Friday, August 12, 2016

How Did I Become an Interstitial Cystitis Diet "Expert?" Well Let Me Tell You!

You know, sometimes you get smart about stuff you never wanted to be smart about and that is what happened to me. In the mid-1990s, I was working as an outpatient hospital dietitian when I saw my first IC patients. Besides wondering how in the world I could help them with this frustrating disease, I was also thinking, “Boy, their symptoms sound like mine!” See, I had been struggling with “bladder infections” and painful urination for years, yet test did not show bacteria in the urine.

I tried everything―avoiding baths, drinking gallons of cranberry juice (you too?), and taking boatloads of antibiotics. I saw several doctors and began to think I was going crazy. My symptoms were getting worse and worse over time and I was beginning to suspect that I had something worse than an everyday urinary tract infection (UTI).

From Denial to Healing to Helping Others

Fast forward to 1998, when I found a great interstitial cystitis doctor, and I began my journey to get well. Although there wasn’t any research to support the idea that diet could make a difference in interstitial cystitis patients, I joined the Interstitial Cystitis Network’s Patient Support Forum and “met” thousands of people with IC who were experimenting with diet modification with great results. I tried eliminating the top ten foods and felt immensely better. I started helping people online and over the phone and eventually, wrote my first book for bladder pain patients, Confident Choices®: Customizing the Interstitial Cystitis Diet in 2005.

In addition to that first book, which was updated in 2010, I also answered the call of patients and published Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder, a fingertip ready guide to over 200 bladder friendly recipes, and Interstitial Cystitis: A Guide for Nutrition Educators, giving dietitians, nurses, and other health care professionals the information they need to help interstitial cystitis patients make confident dietary choices.

To be honest, the journey hasn't been too bad. Although I wish I didn’t have IC, I never would have met the amazing people I have over the past 20 years, nor would my career have gone in the direction of publishing books, writing for national publications, and speaking around the country to patients and nutrition professionals without it. I certainly never thought I would I find myself among a small number of nutrition experts in the United States who know how to help interstitial cystitis patients using diet to control the symptoms of this painful bladder condition.

More than anything, I am just like you. I know the frustration of having more education about my disease than the medical professionals I try to get help from. I understand balancing my dietary restrictions with the wants and needs of my family. I have felt the fatigue and anxiety of standing in a grocery store wondering what I can eat. And I have experienced the emotional ups and downs as I navigated the fickleness of having a painful bladder that interjects itself in every corner of my life. I not only have the science and experience, I have the empathy and understanding to help you and other people with interstitial cystitis navigate the path to healing.

To learn more about my journey, see My IC Story. What is your story?

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate