Wednesday, February 27, 2013

Clearing the Clutter of Bad IC Diet Information by Spreading GOOD IC Diet Information



frustration
Ok, this is me breaking out of my encouraging, positive mode for a second here. I am angry. I am frustrated. I am depressed……I have had enough, and I don’t know what to do. 

I just received an email from an IC patient who had been following a “virgin” diet for the past several months. She had eliminated gluten, dairy, eggs, soy, peanuts, sugar, and corn. She was eating mostly fruits and vegetables, and now she has horrible, horrible bladder pain.  At first, I wanted to SCREAM, “DUH!” But I didn’t….I encouraged her and talked gently...because she was afraid and she thought she was doing the right thing and someone else obviously convinced her to try this…and in the end she DID turn to me and I desperately wanted to help her. 

I get SO frustrated when I hear these stories. I totally believe in patients trusting their intuition and adjusting the IC Diet for their own needs, but where did she get this information? A random internet site? A Facebook or Pinterest group that is promoting unconventional interstitial cystitis diet practices? There is NO reason why this poor woman had to go through this because we have solid research now and excellent patient documentation about the foods that cause flares and those that do not. 

As I write this, I truly want to cry. Her life is precious and sacred and someone is stealing DAYS – WEEKS – MONTHS from her and other patients with their bogus information. 

Trust me, I know why the IC patients do it. I have been there.....experimenting and desperately trying to find out what is wrong with me. Yes, following the IC Diet can be cumbersome, but not as cumbersome as some of the alternate diets I have seen out there. How can we clear the clutter and just get back to basics with the IC Diet?? How many ways can I spread the message? Trust me, I don’t make any money doing this. I don’t work a full time job, I do this. I try to help you. I try to do it in as honest and encouraging way as I possibly can. Yet, when I hear these stories, I sometimes feel like my whole mission is pointless.

But today, I am going to give it another shot. Let me just take a deep breath and try to clarify some things....

First, what is the "IC Diet"? Over the course of several months in 2009, I met with representatives from the Interstitial Cystitis Association and the Interstitial Cystitis Network, and we went through the food list item by item. (See previous blog article: How Did the Standardized IC Diet Come About?) We compared the food to lists from emerging IC diet research and from decades of patient reports. We triple checked it against our personal consultations with painful bladder patients and quadruple checked it against our personal experience as patients ourselves.

Our two primary goals were to provide a liberal list of foods for patients to choose from as well as encourage them to eat. The third outcome was a bonus…the AUA came out the following year with recommendations that included diet modification as one of the first line interventions for newly diagnosed interstitial cystitis patients. What a victory! The doctors were now on our side!

But here’s the thing. The IC Food list isn’t sexy. It isn’t related to any of the fad diets out there. It doesn't involve any green smoothies or purple shakes. But it IS real food that you can eat every day. It is a HEALTHY, NUTRITIOUS diet based not only on science, but on tens of thousands of patients recording their personal findings. Although some IC patients might have additional allergies and foods sensitivities, most can eat the same basic foods. So our message was for people with IC to keep it simple and stay away from all of that other craziness that will just complicate things. Ignore the people who want to take your money. Educate yourself on what we KNOW about the interstitial cystitis diet and what has worked for tens of thousands of other people.

Second, finding good information: The Confident Choices books are not published by a big publishing house, but they provide EXCELLENT information on the interstitial cystitis elimination diet written in a language that most people find easy to understand, helpful, and encouraging. I care deeply about the patients and I hope that shows.

You can pay the same price for whacky interstitial cystitis e-books that tell you a bunch of bogus stuff written by people who don't care at ALL about IC patients.You can even spend your hard earned money on books that are poorly written or are too technical for the average interstitial cystitis patient. The biggest compliment I get on these books is that I gave straightforward and encouraging information. People begged me, “Just tell me what to eat.” So that is what I wrote. It is that simple. Why don’t people see that? The information is out there.

Third, getting additional help: What if you are still confused after reading my books? Or you feel like you really need to talk to someone about the IC Diet who “gets it?” That is normal part of the chronic disease process. It is confusing and crazy and you are exhausted and frustrated. If you want to take it a step further, I can help you streamline the process. 

The prices for these IC Diet consultations are reasonable and about 70% what most dietitians charge. I know insurance doesn’t cover this, so I want to make it affordable for you, the average person. PLUS….Talking one hour with me can save you hundreds of hours of research and thousands of dollars you might waste on other books and products. I can help you minimize your bladder symptoms while you maximize your quality of life. Isn’t that what we all want? 

Finally, spreading the word: Many of you follow me because you have already purchased my books or have had a consultation with me. For that, I thank you. But, now I need a little more help from you. Help me spread QUALITY information about IC Diet on your other Facebook pages. Tell your doctors about the Confident Choices books and my services when you go to your check-ups. Review my books on Amazon. Give people the correct IC Food List link. Tell other patients about my books. Tell them about the IC Diet Facebook page and this blog and my newsletter. Tell them I am here to talk to them when they are the most afraid and in pain. I can help people but they have to know I exist.

The bottom line: Help me combat the bad people who are spreading dangerous information.  I don’t want any more IC patients taken advantage of by those who give them a diet that will steal their life away. If you hear about bad information being spread, speak up or tell me so I can address it.

Now, I need to respond to another email from that patient who wrote to me this morning. Hopefully, I can help her out of this mess.  


Author, Speaker, Patient Advocate

Don't Waste Time: Stick with What We Know Works

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



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4 comments:

  1. I do know how frustrating it was when I was first diagnosed and trying so hard to find the right things to eat. I thought I had it figured out, then I was diagnosed with gastroparesis, which has its own diet and eliminated the few foods I could eat. Now I live on cereal, toast, vanilla pudding, mashed potatoes...at least it's a little more IC friendly! Still frustrated...

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    1. Julie, I totally agree! It's very frustrating to see people with their own agendas promoting poor advice on IC treatments, as well as diets. I just wish there were some way to have such advice automatically marked as bogus.

      Donna

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    2. We try hard on the ICN forums to watch what people say. There are many moderators who delete posts on a daily basis. It is Facebook and other social media that become problematic. If the "owner" of the pages don't know good from bad themselves, bad information can spread like wildfire. We all have a responsibility to say things carefully and not spread bad information even unintentionally. It is hard, to be sure. Hugs........Julie

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  2. Having IC is difficult enough but then getting the wrong info saying it is the "miracle cure" for IC is awful. I have found the IC diet the way to go. Yes, I am very careful of what I put in my mouth, for I also developed vulvodynia. Not all IC patients develop this, but I did. I had a one on one with Julie Beyer at the beginning of my journey with IC. I use the diet. However, I have to say that what might be safe for you, may not be safe for me. So, I experiment. I also speak to a few women who I met on the IC network.... but I do it privately. Some posts on the network are very depressing. People say they follow the diet, but they you learn that they drink coffee, or soda! YUP!... of course pain will show its face. My advice is simple. IC diet, Learn proper stretches for the pelvic floor... (go to PT) Get a great urologist. Speak to positive people. AND Don't buy any books that say... Here is the CURE....for if this were true. ALL IC'ERS /and doctors would know it!... Hang in there. Spread the WORD!... Warmly, carol

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