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  • Newbie Here!

    Hi All
    I'm a newbie here and just wanted to introduce myself. I'm a 30 year old female about to celebrate my 1 year anniversary of marriage and was officially diagnosed in October. Started having severe pain last March and after undergoing tests, scans and seeing a bunch of different doctors I had a Lap that finally ended the mysterious question of where the pain was coming from.
    I have to say I'm finding it quite difficult to find foods that are ok for me to eat based on the "do not eat" list. I'm on the go all the time, work 2 jobs so need quick things to eat throughout the day. Any suggestions would be greatly appreciated.
    I'm currently taking Elmiron 100 mgs 3x a day and it seems to be helping a little bit but feel that not a day goes by that I'm feeling some sort of discomfort.
    Any advice you all can share with me, will I be able to eat the foods I love....(Red Sauce, Chocolate....)ever again?

  • #2
    to the ICN...

    It is possible that, once you give your bladder a chance to rest and heal for awhile, you might be able to introduce some of your favorite things back into your diet. But I caution you to wait for several weeks before doing this and do it one thing at a time and in very small amounts; spacing these items out over long periods of time. Don't try to jump back into your regular eating habits. For most of us, our trigger foods and/or drinks will always cause problems.

    As an example...My bladder acts up with citrus and I love oranges. I know that I cannot ever eat the amount I used to. So, every once in a very long while, I will eat a section or two or, I will take a sip or two of orange juice.

    I think about it this way. There isn't an orange grown that is worth taking the chance that it will cause a flare.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    IC 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.


    • #3
      Glad you found us........

      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
        Hi Kimcheck

        Glad you joined. It seems we have some things in common. I am about to turn 30 and was married last year as well. I was officially diagnosed in December 2006 after having urniary burning and pain for a couple of years. I was doing the diet sort of off and on since December but would give into wanting pizza or spaghetti, ( I love Italian, so the diet has been hard.) However, the last time I ate pizza I went into a week long flare and decided to really strictly follow the diet and it has made a big difference.

        It is hard when you are always on the go. I try to bake chicken breast and steam veggies on the weekend so meals just have to be heated when I get home for work. Some nights I will just throw a potato in the microwave and have that. I have found by planning out what I buy and eat I save time and eat much healthier.

        You did not say how long you have been taking Elmiron. The general consensus I have gather is that Elmiron takes a looong time to kick in. I myself have been taking it 3 months now and am starting to feel better but not sure if it's the Elmiron or the diet (probably a combo of both).



        • #5
          Hi! Glad you found us! The diet seems really strict at first, but once you know what your triggers are things will be much easier. I eat a lot of veggies and cottage cheese, turkey sandwiches, stuff like that. I'm on Elmiron too. Have been now for a year. It took about 4mos to kick in, then I added Elavil and WOW I felt so much better. I know what you mean about feeling great in the morning then not so good later on. Think its just from being up and around and tiring your body out. For about the past 4-5mos I've been pretty much in remission. I was able to go on a cruise in January and eat what ever I wanted-lots of chocolate desserts. I try not to go crazy everyday now, but I can eat some chocolate like every other day, and I'm doing well with most other things too-the key is moderation. Got to have spaghetti once w/ no problems, but the next time it made me flare so I still stay away from red sauces. Had a flare a couple weeks ago from a UTI, but other than that I feel pretty good most days. There is HOPE!!!! Last Sunday I went all day w/out even thinking about my IC! How great is that!


          • #6
            Some of us are able to add back in trigger foods after a time of feeling no symptoms. I waited until I felt great for weeks and slowly added back in foods. SLOWLY and one at a time. But before my symptoms got better I was very strict with the diet b/c it can make so much difference and not following it only hurts your bladder.

            Diagnosed August 2001

            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


            • #7
              Have you also tried using Prelief and Tums? I use those when I'm worried that I might wind up eating something that will bother me. I also make an alkalinizing tea- but those things can be tricky, as some people are bothered by them. I find brewing a cup of that a day is helpful, but that's me...and it tastes kind of like I boiled some guy's used gym sock.