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new to the board/ IC cookbook?

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  • new to the board/ IC cookbook?

    Hey everyone,

    I am new to the board, although I have been diagnosed with IC for 3 years. I have really enjoyed reading all of your posts and it has made me realize how lucky I was to get diagnosed so quickly. I was a college student at the time, and going to the Student Health clinic for exceedingly painful frequent bladder infections despite the fact that I was NOT sexually active (student health clinics tend to blame everything on sex). Anyway, when I also started having pelvic pain, one of the student health Drs. said to me, "I just read an article in a journal on something called Interstitial Cystitis. I really hope that you don't have it, but I'm going to send you to a uro. just to rule it out." Anyway, my uro. did the cystoscopy exam in the hospital a month or so later and I was definitively diagnosed. He put me on Elmiron right away, and gave me the IC diet information. The Elmiron really helped me out and 9 months later he took me off of it in lieu of just trying to treat it with diet.

    Anyway, for some reason, I have been having MAJOR flair ups a lot again in the last 6 months or so and I have made an appt. to see my uro again to get back on Elmiron. I was wondering, however, if there is anything like an IC cookbook out there that we can buy? I have used the "Whats Cookin'" page on the IC Association page a number of times, but I would really like a BOOK that I can flip through and keep in my kitchen. Does anyone know of one? I am married now, and I want to keep a good diet for both me and my spouse despite the fact that I am SO restricted.

    Its wonderful that youre all here, there is SO much more info. out there on this condition than I had realized.

    Thanks for all your posts,

  • #2
    to the IC Network Ellen! If you look up at the top of the page there is a link for the ICN Shop. I know that there is at least one cookbook for sale if not more. My mother actually bought me one for Christmas. Hope this helps.

    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

      Hi Ellen,
      Here is a link to the ICN shop. There are 2 very helpful books relating to diet & IC. "Confident Choices" is an overview of the diet, including a plan to figure out your diet triggers, & has recipes & meal plans. "A Taste of the Good Life" is an IC cookbook.

      Here is a link also for another online cookbook for IC patients.

      Here is a link for a list of foods that work & don't work with the IC diet. I printed it out & taped it to my fridge. I started out eating only from the "usually ok" column, then one by one added in foods from the "middle" column. As I tested out each food, I put a star by the ones that were ok & crossed off foods that caused my symptoms to increase. So, eventually I had my own individual diet list. My mom did this also when she got IC and that helped her & my dad learn what worked & what didn't. (Mom got IC a year & a half after I did).

      Wishing you better days soon!

      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!


      • #4
        Thank you for the suggestion!! I am ordering one tonight.


        • #5
          IC cookbook

          The Ic cookbook is a wonderful book. My Uro told me to follow the diet and eat from the cookbook and it was really easy. The meals are easy to put together, they taste delicious and the best part is,, you know your not going to get sick from eating whats in the book. I hope your love yours as much as I love mine.
          Living with Endometriosis/IBS/IC
          Lost both Ovaries due to endo, one in 02 the right was taken 06
          Have frequency and constant burning right below my belly button, but it doesnt burn to pee(most times).
          Doctor also told me I have a cranky pelvic area.
          On No medication right now for the IC, except pain pills, darvecet and lortab for the really horrible days.