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  • #16
    well the percoset is working way better than it did before when just my uro prescribed it. the diludad in the iv was the BEST though.sure i will pm you.i'm also off the pyridium..they told me to stop taking it cuz i'd be on it almost a month now and it wasnt doing anything for me other than turning my pee orange. i did get a rx for the prosed..the stuff that turns your pee blue but im not gonna take fill that till i see my uro and ask his opinion. none of these that change colors really help me. the dye irritates me.
    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.

    Comment


    • #17
      and i did get my second opinion the other day before i went to the er as a last resort. the uro i went to see said he agrees with my uros diagnosis and my uro is one of the most respected drs in town. hes the only dr in town that really deals with this.etc.
      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.

      Comment


      • #18
        Hello,

        I noticed you have been dealing with urinary retention. Trust me I have been there. 24 years old and dependent on catheters at times. Sometimes a lot of stress can cause spasms to occur, and that can shut off your urethra causing you not to urinate. Right before xmas I was cathing so many times a day because I simply could not go. I had so much pain, drinking water, doing everything I should, and nothing. It is a terrible experience, and I have been there. I actually had to catheterize myself at work in a public restroom (yes it can be done-without a mirror, because mine fell in the toilet ). My doctor put me on Sanctura XR 60 mg, and it has helped with the spasms and the overactive bladder issues at times. I have not had any more episodes of urinary retention. Maybe you can ask about that?? The pain is the worst. I hate having IC pain, and am on my own customized treatment regimen. I do rescue instillations. I know that some of the meds you are on will take a while (elmiron) to work to its full potential. Also, not sure if you were told this but Percocet can cause TERRIBLE constipation. I usually take a stool softener with it to help (docusate sodium, I believe it is dulcolax, just ask the pharmacist about it). It helped when I had constipation issues, and found out it was due to the pain meds.

        If you have any questions, don't hesitate to Private message me or reply on here.

        Erin

        Try to relax and concentrate on your breathing. I hope you start feeling better. I know, easier said than done. Just keep a positive attitude (as well as you can). Trust me, I have gone through some VERY dark days. ***hugs****
        24 year old Ph.D student in Organic Chemistry

        Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

        My blog (just started):

        http://imaginenoworries.blogspot.com/

        Medications:
        Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
        Cymbalta 60mg
        Gabapentin (Neurontin) (3200mg/day)
        Zyrtec 10mg
        Xanax 0.5mg up to 3 times a day(spasms, anxiety)
        Uribel
        Macrobid 100mg (only on days when doing an instill)
        Albuterol
        Yaz Birth Control (3 months on birth control, then period)
        Pelvic floor therapy
        Valium 5 mg (inserted vaginally)
        MScontin 30 mg (3 times a day)
        Percocet 10/325mg (every 6 hours)
        TENS Therapy, CVS machine, 30 minutes once or twice a day
        Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

        *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

        Instill:

        Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

        Used to do these:

        Solu-Cortef (act-o-vial) 100 mg: 2 mL
        Marcaine (bupivicaine) 0.5 % 25 mL
        20,000 units Heparin
        3 mL sodium bicarbonate

        Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

        Comment


        • #19
          The Prosed bothered my bladder - maybe the dye or the acidity level - I had issues after using that one. I think you are right to ask your doctor about it.
          Teresa

          We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

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