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Trying new things...

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  • futurehope

    I can totally relate to what you are saying about eating. I'm in a bad flare right now, one that has prompted me to go get a urine culture at my uro's office. The results won't be back until Monday.

    Until then, I dread eating as I know that anything hurts almost immediately after I eat. My favorite time is in the am and before I've eaten. And I love eating, when it doesn't cause distress.

    I'm also going to see Dr. Chai at the U. of MD at the end of June.

    Until then, a long way off, I endure by avoiding all unnecessary meds and supplements and cling to the belief that nothing stays the same.

    You're not alone. I also feel bad on top of everything because my sleep is disturbed. But I do know this is not forever. Hang in there.

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  • ICNDonna
    Some ICers do flare from some antibiotics so that's a possibility. Please also make a list of all of the supplements you've been taking --- there are definitely some supplements that can be a problem --- and your doctor needs to know ALL of the medications you've been taking.

    When I was first being diagnosed, I lost a lot of weight because I simply wasn't hungry. I did get over that and now would love to lose about 30 lbs.


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  • Margot62
    started a topic Trying new things...

    Trying new things...

    I think I've begun to notice something after trying to put myself into remission after a really painful and difficult first flare.

    My bladder doesn't want anything in it. Plain and simple! I feel best in the morning after seven or eight hours of not putting anything into my body. As I begin to add things during the day, I go through varying amounts of pain.

    Does anyone feel that way when they are in a bad flare----that they'd just assume not put ANYTHING in their bladder? Do you think if we didn't have to eat and drink our bladders would heal a lot sooner because it could do its work without any interference? Should our goal be to not eat or drink as much, giving our bladders a better shot at healing? One thing I did was to stop the new supplements I was taking. I was really eager to try some new supplements for this, but found I wasn't tolerating them during this flare. I thought maybe I should wait until I heal a bit more and then try them again. It just seems like my bladder needs a big break! A huge time out.

    I'm also finding that right now I'm not tolerating very much--I get pain from just about everything I eat except water and toast and pears and potatoes. Believe me, I'm not trying to starve myself--I'm trying to keep the calories up and am drinking lots of water, but I am starting to subscribe to the theory that I just need to chill out and give my bladder some time to heal.

    One more question--tomorrow I see the doctor to talk about what's going on. This all started in earnest when I went to see him and he suspected I had IC because of negative cultures in monthly tests for UTI's (after years of real UTI's). He gave me a new antibiotic and Prosed and then wham! The worst week of pain in my life began with spasms, shooting pains, the worst burning ever, etc. I still think the antibiotic put me over the edge and I am trying to recover from it. It might be important for him to understand that he has to be careful when subscribing new drugs to people who might have IC. Has anyone else had this experience? A flare from an antibiotic? I'm still trying to understand what happened here! I look back and am so confused about this experience.

    Thank you so much for all of your support. This site has been a life saver!