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Hello,
I've been following these forums for months even before I started contibuting and I'm always fascinated by how most of you are so successful with your elimination diets and seem to be so certain about your triggers. Some even have it down to "I can get away with one slice of this but I will flare after two". There are people who seem to know what pills or supplements are making them worse. I don't know if this is a good thing or bad, but after diligently doing a food diary for eight months I have decided that none of those rules seem to apply to me. For me it is a complete crapshoot. Stress, hormones and sex seem to play a part though to what degree I don't know. Food is just too inconsistent to be a direct factor. I've done the diet by eating only the safe foods for weeks and was in constant flares. Then there were days where I ate tomatoes, spices, lemon, chocolate, soy sauce, wine, fruits; sometimes altogether, and days would pass and nothing bad would happen.
I was officially diagnosed with IC in January though I've been suffering the symptoms on and off for about 4 years. Up until last year I would spend alternating between a few bad weeks and several good months. Even though I knew about IC I was in denial that i might actually have this, and without an actual diagnosis I didn't see the need to alter my diet in any way. Let me admit upfront, I'm a food junkie. I'm a tiny girl in my mid 30's with the appetite of a hippo and a fantastic metabolism. So in those years I ate everything unimaginable including spicy foods almost every day and I never noticed a correlation with the symptoms. I would have several weeks or months at a time when eevrything felt great.
In November of last year I suddenly developed a flare that just didn't seem to end and was more painful than anything I had before. In December I got a preliminary diagnosis and got put on the diet. Nothing improved, so in Jan I got the hydro which according to my dr showed one of the worst bladders he's ever seen, with several Hunners' ulcers. He was shocked my symptoms had presented themselves so mild and scarce until that time. So I was put on Elmiron and followed the diet strictly but I saw no improvements whatsoever. Meanwhile the diet itself was making me more miserable than the disease. I stopped going out with friends because the temptation of "bad" food or alcohol was just too much. I was even more frustrated that all of it seemed to be in vain and I was always in pain, losing sleep, unable to have intimacy with my husband and enjoy my new marriage. I turned into a depressed hermit and felt like my life was over. The weird thing was once in a while for a few days my symptoms would just vanish altogether. This usually coincided with my period. In two of those days I cheated my diet treated myself to a Mexican dinner once and spicy middle eastern food on the other. Guess what happened? Nothing. Then after a few days the symptoms would just return on their own, whether I cheated the diet or not.
In April I also went through a six week treatment of DMSO. About two weeks after, I left for vacation in Turkey where my family lives.
Once I got there, I was determined to get myself out of this miserable rut. I stopped the strict diet and starting eating everything I missed in small amounts. Tomato sauce, peppers, strawberries, chocolate, yogurt...And I entered one of those good periods again, except this time it lasted all of three weeks while I was there. It was like the magic of being on vacation was working and nothing I ate was hurting me. Of course everyone then decided it must be stress causing it, though I had never felt particularly stressed before, other than being depressed about the disease itself. I decided maybe the joy I'm getting from eating the food is outweighing the acidity or whatever physical damage it might do. After I got back from vacation, I decided not to push my luck and go back to the diet. And, like a bad joke, my symptoms started coming back and I started having frequency and slight pain here and there. Nowhere near as bad as before though. I usually go about 8-10 times a day including once at night. There is pain sometimes. Usually the biggest instigator is sex, or it just happens randomly. The symptoms never start within 48 hours of a "try it" food and I have yet to establish any kind of correlation between specific foods and the flares. In the last two weeks I have also eaten pickles, bananas and soy sauce and am still flare free. I have a feeling once my period ends it will get worse again.
My doctor says my case is unique in many ways; including the diet, the discrepancy between my symptoms and my horrible hydro results (he thinks I must have a high threshold of pain) , my lack of extreme frequency, and that my pain is almost always after urination, very rarely before. I'm just wondering if there are others like me here or is my case truly an oddity?
