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Newly Diagnosed 6 mos ago....Going Crazy and Need Help

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  • #1

    Newly Diagnosed 6 mos ago....Going Crazy and Need Help

    I have always had bladder infections, uti's, yeast infections as far back as a teenager. I also suffer from kidney stones with a bout at least once or twice a year. Drinking cranberry juice and lemonade were my remedies for the stones....SURPRISE....you now have IC!!!!!! All those years drinking acidic juices and i thought i was helping myself. I am now in constant pain, home bound, barely eat anything, depressed and confused. I had a severe reaction to Elmiron and nothing else works like vessicare, the stupid pill that turns your pee orange or blue. My doctor refuses to give my any pain meds. How many of you know the feeling of being treated like you are a drug addict????
    My doctor keeps pushing for invasive surgeries. I lost my job a year ago, had to file bankruptcy and foreclose on my house. I have no medical insurance and need a place to live in just 4 weeks. I am a wreck. I dont sleep either. Marshmallow root tea and peppermint do nothing. How much of that do you have to drink? The hopelessness, the isolation,the depression is all too much. If i have even 3 minutes of no pain, I am thanking God like a crazy girl.
    Even my faith seems to be at an all time low. I am open to suggestions from all of you out there that KNOW what it is like to live this way. What to eat? What to take the pain away?
    Thank you.
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  • #2
    You're not alone

    Hi Jreed, I am a newbie too. Diagnosed September 2010. I understand and feel for you. I am had my share of meltdowns, and just thinking I am going crazy. IC has been life altering for me. I am in pain everyday, some days are worse than others. I was getting a UTI about 1x a year for the past 3 years. Had my share of yeast infections. Phenazopyrid (different pill that makes your pee orange) didn't help this time when I thought I had back to back UTIs. And antibiotics didn't help, because my urine cultures showed no bacteria. My uro at the time started me o. Oxybuton, which helped a little. I had the cystoscopy with hydrodistention, 6 bladder installations and it didn't help. Been taking norco for pain for 5 months, which I hate. Warm baths and a heating pad are how I cope. And still taking oxybuton and started elmiron 3 weeks ago. Just saw an uro-gyno specialist, and she seems to think physical therapy will help me. I hope you get the help you need. I hope you start to feel better soon, or at least have some good days.Hang in there, because you are not alone.
    In my thoughts & prayers

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    • #3
      IC diet

      Also, this IC Network website has so much good information which includes an IC diet. I drink nothing but water, and try to stay away from acidic foods.
      Good luck!

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      • #4
        hey jreed welcome to the forum. i know how it feels where it seems like everything in your life is going wrong and nothing seems to be going right and then when you add a health problem on top of that like this it is enough to make you feel crazy. alot of people with IC including myself see a counselor or are on anti anxiety,anti depressant pills. they make life feel worth living for me.and my pain pills of course.find another dr if this one wont give u pain pills. u NEED those pain pills. look for a urologist.the health department or some ERs have to treat you regardless of your ability to pay. good luck i will pray for you
        Newly IC diagnosed as of February 2011.

        Medications I'm on that seem to work:
        Zoloft- one once a day
        Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

        Failed Meds:
        Elmiron-after 4 months,digestive side effects got to be too much
        tramadol-allergic
        DMSO treatments(5-6)
        probiotics

        THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
        AROMATHERAPY-candles,incense
        Village Naturals Aches and Pains Peppermint Bath Salts
        Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

        ACUPUNCTURE/HERBS
        Significant pain relief so far.

        MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

        Add me on facebook Angela Hasic

        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        Lord, make me an instrument of your peace;
        where there is hatred, let me sow love;
        when there is injury, pardon;
        where there is doubt, faith;
        where there is despair, hope;
        where there is darkness, light;
        and where there is sadness, joy.
        Grant that I may not so much seek
        to be consoled as to console;
        to be understood, as to understand,
        to be loved as to love;
        for it is in giving that we receive,
        it is in pardoning that we are pardoned,
        and it is in dying [to ourselves] that we are born to eternal life.

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