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Food and IC...some analogies

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  • #61
    Re: Trying to Understand Food and IC

    I agree, earthlady. I think one of the problems is that when people are feeling better, they really don't want researchers or physicians to poke around in their bladder just to see what it looks like when it feesl better.

    I also can eat a lot more foods and IC isn't the horrible monster that it was in the years right before and after I was diagnosed. I personally have the sense that my body has "healed," even though the doctors avoid using that term. On the other hand, we are probably always going to be predisposed to bladder pain just like others get arthritis, stomach aches, or migraines.

    As for how food and the body is reacting when you have IC, we truly don't know what the role is, and it is probably different for each type of food. We DO know from research (that hasn't been published yet) and from listening to patients that if a person eats or drinks something like coffee, that their symptoms of a "flare" might only last for 24 hours, or they may last for three weeks or even longer. So the question is still there: What is happening to cause pain and symptoms for several weeks after you drink that cup of coffee? There is obviously an effect...likely inflammation. Would the medications work better if you were not constantly inflaming your bladder with coffee, tea, soda, etc? I think we are still safe in saying that you are still better to avoid these foods if you are trying medications and instillations that are meant to help. :-)
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

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    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter


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    • #62
      Re: Trying to Understand Food and IC

      Julie,

      My doctor also always said that food would not do harm, only cause discomfort. I did want to ask, I see in your signature you mention that 94% of IC patients see some symptom relief with diet. At what point or after how long might someone consider themselves in the unlucky 6%?

      I did the diet religiously for the first year after being diagnosed while taking Elmiron and instillations. I saw no symptom (urgency/frequency) improvement and could not identify any clear food pattern for what to avoid. But it's been 4 years now, I've found no treatments that help and doctors are telling me I'm running out of options. I want to do everything I can to even get a small improvement and am trying to figure out if this diet is something I should re-visit.
      Current Therapy:
      Pelvic Floor PT exercises
      Diet

      Past Therapy:
      Sacral Neuromodulation (twice)
      Pudendal Nerve Stimulation
      Bladder instillations (self-administered daily)
      Lidocaine urethral injections
      5 Antispasmodic OAB medications
      Biofeedback
      Cyclosporine
      Elmiron
      Botox (200 IU)

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      • #63
        Re: Trying to Understand Food and IC

        How true Julie. When people are feeling good and normal they most probably don't want someone poking around in the bladder. Heck, even when I was not feeling good I didn't want someone poking around in my bladder. I do feel I am predisposed to developing bladder irritation, and most probably have had sensitive bladder nerves my whole life.

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        • #64
          Re: Trying to Understand Food and IC

          Hi Julie-
          Thanks for the great advice in regards to diet. I did print off the IC diet yesterday- know some of my trigger foods- but found more on the bad side that I did not even think about. I'm going to start a food journal so I can really pinpoint what is ok and what is not for me personally. Great resource!

          Anne
          Diagnosed Feb 2013- IC
          also IBS, auto-immune of Liver

          Have used:
          Prosed (Hyophen)- for Flares
          Levsin- tried- cant function on
          IC Diet- during flares and just after.

          Hope all are happy, healthy and pain free!

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          • #65
            Re: Trying to Understand Food and IC

            Thanks for the great info. Has anyone ever tried cacoa covered almonds???????and can we have cacoa

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            • #66
              Re: Trying to Understand Food and IC

              Originally posted by nmellana View Post
              Thanks for the great info. Has anyone ever tried cacoa covered almonds???????and can we have cacoa
              Cacao is made by cold-pressing unroasted cocoa beans. Cocoa is raw cacao that’s been roasted at high temperatures. They BOTH come from cocoa beans and therefore are irritants to IC bladders. However, you may want to consider foods made with carob which comes from the pod of a tree that grows along the Mediterranean Sea. The pod contains a sweet, edible pulp. Once dried and roasted, the pulp is ground into a powder. It's a safe chocolate substitute for those with IC bladders. You can buy Carob Powder in the baking section of most grocery stores and use it in baking goodies.

              "When you gotta go, you gotta go!"

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              • #67
                Re: Trying to Understand Food and IC

                Originally posted by AnneMi View Post
                Hi Julie-
                Thanks for the great advice in regards to diet. I did print off the IC diet yesterday- know some of my trigger foods- but found more on the bad side that I did not even think about. I'm going to start a food journal so I can really pinpoint what is ok and what is not for me personally. Great resource!

                Anne
                Keeping a journal is a great idea, which I especially suggest for ICers who are having a problem identifying triggers.


                Donna
                Stay safe


                Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                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: http://www.ic-network.com/patientlinks.html

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                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.
                [3MG]

                Anyone who says something is foolproof hasn't met a determined fool

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