Sunday, August 9, 2009

Crohn's & Colitis Foundation - Still Missing the Healing Piece

Today I attended the Crohn’s &Colitis Foundation of America Tn. Chapter meeting titled The Road to a Healthier Life with Crohn’s Disease and Ulcerative Colitis.

The title itself was intriguing. I wondered what their idea of a healthier life was. The program outline indicated a session on nutrition…could I dare hope that there would be education on the significant role that food plays with these diseases? I quickly realized that their idea of health is managing the symptoms and in many cases learning to live without a colon. There I sat, in a room of over 150 desperate people seeking answers from the experts, living a truly healthier life without Crohn’s. I was disappointed that with all the research $$$ that this organization raises to find a “cure”, the only answers they can still offer are stronger immune -suppressant drugs and colon removal. They devoted a session to convincing people how wonderful your life is after getting the bag. A woman spoke on what her daily routine was like now living with a bag. And, though I admired her positive attitude to a very sad situation, a wave of gratitude flooded me as I realized the out- come I had avoided. She enthusiastically described how to and how much time it took her to clean and /or replace her bag in comparison to how much time she had spent with bathroom trips previously.

“I much rather spend that time in the kitchen preparing food that keeps me truly healthy”, I thought to myself.

The people that I know that have made this body/life altering decision to have the colon removed have been adults- most of them well on in years. I am dealing now with younger children and teenagers whose lives are just beginning yet stifled with the ravages of Crohn’s and Colitis. This is was not an acceptable solution for me at my young age and it is not a solution for them!

One tearful mother spoke of her 12 year old son who can’t seem to get off the prednisone. Every time he reduces the dose he flares up. He has spent the summer lying around barely being able to eat anything and now is nervous about school starting. Frustrated she asked the panel of doctors what she can do….what foods should he avoid. The answer that I’ve been hearing for 30 years still rings in my ears “ we haven’t found any direct evidence between food and these conditions, some people are sensitive to some foods while others are not…do not limit your child’s eating because they are still in their growing years and they need all foods”

While I believe the panelist was speaking truthfully, this robotic answer highlights the fact that there has been no enlightenment in the medical field to the role food plays in helping the body settle inflammation and support healing. And after hearing this answer for so long it makes me wonder if they ever will understand.

And, so the reality of my job once again became evident because I sat among all those people and professionals with the other piece to this puzzle….the healing piece.

The meeting broke and I could hear the heavy sighs as people left, disappointed. Now they would go back to their personal hells with no new answers and worse ….no hope for anything better.

I made my way to the lady who spoke about her son….because I couldn’t leave without giving someone a spark of hope.

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