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Help! Worse symptoms today!

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  • Help! Worse symptoms today!

    I posted this in the diet section... but I didn't know where to post it so I could get help! I'm desperate to figure out what to do...

    I tried the IC diet before and didn't notice an improvement in symptoms, so I added things back (except for art. sweeteners, caffeine, tea (sniff sniff) and juice). I was put on Elmiron almost 2 weeks ago and about a week later, I was feeling a little better (didn't want to think it would last, afraid to jinx myself by saying that). I was feeling alright for a few days (still peeing a lot, but sleeping more and the urge wasn't as strong, constant, but not as strong). So... I went out to eat, pasta with red sauce with a piece of chocolate cake to celebrate something... not a problem. The next night a friend made dinner (tacos with mild salsa and sour cream) and then for dessert she had a chocolate fondu (strawberries and bananas). I was fine. I slept well that night (woke up around 6am feeling nautious though... but I was a little constipated when I woke up and after that passed I was fine). Then the next morning I woke up with a headache. I took my Elmiron with water. Waited and hour and took some tylenol. I had a protein shake and some oatmeal. Then a little later I had some strawberries. An hour after that I was peeing my heart out (getting nautious, hot flashes, sick feeling). I haven't had that strong of an urge in several weeks (this was aweful!). N

    Now... what did it to me? I do feel like I was doing better, then out of the blue something hit me. Was it the Tylenol because strawberries and other "trigger foods" were fine the days prior? I was taking a Centrum vitamin for a few days too (not today yet). Did they accumulate? The kindeys filter pretty quickly, so I am guessing it was the Tylenol and not some build up effect. I'm doing better now (still have to go a lot, and little bits at a time), but not as urgent/sick feeling as earlier today (lasted a good 3 hours like that). In January/Feb, I was like that 24/7 and everyone that saw me said, "Jeeze, you look terrible". I guess control over symptoms and more than tid bits of sleep is helping my appearance.

    I see a uro-gyno next week that knows more about IC than anyone in town.

    Thanks for any insight! I want to avoid this again! I have 4 final exams next week and a 2 hour commute to a different city and can't afford to run into this problem! I was driving to the Florida Keys back in November and that was TORTURE! I noticed that week it was the start of my problems, but it wasn't as bad as my worst was... this today was aweful! At least I didn't have any pain... it's just that "gotta pee" every second of the day... but it didn't start until I had the strawberries... but it seems like that would take longer to digest... while the Tyelnol was just starting to kick in when it all started...

    When you eat something bad that makes you flare, do you "cleanse" your system by doing bland food/water or do you just stick to what you eat normally?
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]


  • #2
    One of the first things my urogynecologist told me about IC was it is totally unpredictible. My treatments have IC symptoms undercontrol. After 3 years I have had no additional bothersome symptoms appear but that doesn't mean tomorrow something might pop up.

    Unlike a lot of ICers I am not food sensitive. You are fortunate you are seeing an IC specialist. It seems many ICers have trouble finding anyone to diagnose IC let alone actually treat it effectively.

    Good luck.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation:

    Institute of Female Pelvic Medicine (J. Dell, My MD)
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas


    • #3
      What happens to me is that if I have a trigger food, I may get away with it, but if I have more trigger foods on the following days it catches up with me.

      I finally learned that it's much, much easier to just stick with my diet.

      Warm healing thoughts,
      Stay safe

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      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        I think Donna's right. I was really stubborn about the diet for a long time; I kept saying, "Oh, a little coffee doesn't bother me..." and I really didn't think it did. But then I'd have a little chocolate, or a little tomato sauce, or whatever, and wonder why I wasn't getting better. When I finally accepted the diet as part of my life, I began an upwards swing in how I felt (not a completely straight line, but definitely a trend), and I also found that sticking to the diet is not that hard. It's the going back and forth that's harder.
        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
        Wishing you happiness and good health, and all the best out of life.

        Peace, Carolyn

        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

        On the Beach with IC


        • #5
          Born2Swim - I hope you will be feeling better soon. You are so young to have to be dealing with all of this. You should be able to have fun with your friends and study for your tests without having to worry about your health. I am keeping you in my thoughts and sending healing energy...linda
          Sudden onset of UTI like symtoms on Dec 27, 2006.
          Diagnosed with IC on March 12, 2007.
          Current Meds: 50mg Elavil
          "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown


          • #6
            Well, I am positive that the flare that sent me screaming to my gyno office (they were treating me for vulvar vestibulitis/vulvodynia) was due to strawberries.

            When I was only being treated for vulvodynia, I had actually wondered if using strawberries in my yogurt smoothies was a link to increased vulvar pain.

            Well, I bought some fresh strawberries (a quart) and ate them over a period of 3 days in February. On Valentine's Day, I was in so much pain and could not stop feeling like I had to pee and that I could not empty my bladder.

            I went to them and told them what was going on and they insisted it was the vulvodynia acting up.

            I started doing research and found out IC was commonly linked to vulvodynia. Knowing my Dad (one of the few men) has IC, I called him.

            He gave me all his materials, etc. given to him by the doctor. I insisted once my symptoms started to subside that the gyno office do a PST test.

            It was excruciating!

            To this day, I don't think I will ever eat a strawberry again because it was the only thing out of range of my regular diet that I had eaten.

            I am doing the IC diet religiously. I am in Phase II right now, where I've stuck to the foods in the "usually ok" column and I have felt so much better. I have had 4 flares. Each of them I believe I can attribute to a food I've tried or intense exercise. Sex also usually leaves me in pain for a while.

            I am not at the point yet where I don't "FEAR" food. I am so afraid to eat something that is going to cause pain, that I just don't think it is worth it.

            It is so much easier following the diet than coping with the pain and the emotional setbacks.

            Also, to add, when I get in a flare, I cut back to the Elimination Diet mentioned in Confident Choices, the book.

            Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

            Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

            IC Diet: Very diet sensitive, esp. to spices.