but good.

          IC is a pretty individual disease. There are many different treatments available & different combinations that have helped us. You have not yet even scratched the surface of what is available, so no need to despair. You have many options for relief. What is time consuming & challenging in the beginning is having to test them out to see which will be the ones for you.

          Here is a link to the IC diet. It has helped many IC patients reduce their symptoms, and for me, it is what drops my IC to a level that the medicines will work. If I don't follow the diet, nothing is strong enough to manage the IC. It is important to become a label reader to manage IC, many foods that look bland, if they have acidic additives (citric acid, sorbic acid, MSG, etc) can be problematic. You'll want to try the diet at least a month to reduce irritation to your bladder. http://www.ic-network.com/handbook/diet.html

          Here is a link to the Patient Handbook. As you start to consider treatments, it is often helpful to look them up here. There are also lots of self-help strategies in these links. http://www.ic-network.com/handbook

          There is a "New Patient Kit" available for sale in the ICN shop. It is a helpful collection of books & resources to help you manage IC. I got it when I first got sick & still refer to those books frequently. If you can afford it, it's a good "investment" in your health care.
          http://www.icnsales.com/KITS-our-bes...-p-1-c-40.html

          Hang in there. 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!

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