Posted by Maddie Huwe on August 15, 2018
My name is Maddie. I am 16 years old and I have Crohn’s disease (CD). I have used nutritional therapy as a primary treatment for my Crohn’s disease since my diagnosis at the age of 13. Nutritional therapy has changed my life – both my health and my relationship with food.
Right after I was diagnosed with CD in 2015, I began Exclusive Enteral Nutrition (EEN) as a treatment. I used an NG (naso-gastric) tube to pump medical formula into my stomach at night and I drank liquid formula during the day. I was not eating any significant amount of solid food (or table food) at that time. There is definitely a social aspect to eating food that I was not able to participate in while on EEN. To compensate, I began to cook and bake food with a frenzy for the people around me. I personally found cooking and baking to be emotionally helpful because I was able to experience the food through the act of sharing it with others. I enjoyed touching and smelling the food that I worked with, even though I couldn’t eat it. At that time in my life, food was an art form, and I enjoyed creating it and giving it away. Giving food to other people also gave me a chance to explain my illness and to form new relationships with people. In this way, creating food was emotionally sustaining for me.
Luckily, EEN isn’t designed to last forever, and in 2016 I fully transitioned to eating food on the Specific Carbohydrate Diet (SCD). I was suddenly able to cook for myself and found it to be sustaining in new ways. I already looked at food and saw beauty in it, but now I could experience the taste of food. I found that the nutritious food on the SCD fueled my body. I worked with Dr. Suskind at Seattle Children’s Hospital and learned about the importance of diversifying my food to create a healthy gut microbiome.
Looking around, it doesn’t feel to me like our culture always takes care to eat diverse and healthy foods. We don’t often think about what we are eating or why we are putting it into our bodies. We take food for granted. I wish we could all see food as a beautiful gift that can be celebrated. Food for me is a very sacred and beautiful experience. I hope that by educating people through creating food or by talking about my illness how it has shaped my relationship with food, that I can create more awareness for how eating healthy food is tied to wellness.
I recently had the experience of creating an educational cooking video that will be available on the Seattle Children’s Hospital NiMBAL website, which is a resource for patients in the PRODUCE Study. If you are interested in learning more about the SCD, the NiMBAL website has wonderful educational resources. I have found that food is emotionally healing, and I hope that when you sit down to a meal, you will find your food to be sustenance for a healthy life!
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