I've been following these forums for months even before I started contibuting and I'm always fascinated by how most of you are so successful with your elimination diets and seem to be so certain about your triggers. Some even have it down to "I can get away with one slice of this but I will flare after two". There are people who seem to know what pills or supplements are making them worse. I don't know if this is a good thing or bad, but after diligently doing a food diary for eight months I have decided that none of those rules seem to apply to me. For me it is a complete crapshoot. Stress, hormones and sex seem to play a part though to what degree I don't know. Food is just too inconsistent to be a direct factor. I've done the diet by eating only the safe foods for weeks and was in constant flares. Then there were days where I ate tomatoes, spices, lemon, chocolate, soy sauce, wine, fruits; sometimes altogether, and days would pass and nothing bad would happen.
I was officially diagnosed with IC in January though I've been suffering the symptoms on and off for about 4 years. Up until last year I would spend alternating between a few bad weeks and several good months. Even though I knew about IC I was in denial that i might actually have this, and without an actual diagnosis I didn't see the need to alter my diet in any way. Let me admit upfront, I'm a food junkie. I'm a tiny girl in my mid 30's with the appetite of a hippo and a fantastic metabolism. So in those years I ate everything unimaginable including spicy foods almost every day and I never noticed a correlation with the symptoms. I would have several weeks or months at a time when eevrything felt great.
In November of last year I suddenly developed a flare that just didn't seem to end and was more painful than anything I had before. In December I got a preliminary diagnosis and got put on the diet. Nothing improved, so in Jan I got the hydro which according to my dr showed one of the worst bladders he's ever seen, with several Hunners' ulcers. He was shocked my symptoms had presented themselves so mild and scarce until that time. So I was put on Elmiron and followed the diet strictly but I saw no improvements whatsoever. Meanwhile the diet itself was making me more miserable than the disease. I stopped going out with friends because the temptation of "bad" food or alcohol was just too much. I was even more frustrated that all of it seemed to be in vain and I was always in pain, losing sleep, unable to have intimacy with my husband and enjoy my new marriage. I turned into a depressed hermit and felt like my life was over. The weird thing was once in a while for a few days my symptoms would just vanish altogether. This usually coincided with my period. In two of those days I cheated my diet treated myself to a Mexican dinner once and spicy middle eastern food on the other. Guess what happened? Nothing. Then after a few days the symptoms would just return on their own, whether I cheated the diet or not.
In April I also went through a six week treatment of DMSO. About two weeks after, I left for vacation in Turkey where my family lives.
Once I got there, I was determined to get myself out of this miserable rut. I stopped the strict diet and starting eating everything I missed in small amounts. Tomato sauce, peppers, strawberries, chocolate, yogurt...And I entered one of those good periods again, except this time it lasted all of three weeks while I was there. It was like the magic of being on vacation was working and nothing I ate was hurting me. Of course everyone then decided it must be stress causing it, though I had never felt particularly stressed before, other than being depressed about the disease itself. I decided maybe the joy I'm getting from eating the food is outweighing the acidity or whatever physical damage it might do. After I got back from vacation, I decided not to push my luck and go back to the diet. And, like a bad joke, my symptoms started coming back and I started having frequency and slight pain here and there. Nowhere near as bad as before though. I usually go about 8-10 times a day including once at night. There is pain sometimes. Usually the biggest instigator is sex, or it just happens randomly. The symptoms never start within 48 hours of a "try it" food and I have yet to establish any kind of correlation between specific foods and the flares. In the last two weeks I have also eaten pickles, bananas and soy sauce and am still flare free. I have a feeling once my period ends it will get worse again.
My doctor says my case is unique in many ways; including the diet, the discrepancy between my symptoms and my horrible hydro results (he thinks I must have a high threshold of pain) , my lack of extreme frequency, and that my pain is almost always after urination, very rarely before. I'm just wondering if there are others like me here or is my case truly an oddity?
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