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How to explain disease/diet

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  • How to explain disease/diet

    I hit a low point on Tuesday when my department had a birthday lunch for some coworkers. They ordered in spicy barbecue and sides like coleslaw and beans – nothing IC-friendly. I was stuck buying my own lunch – a dressing-less salad – from our lunchroom. A couple coworkers (who don’t know about my IC) made jokes about me getting such a healthy thing to eat when they had ‘good’ food. It was hard enough to sit through the lunch munching on plain lettuce while everyone went on and on about how delicious the food tasted (and it smelled SO good!), but having to explain to everyone a million times why I couldn’t partake was tough.

    How do the rest of you field questions from other people about your disease? This was just one of many times I’ve been in this position, and just wish I could say something ‘easy’ like I’m diabetic. I think people would understand that better, instead of getting grossed out when I start talking about my bladder…

    Allergies (Claritin)
    Anemia (iron supplement)
    Asthma (albuterol inhaler)
    Bilateral hearing loss (hearing aids)
    Chronic migraines (amitryptiline, midrin, special diet)
    Chronic rhinitis and sinusitis
    Endometriosis – stage IV (lapex surgery done by specialist 3/07; now pain- and symptom-free!)
    Other treatments tried: surgery, 13 birth controls, Lupron (poison! ), and Depot Provera (the worst thing my body’s ever gone through! )
    Interstitial Cystitis (Elmiron, Tramadol, Darvocet, IC diet)
    Knee problems (ballet-related injury – no diagnosis 10 years later)
    Scoliosis (>10 years of chiropractic treatment – none currently)
    Seizure (4/03)
    Surgeries: 6/95 – maxillo-facial surgery to realign jaw; currently have 8 screws in jaw
    2/06 – laparoscopy with excision of endometriosis and ovarian cyst, appendectomy, hysteroscopy, D&C, removal of uterine polyp
    3/07 – laparoscopy with excision of endometriosis, hysteroscopy, cystoscopy, hydrodistention, insertion of stent in ureter

  • #2
    Just say I have some diet restrictions and I can't have anything acidic/spicy. That works for me alot. I just give people enough info to staisfy them w/o them getting weirded 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


    • #3
      I don't have problems with food sensitivities but when I try to explain IC compare it to being diabetic. This is a disease with no cure, only treatment. I have to do what works to control the symptoms. I tell them IC is like bloodshot eyes (or conjunctivitis) of the bladder.
      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
      My Helpful Hints for Home Instillation:

      Institute of Female Pelvic Medicine (J. Dell, My MD)
      Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
      I post to encourage and offer total support for rescue instillations.
      Find me on facebook: L. Clark Thomas


      • #4
        I'm not as diet sensitive as a lot of people, so I can eat some things, so it just depends on what it is, bbq-probably not; but most of my co-workers know what I have so they try and order something that I can eat.


        • #5
          i expain it as food allergies or sensitivities. People seem to get that and accept it with no problem.


          • #6
            I just say I'm allergic/sensitive to many foods. If I say it with a smile, nobody questions it.

            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


            • #7
              I also say the allergic/sensitive to foods thing & then I change the subject, so no one gets too nosy. (And I skip parties if I feel like I'm not up to facing it, which sometimes I'm not).

              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!


              • #8
                Hi there! I'm sorry you had such a difficult experience. It can be yucky when you are sitting there and the only one not enjoying the great food you used to be able to eat.

                My approach is pretty blunt. I'm honest, but keep it short and sweet. I usually tell people that I have a bladder condition that keeps me from eating certain foods. If I eat them, I'm miserable for hours and possibly days. i'm firm when I say it and then might make a comment that I wish I could partake, but I can't.

                I've always been a very picky eater (all my life), so I've always ordered food different than most - so maybe I'm just used to be different and it's easier for me to be more direct. I'm also very fortunate because my symptoms are regulated with medication, so I can eat most things in moderation. However, there are still some definite no no's. Before my symptoms were regulated, I had to be a little bit more disciplined and carried my bottle of prelief with me everywhere. I'm also very lucky, because most of co-workers get it and know that I have restrictions.

                I hope you find a way that works for you that will help you in these situations. Good luck the next time you encounter a situation like this!

                Take care,
                I speak of my personal experience only to provide support to others who have IC. I am not offering professional advice in any way. All patients are different and may respond differently to various remedies and medical treatments. These posts are based on my personal experience and are not meant to be viewed as medical advice nor do they replace the proper evaluation and treatment by a medical professional or healthcare provider. Please seek out treatment and medical advice from your doctor and medical team.