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Is there anyone here who's not diet sensitive?

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  • Is there anyone here who's not diet sensitive?

    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?
    Last edited by honeymuffin; 06-28-2011, 11:46 AM.

  • #2
    I should add I'm still on Elmiron and use Prelief religiously.

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    • #3
      The same for me. Only a few things really affect the bladder. Bananas are a no and I found there is just one kind of bottled water I can drink. City water is a big no and so is well water but yet I can drink coffee. I have found light food works better but not sure if is due to the IBS. Heavy foods seem to make my stomach feel like lead but I didn't have any success with the IC diet either.

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      • #4
        Same here. I'm not diet sensitive and my pain is always worse after urination. And I don't have extreme frequency either. Also, I don't have 'flares', its more of a constant pain which gets worse after urination.

        Comment


        • #5
          I don't have as many food triggers as some do, but I absolutely have foods and drinks that I know will cause a flare. At the time I was diagnosed (1975) not much thought had been given to a diet connection, but I found out only own that some foods and drinks are a problem. And all of my triggers are listed as problem foods on the IC diet list.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.
          [3MG]

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

          Comment


          • #6
            I'm not diet sensitive either. My symptoms come and go with no rhyme or reason. I've been dealing with this mess (that came on out the blue) for 8.5 yrs now and have tried the diet elimination on several occasions with the same results: no change.
            (\__/)
            (o.O )
            (> < ) This is Bunny. He's on his way to world domination.

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            • #7
              Thanks for the replies! It's nice to know there are others like me. Honestly after months of reading articles and comments telling me the diet is the most important and effective thing in battling IC, being on my best behavior and giving up 80% of foods and drinks I used to enjoy before, and then seeing no improvement in return was getting really frustrating.

              I think the best advice I got was from a doctor I saw while I was on vacation : " Don't try to fight and beat this disease. Learn to live with it. The most we can hope in most cases is to improve the quality of the patient's life. If the measures you take against it are making your quality of life even worse, then we're not really achieving anything". That made a lot more sense to me than "If I give up these 50+ foods for the rest of my life I might pee less and hurt less so obviously that's the sensible and right thing to do."

              @waterflow - Which water do you drink? I still wonder if the water in Turkey had something to do with my sudden improvement. I drink only Arrowhead and Fiji here.

              @ healingthoughts - Have you found any explanation while your pain is always worse after like mine or a treatment that works? My pain few months ago used to feel like a knife shredding my bladder and would last up to an hour everytime I went to the bathroom. Nowadays when it happens it's some minor discomfort that goes away after 5-10 minutes, thank god.

              Comment


              • #8
                @Donna - Do you always experience a drastic change in your symptoms following your trigger foods, and when you don't eat them are you symptom free? Usually how long does it take for the flare to start when it happens? I've heard everything from immediately after eating to as long as 48 hours. Other than your trigger foods you identified, do you avoid everything else on the "caution" list as well? That would be an incredibly restrictive list to practice for me for 30+ years. Sorry for all the questions, I'm just trying to understand the perspective of someone who has lived with IC for so long and has worked out her triggers successfully.

                Maybe some people get used to eating a bland diet and don't miss those foods but I know I would. Or maybe people have lots of time and patience to cook creative delicious recipes with the same handful of ingredients every day. With my busy work schedule and pathetic cooking skills I know I don't fit into that category either. The exclusion of tomato, lemon, vinegar and soy alone makes eating out a nightmare. Since my diagnosis me and my husband stopped buying anyting prepackaged and processed and have been cooking fresh everyday but it does get boring. And it doesn't even feel that healthy when I can't eat fruits or drink juices. The one good thing that came out of it is I was petite to start with and now I'm down to a size 0. Probably the best I ever looked, but I would gladly gain 10 or 20 pounds in exchange for a healthy bladder again

                Comment


                • #9
                  The time between eating/drinking a trigger varies for me. I know if I drink even a small drink of my husband's cola beverage, within a couple of hours I will be feeling bladder irritation. If it's a food it can take longer --- also I can get away with some things in small amounts, but if I have more than one or two, within a day or two I'm feeling it.

                  I can have some things on the caution list. When I was diagnosed back in 1975 (the "olden" days) not much, if any, thought had been given to a diet connection, but I learned on my own which foods and drinks are a problem.

                  We do eat in restaurants occasionally --- not often because we live in the country and I'd rather not have to get ready and go to town. We do have a pizza parlor nearby and I fairly frequently order from there --- I just order a pizza with no tomato sauce. It's actually very good.

                  I try to concentrate on the things I CAN have, rather than the ones I can't. It makes life much easier.

                  I am not totally symptom free, but far better than I was before eliminating some problem foods and drinks.

                  Warm hugs,
                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  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.
                  [3MG]

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

                  Comment

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