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I miss the foods that I can't eat!

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  • #1

    I miss the foods that I can't eat!

    Hi all,

    The week before my period is usually a hard emotional and depressing one. But now that I have been diagnosed with IC Cystitis I am frequently feeling like this.

    Since I was very young I have loved anything marinated in vinegar. I also love tomato sauce and cheeses.

    And now I can't have any of those foods! I feel like I lost a best friend. I must have been addicted to those foods because I feel all messed up that I can"t have them.

    Does anyone feel like this? Am I all alone in these feelings?
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  • #2
    I absolutely agree that the diet is a challenge --- it took me a long time to come to terms with it. But believe me when I say that it's well worth the effort. I don't even miss most of the things I had to give up --- except for orange juice!

    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

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    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

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    • #3
      Really! When you first had to give up those foods, did you miss them?

      Do you eventually forget? and is there hope that I will like the new foods eventually?

      Comment

      • #4
        Yes, when I first started the IC diet, I was miserable. I live in the SF Bay Area and most of my social life revolved around the many different ethnic restaurants here. I've since learned to cook for myself and have discovered that some things I didn't like initially, now I enjoy. Like Pero, a coffee substitute, I didn't like it at first, but learned to make it with hot milk & sugar and now I enjoy it in the mornings. I now make "tacos" with Trader Joe's taco shells, beans, lite mozzarella cheese, lettuce, and a little cream cheese instead of sour cream. Initially I didn't like them, but now I find that I do enjoy just the combination of beans, cheese & the corn tortilla shells.

        It took time, but one thing that helped was to try lots of new recipes, and to also plan outings with friends that didn't revolve around food. And yes, it's hard, but I reminded myself a lot that it's worth it to follow the diet & to not have to cancel plans and obligations due to my triggering my own symptoms with food. That felt worse than just choosing to eat things that don't hurt me.

        Someone here suggested that I think of the diet as a loving way to take care of myself that doesn't cost extra money, doesn't require any forms or hassles with insurance, and doesn't have side effects. That also helped a lot.

        That all said, it is a big adjustment, so try to be patient & kind to yourself!
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "

        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment

        • #5
          i am still getting used to the idea of the diet too. i really dont want to do it unless i know for a fact my ic gets worse with certain foods..lol cuz i love food,trying new types of food and am creative in my choices.i too love chocolate,tomatoes,and citrus fruits. i can relate.
          i think what you should do which im planning on doing is looking at the list and circling the foods you CAN have or that you liked in the past before the ic instead of focusing on what you cant have,which there is a lot you cant have with this diet that many people enjoy.there is hope if you can focus on what you can have.. im going to check out the diet/recipe section on this forum and maybe i will change my mind about this diet thing. good luck
          Newly IC diagnosed as of February 2011.

          Medications I'm on that seem to work:
          Zoloft- one once a day
          Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

          Failed Meds:
          Elmiron-after 4 months,digestive side effects got to be too much
          tramadol-allergic
          DMSO treatments(5-6)
          probiotics

          THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
          AROMATHERAPY-candles,incense
          Village Naturals Aches and Pains Peppermint Bath Salts
          Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

          ACUPUNCTURE/HERBS
          Significant pain relief so far.

          MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

          Add me on facebook Angela Hasic

          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Lord, make me an instrument of your peace;
          where there is hatred, let me sow love;
          when there is injury, pardon;
          where there is doubt, faith;
          where there is despair, hope;
          where there is darkness, light;
          and where there is sadness, joy.
          Grant that I may not so much seek
          to be consoled as to console;
          to be understood, as to understand,
          to be loved as to love;
          for it is in giving that we receive,
          it is in pardoning that we are pardoned,
          and it is in dying [to ourselves] that we are born to eternal life.

          Comment

          • #6
            I understand!!

