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  • As we age

    I was diagnosed in 2001 with ic. I thought it was the end of my life. I was in the bathroom ALL the time. As time went on i found ways to deal with this disease. In the later part of 2002 I was in Hawaii climbing up and down hills not even thinking about a bathroom. I was in remission. Drank lots of water and took prelief. Life was good....then I had a bit of a flare in 2007 after a bunch of stress, but 2 dmso treatments, preleif and lots of water, watching diet took care of it. Then as i have aged 56 now. I had to have 2 knee surgeries and my vaginal and rectal wall collasped and that needed repair. Well I was doing well with diet. However, I forgot I had ic. Drank diet gingerale, was drinking coffee again, no preleif doing well. Then i had 6 sinus infections and was not watching what I ate at all. Was eating grapes and strawberries and BANG the ic came back with a vengance. That was September. Now it is January!!!! I finally am back to the road to remission. I am stubborn and I BELEIVE this can be cured. Well dont know about that now.
    When i had the operations and OH i had $10,000 worth of dental work done too. When i did all of that medical stuff i forgot about my ic. I didnt tell the docs or dentist.
    We have to remember as we age no matter how great we feel that we still have this thing and its important to tell doctore about our condition if we are having a procedure. And for me if i am going to have a procedure to be actively taking care of my bladder.

    Love you guys lots
    Jean Ann

  • #2
    Hi, Jean Ann ~ Thank you so much for sharing your story. I'm so sorry you're having to deal with your IC symptoms all over again after being in remission for such a long time. Remission just had to feel wonderful!!!!

    One year after being diagnosed with IC I'm finally "getting" it and I've said I've accepted it...however.....now I find myself wanting to just chuck the whole IC lifestyle and get "normal" again. I want to really "see" if the pain is from my diet. You now have me wondering if that's a good idea since the flare might take a while to appear and as you said, came back with vengeance!!! That has me second thinking my idea.

    So glad you're getting things under control and again, thank you so much for sharing.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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    • #3
      Gosh, you are so lucky that you can actually forget about the IC from time to time. How fortunate you are! And a great attitude believing you can beat this. If you do, please let everyone know. Yes, the diet is important, on good days you just want to eat everything in sight and BANG!

      Wish you much luck in your search for "the cure" but it sounds like you really have it under control and are handling it well. Keep up the good work! Jill, wife of Bob

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      • #4
        Isn't it crazy how after all this time with IC sometimes our brains try and convince us we are ok. I know I have IC, but the other night I was researching like crazy and had myself believing I had something else. I have gotten carried away after feeling good for a bit and just started eating whatever I wanted.....BIG mistake. I even had my Dr change my pain med because I thought I was so much better. I found out quickly the reason I was better was my pain med!! I have made a promise to myself, I am not messing with the meds at all! They work, I still have problems but not nearly as bad as I did when I changed my pain med.

        Glad you are starting to get your IC under control again
        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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        • #5
          thanks

          all for your replys.....i think the main thing is to have hope....I just dont want to ever forget that I have this.....it does tend to rule and control our lives and I can get so submissed in it that I forget to live too...then i live to much lol Balance thats what is needed.
          I am feeling better and better every day. i am eating correctly and getting more active.

          love you guys
          jean ann

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          • #6
            Heres a thought maybe you can put a reminder on your fridge so you can stay on the IC diet.
            <center>
            <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
            </center>

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