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  • This is all new to me

    Hello everyone....I guess I will start at the beginning. About a year ago I had a bad UTI...this was nothing new to me since I have had numerous UTI's in the past. I went to my regular doctor and got antibiotics and was on my way. I thought I would be fine in a day or two...I was WRONG! After finishing all the antibiotics I was convinced that I still had a UTI since all my symptoms where still there ( frequency, urgency, bladder pain, feeling that my bladder was overfull). I went back to my regular doctor who tested my urine and said everything looks normal, but he gave me antibiotics anyway. After I finished those antibiotics, still no relief...then I went into panic mode. I thought I was absolutely crazy and I even thought that it was all in my head. I decided to go see a urologist, and after seeing him he said that my bladder could just be very damaged from my UTI and may need time to heal. He told me to stop drinking pop, coffee, alcohol(which I never drink anyway), and chocolate. He also wanted me to drink lots of water, which I already do. After leaving his office, I felt relieved that nothing was "wrong" with me and that my bladder just needed a lot of TLC. I did exactly what the doctor said and my symptoms did calm down...but they never truly went away. I went on with my life and my urinary frequency (about 15-20 times a day) and I thought this is just my new "normal". Then this January my symptoms came back way worse than ever before and I knew something was not right. I went back to the urologist and he had me fill out a PUF questionnaire and do a voiding diary over one week and then come back to see him. At my follow up appointment he talked to me about IC. In the back of my mind I was thinking (NO NO NO NOT ME,I DON'T WANT THIS TERRIBLE DISEASE WITH NO CURE). He then suggested to me a cystoscopy with hydrodistension, I was not to happy but I knew I needed to have it done. The cystoscopy with hydrodistension was last Thursday and I definately have IC. I am doing ok since the procedure, it was extremely uncomfortable to urinate for a couple days but now I am back to my "normal". I have a follow up appointment with my urologist on Friday 3-11-11. I just don't know what to do now. I am so confused and sad.
    ~Kimberly~
    Diagnosed with IC 3/2011
    Diagnosed with IBS 1/2004
    Diagnosed with endometriosis 11/2000

  • #2
    to the ICN! Though I'm so sorry you've had the need to join us!

    Since you'd said that after following your doctor's instructions, stop drinking pop, coffee, alcohol, and chocolate, you began to feel a bit better, perhaps this is an indication that your symptoms are triggered by diet. Mine certainly are. Starting the IC diet was the one best thing I did for myself to reduce the pain I'd been in. If you haven't already found it, here's a link to the diet page: http://www.ic-network.com/diet/ There's a link on that page, "IC Diet at a Glance (Cheat Sheet)" which divides food up into categories by how well tolerated they tend to be for those with IC. I found this list very helpful.

    I have a follow up appointment with my urologist on Friday 3-11-11. I just don't know what to do now. I am so confused and sad
    Sad & Confused seems to go with the territory of an IC diagnosis. Don't worry,...for most it does get better! Hopefully your uro will discuss your treatment options on the 11th and then you'll be on your way to better days! Let us know how your appointment goes.

    Vicki
    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

    Comment


    • #3
      Thank you VickiB for the support. I will be sure to let you know how my appointment goes. I hope to get some answers. Trying to think positive.
      ~Kimberly~
      Diagnosed with IC 3/2011
      Diagnosed with IBS 1/2004
      Diagnosed with endometriosis 11/2000

      Comment


      • #4
        k your story sounds similar to mine. welcome.
        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


        • #5
          Well I went to my follow up appointment today...
          My doctor put me on Elmiron 3x a day, Elavil 10mg daily(will slowly increase to 50mg), and Vicodin PRN for pain. He also recommended Prelief if I choose to eat "trigger" foods. I have been following the IC diet and have noticed less discomfort in my bladder but my frequency is the same.

          Trying to stay positive and give the medications a shot. Just taking things one day at a time...

          Hope everyone is doing well...thank you for the support!
          ~Kimberly~
          Diagnosed with IC 3/2011
          Diagnosed with IBS 1/2004
          Diagnosed with endometriosis 11/2000

          Comment


          • #6
            Hi there,

            Sorry to hear of your diagnosis but sounds like he has you on the right track of medicines to start out with. The elavil should help with pain and maybe with frequency, if not there are overactive bladder medicines that can greatly reduce frequency if you don't have retention (unable to go). I'm on vesicare and it really has helped with that feeling of having to go so often as it relaxes your bladder so it doesn't tell you all the time that its time to go.
            The elavil will probably make you tired but most people here say you get used to it within 2-3 weeks. If not, there are others with less sedating side effects.

            I don't know what he told you about elmiron but my UG told me it will take from 1-3 months to work though for some people here its taken longer (up to 6 mo) so stick with it for awhile. If it gives you stomach upset, taking an antacid before you take it should help.

            Its good you got diagnosed so quickly and that your uro seems to know about IC. Alot of people go from uro to uro until they finally find one who will help them.

            Hope you feel better soon!
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              Thanks for the encouragement!!
              ~Kimberly~
              Diagnosed with IC 3/2011
              Diagnosed with IBS 1/2004
              Diagnosed with endometriosis 11/2000

              Comment


              • #8
                Keep us posted about how effective these prescriptions seem to be. You're not alone -- we've walked this route too. Ask questions about anything you're confused about!
                ______
                Severe IC developed fairly quickly, autumn 2010.
                So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

                - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
                - Methadone 9 ml/day
                - Instillations:
                - 40ml Kenalog (steroid for inflammation) 2 x per
                week, along with rescue cocktail of heparin,
                lidocaine, sodium bicarbonate
                - 20ml Uracyst, monthly @ $100/per
                - Depo lupron injections for endometriosis, monthly @ $88/per

                Comment

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