Hope, Health, and Healing for Interstitial Cystitis/Painful Bladder Patients

I want to address this post to newly diagnosed interstitial cystitis/painful bladder patients. I know you are scared, tired, and are having a hard time figuring things out. I sense the hours you are spending on the internet searching for nuggets of truth among the thousands, maybe millions of pages and social media accounts dedicated to this fickle and frustrating disease you are now faced with. I hear the whispers of hopelessness. I get it. I was there too. And even as a medical professional, a dietitian, I was just as baffled as you about what was happening to me back in 1998.

So, I thought I would take a moment to tell you about what I do here. Maybe you are like most patients who figure out, often before they are diagnosed, that some foods trigger their symptoms. (Me? I kept saying, “I think my bladder is allergic to tomato sauce!”) To add to the collective chaos of the IC community, this "bad food list" often varies person to person.

Now, in dietitian language, we know this type of food intolerance shows up in a variety of health conditions and we use an elimination diet to help walk patients through the process of figuring out their own personal trigger foods. With IC, of course, we don’t have to start with plain chicken and green beans because we know there is a core group of foods that affect most IC patients―the "top ten trigger foods.” Keep in mind, interstitial cystitis is not taught in dietetics and nutrition programs, so in the beginning, I had to figure things out for myself too. And, after feeling like I would never be out of pain or get my life back, I gradually felt better.

Then patients and leaders in the IC community begged me, literally begged me to "write the book" about IC and diet. So I dug in, way past my comfort zone, took some self-publishing classes, and with the guidance and discipline developed writing about IC/painful bladder syndrome in graduate school, I eventually came up with Customizing the Interstitial Cystitis Diet: A Confident Choices® Book and Confident Choices®: A Cookbook for IC and OAB. These books are the foundation of my business. For most patients, I think these books are all you need to get motivated to adapt your diet to your condition. For those who need more help (such as people with multiple health conditions that require dietary intervention) I do phone and video consultations.

Eventually, in a spark of inspiration, I developed the tag line―the mantra and mission statement for my work with interstitial cystitis patients. “Hope, Health, and Healing” became my guiding principle as I expanded my work into more books and social media. It was important to me to tell you and others that it isn’t hopeless. You can be healthy. And I believe healing is possible.

Finally, I ask those of you who have worked with me to share your stories in the comments either here on or Facebook. Let’s help these new IC brothers and sisters of ours get through these horrible first days by sharing our wisdom and encouragement. Share your success stories. Let’s show them that they are not alone!

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Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

You CAN Feel Better! Just Take It a Step at a Time

 

   

 For step by step guidance for creating your own personal interstitial cystitis meal plan, see: ConfidentChoices®: 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:  InterstitialCystitis: A Guide for Nutrition Educators