Thought One: I think one of the problems is that when people with interstitial cystitis are feeling better, they really don't want researchers or physicians to poke around in their bladder just to see what it looks like. I know I honestly don't want to risk going "back" there. So, how do we determine if eliminating certain foods and drinks is actually helping heal a painful bladder, or if it is simply a comfort measure that helps control the symptoms? Does knowing the "why" matter if you feel better when you modify your diet?
Thought Two: I can eat a lot more foods now, 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, If someone has interstitial cystitis, they are probably always going to be predisposed to bladder pain just like others get arthritis, stomach aches, or migraines. We see this everyday in people who were in remission one day and in a wicked flare the next. So, I prefer to say an IC bladder can "heal" but you are not "cured" since people with IC/PBS still have a vulnerable bladder.
Thought Three: 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 (and each person and each type of IC if we are honest!) We DO know from research and from listening to IC 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 longer. So the question is still there: What is the mechanism that causes pain and symptoms for several weeks after you drink that cup of coffee? There is obviously an effect...likely inflammation. Would medications like Elmiron work better if you were not constantly inflaming your bladder with coffee, tea, soda, etc? Do we need to start investigation different IC diets for different sub-types of painful bladder syndrome? Again, no answers, but maybe all of these thoughts will help you as you sort out trigger foods for yourself.
The bottom line is you are still better to avoid these foods even if you are trying medications, physical therapy, and instillations that are meant to help. Stop looking for excuses to "indulge" in that cup of coffee or diet soda. Make one small change at a time and "indulge" in the investment of the best health you can give yourself!
Author, Speaker, Patient Advocate
Don't Wait Another Day. Take Control of Your IC Symptoms!
For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.
For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder
For health care workers: Interstitial Cystitis: A Guide for Nutrition Educators