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  • New to IC

    I was diagnosed last Friday and I couldn't believe it! I have had the symptoms for a few weeks now but was shocked. The diet has thrown me for a loop somewhat because I am a vegeterian (can't tolerate eating meat) and they took out much of what I already ate. I don't have children so my husband and I ate out A LOT. It WAS like a hobby or something for us, trying new places weekly etc... I am also a HUGE foodnetwork fan and enjoyed creating new recipes for my hubby and I.

    I guess the hardest part for me is seeing that it is uncurable and you have it forever. Does that mean I can never have tomatoes again? Or orange juice? Or different fruits? There is so much delicious food out there! I have been developing new recipes to cope and they've been somewhat tasty but its hard b/c my husband is not going to eat this way so we've been cooking and eating seperately (weird). I hope I get to a better place mentally, I am up and down and this isn't me. However, I am thankful for this network and your posts. I am learning a lot from reading them.

  • #2
    Many get to the point that they can try and see how their bladders handle a larger variety of food. It's very important to get your bladder calmed down before you see what you can handle though. I can eat a much wider variety of food than I had thought possible when first diagnosed. You also may find, as you experiment with new recipes, that your husband decides he likes your recipes more than his own! My husband has now eaten an IC-friendly diet for almost as long as I have, although I know he indulges a bit when at work.
    Last edited by meResque; 04-17-2011, 11:13 AM. Reason: Spelling is important!
    Symtoms started July 2010.
    Severe pelvic floor pain only.

    2 time PT graduate!
    In medical remission since August 2011; able to eat and drink anything I want currently.

    IC meds:
    200 mg Elmiron in the morning
    100 mg Elmiron @ night
    Macrobid after intercourse

    03/11 07/11 01/12
    If at first you don't succeed: 07/26/2013!

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    • #3
      The diet is rough, you will find some foods tolerable to your IC. However like 99% of us can never have real coffee or spicey foods. I miss my morning coffee more than anything. It has been a year ago this month for me when I was diagnosed with IC. All we can do is pray for a miracle cure and do the best we can. You are in the right place for understanding and getting alot of info I wish you the best, your sister icer.
      <center>
      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
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      • #4
        I cant give up coffee i love it too much

        I havent rmvd coffee from my diet, it is unfortunate bcs thats why I probably have Flares. With the diet it takes a lot of patience because you shoul start fresh removing all foods on the possible flare list. But eventually you can bring them back one at a time to see how you react to them. If after introducing one food into your diet with no flared than you know you can probobly eat this food, Than introduce a second food, and so forth. There may be some foods you can tolerate and some you can not but you have to learn what works for you. Me sadly I dont folliw the diet and eat whatever and later suffer for it. I also dont eat right and really dont eat the foods on the list but yet flare anyways. Ive mentioned in another thread that I can ve fine one week and awful the next couple of weeks with no new foods eaten, so its all very strange to me. I hope you find a good diet that works well for both you and your husband so you can eat together.

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        • #5
          I too have been diagnosed with Interstitial Cystitis. It is a horrible thing to deal with. As far as diet goes I believe it will take a lot of experimenting but eventually you will find out what you can eat. Everyone is different in this respect. Whatever you do...please do not consider the Interstim implant. They do not work and they are not supposed to be marketed to folks with Interstitial Cystitis. They will not help with the pain but in your desperation when you have reached the end of your rope don't let anyone talk you into this. Good luck and God Bless.

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          • #6
            I don't know a lot about the Interstim, but I have seen quite a few people here say it helps with frequency. It is not supposed to be marketed to help with pain, and doctors should not tell patients that. It's always best to do your own research and discuss with your doctor before writing off a treatment.
            Symtoms started July 2010.
            Severe pelvic floor pain only.

            2 time PT graduate!
            In medical remission since August 2011; able to eat and drink anything I want currently.

            IC meds:
            200 mg Elmiron in the morning
            100 mg Elmiron @ night
            Macrobid after intercourse

            03/11 07/11 01/12
            If at first you don't succeed: 07/26/2013!

            Comment


            • #7
              Interstim

              I understand that every person should research it for themselves but i did do that and i was misled. I have 2 Interstim implants. They do NOT work. If you read their long term studies (which are very few) you will see that their math is misleading. Better yet go to cafepharma.com and see what some Medtronic reps have to say about Interstim and their own studies. One of them calls it a joke. Another says that he researched it and there was only a 10% battery replacement rate which means that they dont work long term obviously or there would be alot more people that would be getting new batteries for them. I believe that they are possibly dangerous also. Thats my opinion anyways.

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              • #8
                prelief

                Hey! I can totally relate to where you are. When I first started this diet it wiped out a lot of foods that I ate regularly. One thing I have found that helps me is Prelief. It's a dietry supplement that helps lessen the acidity that is absorbed when you eat or drink acidic foods.

                For me personally I can eat tomoato based foods with 3 Prelief and be fine. I cannot however use it w/ acidic liquids and do well UNLESS they are acid reduced liquids. I can tolerate a cup of low acid coffe diluted w/ a lot of creamer in the morning but if I go over one cup I pay for it. I also tried low acid orange juice w/ 4 prelief and did okay.

                Personally I would recommend sticking to the diet for three to four months though before trying anything else. I agree that the bladder is inflamed and really needs a LOT of healing time w/ safe things only passing through it so it can heal. Then maybe you'll find doing some of the above won't be harmful.

                There also are liquid Life drops. That alkanalize juices and coffee. I usually add those to the low acidic coffee and orange juice when I have them. They also seem to help a little. I also have found that w/ 3-4 Prelief I can do tap root beer - I normally only drink half of the cup though. If I do more than that sometimes I don't handle it well. I also am a sweet tea fanatic and have found I can do about half a cup of sweet tea with the drops and the Prelief. I honestly wouldn't recommend it though if you are in a flare. When in a flare it's best to soothe for a while. Now if I could just practice what I preach.

                Good luck and I wish you speedy recovery and healing!
                Diagnosed w/ IC 12/2010. 3 small kidney stones removed in May of 2011.

                Currently taking: Elmiron (3 times a day-pour capsule into about 4 oz. of water and drink it down (with a little food on my stomach first), Valium (an eighth to a fourth of a pill as needed (rarely need this anymore), and Curelle Probiotics -one a day in the morning on an empty stomach.

                Tried: Urelle, Prelief, Oxybutynin, Urogesic Blue, antihistamines, nuerotin, flomax, vesicare, enablex, cystoprotek, prozac, quercetin w/ bromelaine, marshmellow root tea, garlic pills, fish oil, magnesium, Vitamin D-3, Boron, B-12 w/ Folic Acid drops. Homeopathic allergy shots for food and inhalents.


                **Elmiron and Culturelle Probiotic have helped me get a better quality of life. I've been on the Elmiron for 6 months so far and am feeling so much better and can eat and drink so much more!

                **I love the ICN - it has been a blessing in the midst of this evil curse!!!

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