            After I was dx'd I went thru and cleaned out my fridge. I guess the hardest group of foods I miss now are my fruits!! I can't wait til summer when it's watermelon season. Finally I'll have a fruit I like that I can eat!!!
            Also, while cleaning out the fridge I had to throw away a half empty bottle of Bloody Mary mix. I don't drink alcohol but I LOVE that stuff!! I would pour it over a glass of crushed ice and squeeze a lime in it and be in heaven. Now, I can't think of anything worse for me to drink or eat, but that doesn't make me miss it it want it any less.
            The diet is a toughie. I just wish there were more fruit choices. I love fruit and I'm sick to death of pears and blueberries. Oh well, I commiserate with you!!
            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
            Lexapro-20 mg
            Aciphex
            Ambien-as needed
            Percocet-7.5 up to 3 per day as needed
            Valium-10 mg x2 per day
            Phenergan-1 at night
            Prelief w/everything
            Now recovering from acute pancreatitis

            Currents treatments that help somewhat:
            Heating pad
            Hot baths
            Ice
            Being VERY still while lying down with legs elevated

            Comment

            • #7
              You're not alone

              Originally posted by lauriemp4 View Post
              Hi all,
              Since I was very young I have loved anything marinated in vinegar. I also love tomato sauce and cheeses.

              And now I can't have any of those foods! I feel like I lost a best friend. I must have been addicted to those foods because I feel all messed up that I can"t have them.

              Does anyone feel like this? Am I all alone in these feelings?
              I think we can ALL relate to how you feel. Believe me, you're not alone. Cheese is not totally out, mozzarella , jack, provolone should all be ok. I'm allright with a lighter cheddar too, sharp not so much. Some people are fine with sour cream as long as it doesn't have citric acid in it (like Daisy brand). Unfortunately there is nothing you can do about that red sauce! Do you like alfredo or butter sauce? If you love chocolate, carob is actually pretty good.
              It gets easier as you do it. I have to admit I cheat once in awhile but I can always tell when I do. I love pepperjack cheese and salsa so its hard to go without those.....
              I'm not promoting cheating lol, it just helps keep me good the rest of the week if I allow myself one little cheat a week. Of course I don't get severe pain when I cheat, just a couple hours of discomfort and more frequency. We all are different.
              Cindi


              Gelnique for frequency/urgency - works great
              Macrobid after sex
              Prilosec, continuous birth control pills
              synthroid .088mg, mucinex-d, restasis

              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
              Great treatment flowchart on page 19 of the pdf

              Comment

              • #8
                I can certainly relate to what you are saying. I go through times where I just accept it, and sometimes it hits me again that I can't have those foods/drinks. I look forward to the day I just do it and don't have to think about it and let it get me down. I think Kadi has a great philosophy about it and gave me some new ideas. My biggest problem is sticking straight to what I can have (which is good to do), but not trying to be inventive and make things in new ways. I have to make myself do that and not just eat plain chicken, plain everything. I was at a community theater program last night and saw people walking by me with cokes and chocolate bars. They don't even give it a thought how lucky they are that they can have it.

                I was a big chocolate eater, so when I found out about this, I went out and bought every kind of sweet that I thought I would like and found some new things that I have learned to like. At least that was something to look forward to. I love Tahoe cookies from Pepperidge Farms and make Toll House cookies with carob chips that are delicious. Now, to make regular food good!
                treatment:
                -I follow the IC diet to the letter
                -acupuncture and chinese herbs
                -Prelief
                -UTA
                -instillations as needed
                -beginning yoga and specialized yoga for breathing and relaxation
                -Wellbutrin
                -Klonopin


                main symptoms: pain and burning

                Comment

                • #9
                  Originally posted by lauriemp4 View Post
                  Does anyone feel like this? Am I all alone in these feelings?
                  Nope, -not alone! I can remember 7 years ago standing in the grocery store, newly printed IC diet in hand, reading salad dressing ingredient labels and holding back tears. What a dirty turn of events this IC was!

                  Like Donna, I can say now that I no longer miss the things I had to give up. I look at them and the anticipation of their flavor is now replaced by the anticipation of pain. My temptation level to eat them is equal to my temptation to stick my hand in a campfire. For most items I have found substitutions that work just as well.

                  There are a few foods which had pleasant memories attached to them and those still bother me a little. But I know it's the memory (people) I'm missing, not the food itself.

                  It does get easier with time!
                  Vicki
                  "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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                  • #10
                    Thank you

                    Hi everyone thank you for the replies. I feel much better after reading all your own experiences and struggles that you went through first, and still going through.

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