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  • new to IC

    For years I have had "UTI" episodes, there was rarely any infection found. I did have a kidney stone once according to a scan they did... one of the tubes from the kidneys was inflamed. I have been put on antibiotics regardless if there was infection found, because I had been taking AZO and they said that it can mask infection.
    I remember a few times that when I had an episode when I hate tomatoes it gave the worst burning pain. Passed it off as the juice was irritating my UTI.

    I have had pain on and off in the urethra. Passed it off as maybe soap irritated it.
    Then about 2 months ago I had the WORST pain... I thought for sure I was having a major kidney stone. urine test came back clear. I couldn't produce much urine to get a good test. So I had to come back early next morning for another test. It also came back clear. I went to the ER for an ordered Xray to see if there were any stones, it also came back clear.

    The next few days, I took the meds the Dr prescribed, tarydol [sp] and predidan [sp]
    (basiclly AZO in prescription strength), and I had a reaction to the tarydol... it made my heart beat irregular.

    I had been drinking Cranberry juice like it was going out of style. I quit drinking it once I started my research on IC, and that calmed allot of my problems too.

    I took her info about IC, and a list of all my symptoms and two other possibilities of what could be causing it. One was a pinched nerve in S1 - S2 I had x-rays of my spine done, but I haven't heard anything about it yet.

    So she said she was going to treat this trouble like it was IC, and if I continue to have trouble then she was going to send me to a Urologist. I don't have insurance and it's difficult to see a specialist without insurance.
    So She put me on oxy - something or another.

    I have been taking Prelief before, or with meal that have spices, tomatoes, or acids... if I forget I grab the Tums. Both seem to help calm the burning.

    I still have trouble starting to go...
    I have noticed that I have trouble going #2. It feels like I have to go, and I to the bathroom and it HURTS to push. I mean tears kind hurt. So I try to relax, and if I can't then I give up and wait awhile.
    This IS NOT like me! Usually I am TOPS 4 mins in and out.
    Up until this pain...
    it hurts everywhere when it is in a flare...
    I slept on a heating pad for weeks... it is not as bad now...

    I take regular Ibuprofen, or Aleve, for some of the lighter pains... and 800 mg IB for the Bad pains.

    This is SO miserable... and my husband has been clueless... I say I am not feeling like eating taco bell, and he'll ask why and I say because I am in pain today... and he says "tacos make you feel worse?"
    I try to be patient with him... He IS doing better now though... He tells me that I have had one bottle of sprite already... I don't need another, or I shouldn't drink the tea that I am wanting... It's a process, just like learning to deal with the insistent back pain, and muscle spams from FMS.
    I thought FMS was bad enough... :|

    Now I am reading everything I can find and have printed out the diet list, and I am trying to stick to the better food... but it is SO hard... I am glad prelief gives me Some Relief! LOL

  • #2
    Welcome the the ICN! Sorry that you have IC, but glad that you found a good support forum like us. One thing that I want to mention that you might try, Miralax should help the constipation from the meds. The oxy something is probably oxybutinin and it will dry you our and cause that problem. Miralax works wonders for me and doesn't irritate my IC at all. Also, some people with IC find that ibuprofen causes them trouble so you might try something else. Be careful with too much tylenol as well as it isn't too good for your liver if you take it too often. Sounds like you are on the right track though. I wish you the best and hope you continue to do better.

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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    • #3
      i feel exactly as you do constipated trying to go number one and two is so uncomfortable. i told my dr the other day i felt constipated in the bladder...having to strain to pee sucks.
      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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