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  • Party Question

    I am going to my 25th high school reunion in May, and am uncertain what meals or drinks they will be serving. How in the world am I suppose act normal at this thing if it's something IC unfriendly. I hate having to go into detail about my illness with anyone as it is!!! Any suggestions?

  • #2
    take some prelief before you eat, and just eat very small portions. If any one asks, your not a big eater, thats all they need to know.
    Have a blast, and hope you stay flare free.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Tigger has some good advice.. I would also eat before I go, that way you can just nibble on things that is IC friendly, But still take the prelief...

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

      Link to Patient Handbook:

      Diet Reference Sheet:

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        thats a great idea.. you could add I had a prior engagement that I ate at..
        'The will of God will never take you where the Grace of God will not protect you.'


        • #5
          We had a Holiday Party for work and I was worried about it because I wasn't sure what I was going to be able to eat. Back then I hadn't been able to find Prelieft yet but it did just fine. I actually had a salad with a little bit of salad dressing and some other questionable things. I just drank lots and lots and lots and lots (lol) of water. I was peeing the whole time but I really didn't have a flare that I remember from it. That was one of those days that I thought, screw it, free yummy food, I'll eat what I want and just drink lots of water to flush it right out.

          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus


          • #6
            I went to a fifties church gathering. I brought my cooked food and they were helpful to heat it up in the kitchen for me. They should be sympathetic about your food alergies.
            not yet dx with ic-diagnosing myself as of aug 2006
            diagnosed ic-october 5 2006(huh just what I thought)

            cod liver oil (for vitamins a and d)
            bladder is not getting worse but maybe better
            diagnosed ibs-september 27, 2006
            don't know if it's ibs or some other underlining condition. hair loss, weight loss, constipation
            all this even though I eat.
            Mercury toxicity with Candida Albicans
            Realy toxic and sick
            Dental almagams removal and chelation for heavy metal toxins and candida cleansing as soon as fillings are out
            had catscan, ultrasound, colonoscopy
            Matthew 21 verse 22: jesus quotes"and all the things you ask in prayer, having faith, you will receive."

            I eat to live, not live to eat.


            • #7
              When I go to any kind of convention, etc., I check ahead of time to find out what is being served. I simply explain that I have some food allergies. I have never had anyone refuse to accommodate me. Usually the menu has things I can have with minor adjustments.

              Stay safe

              Elmiron Eye Disease Information Center -
              Elmiron Eye Disease Fact Sheet (Downloadable) -

              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:


              Diet list:

              AUA Guidelines:

              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


              • #8
                I would just say you had a bit of a tummy bug the day before so your not that hungry and then eat before you go.

                that way no one will ask any questions and lets face it, its nothing to do with anyone one else so dont worry what they think and just have some fun

                Started with symptoms 2004 after a severe infection.
                Was diagnosed with IC Feb 2006 after cystoscopy.
                Diagnosed with vulvodyina and PN in july 2006.
                Dignosed with ME and IBS Oct 2006.
                Currently taking Amytriptaline 50mg, regular pain killers and birth control!
                Also doing IC diet and regular use of heat packs.
                Still struggling with IC and controling my symptoms so looking for some help

                also recently had abnormal pap, CIN III and just had LEEP done 2007


                • #9
                  Great advice already. I would just add that when it is an occasion when I might have something that will cause a flare, I take some pre-emptive Pyridium before I go just in case.

                  For me personally, besides the pain, the worst part of this disease is being at an event where everyone is eating something I can't have and talking about how wonderful it is. I agree with everyone that you might want to go ahead and eat before the event. Then don't hang around the food table so much, but concentrate on seeing and catching up with your friends. If it's a sit down meal, eat what you can and if anyone asks, you can educate a few people on IC. It was at this very scenerio that I found out my best friend from high school (30 year reunion) also has IC! What are the odds of that?


                  • #10
                    Hi! I was reading your post and the one thing that stuck out to me was your feeling the need to act halfway "normal". The thing is, it isn't normal to have to scrutinize every morsel of food we eat, and I understand not wanting to mention this sort of things to virtual strangers because it is none of their business, but why pretend?

                    I, too, am struggling with this. My boyfriend and I had tickets to an expensive wine tasting event before I got diagnosed. They were non-refundable and we had a non-refundable hotel room already. He wanted to cancel based on the fact I wouldn't be able to taste or eat.

                    I told him we were going anyway because we'd already paid a lot of money, because I didn't want to start living like a hermit just because of another medical condition that can be disabling. I told him that if I felt well, we were going. End of story. He listened. We had a decent time. He tasted, I smelled wine. I was able to eat two things being served....yes, I ate a taste fo butternut/crab bisque and for my main course, I had a piece of plain cheesecake and gave him the crust.

                    My boyfriend and I are serious foodies. This is tough on us. It's one of the things we enjoy most together...eating. And for a while, it won't be that way. The reality sucks.
                    Just have to make the best of it, kwim?

                    I think if you pack some healthy IC friendly snacks in your bag and you eat before you go, you'll just get so busy socializing, you won't care about the food.

                    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.


                    • #11
                      Thanks everybody for all your great advice. I am now fully armed, but not dangerous!!!lolololololololol