This is a guest blog post written by Morgan Katsufrakis, a soon-to-be dietetic intern who has been helping me out this summer. Here she shares her personal experience living with Crohn’s disease and how it has affected her relationship with food.
Since I was seven years old, I have been complaining about my stomach hurting. It was a running joke in my family, anytime I opened my mouth my family would finish my sentence, “my tummy hurts.” For years my complaints were ignored by doctors; telling my mom that I was an anxious kid, and my nerves were making my stomach hurt. For years, I wasn’t listened to; for years I had to pretend that this pain I felt every day was all in my head. Until I was twenty-two and was finally diagnosed with Crohn’s disease.
Crohn’s disease is one form of IBD (Irritable Bowel Disease), and the other is Ulcerative Colitis. They are autoimmune diseases that cause inflammation within the digestive tract. Ulcerative colitis is specifically located in the colon. Whereas Crohn’s can be inflammation anywhere within the digestive tract (mouth to anus).
According to the Crohn’s and Colitis foundations, “approximately 1.6 million Americans currently have IBD, a growth of about 200,000 since the last time CCFA reported this figure (in 2011). As many as 70,000 new cases of IBD are diagnosed in the United States each year.” That’s about 1% of the population, so it is relatively rare.
When I tell people I have Crohn’s, many simply assume I go to the bathroom a lot. It’s frustrating to explain to people that I deal with more than just the frequent urge to go to the bathroom. I struggle with constant abdominal pain, bloating, nausea, loss of appetite, and the hardest part, my anxiety around food. I am always worried about what foods will trigger a flare. I’m nervous about eating at social events because I may unexpectedly become ill. It’s a constant mental battle around whether I should eat or not.
The link between eating disorders and autoimmune diseases like IBD has not been researched enough. There are signs suggesting that people with autoimmune diseases are likely to also have an eating disorder. Some research suggests there is a deeper biological reason for this, however, they don’t understand why. To me, it makes sense when I look back on my childhood and into my teenage years. I spent so much time in pain and fear that the next meal was going to hurt my stomach that by the time I was diagnosed, I had developed eating behaviors and restrictions that I didn’t know how to break.
In high school, I had fears around food that I wasn’t consciously aware of. I ate specific foods every day because I knew they wouldn’t make me nauseous. I was always hesitant to try new meals or eat at a friend’s house because I didn’t want to get sick. High school was a brutal place, kids were mean, and they bullied me and created even more food insecurities.
I was always a slender teen but having an undiagnosed disease, like Crohn’s, made my weight fluctuate a lot; and bullies would grab on to that. In a flare I would not eat much because of the pain, so I would drop weight. Kids gave me the nickname “cardboard” because I was skinny and “flat on both sides.” When I was out of a flare, I would eat more consistently and put on weight. During these times, I was called “chunky”, or my shirts were “too tight.” I was in a constant battle, and I never realized how conflicted I was with my body until I was much older.
When I was officially diagnosed at the age of twenty-two, the doctors put me on steroids right away to help with the inflammation. I put on weight relatively quickly being on steroids, and I was feeling the best I had felt in years. But my brain was filled with the negative thoughts of my high school bullies: “you look really big,” or “is that shirt tight enough?” And it didn’t help that when I did start putting on weight, my family would comment: “you look healthier now,” or “you look better with meat on your bones.” From then on, I used Crohn’s as a crutch to cover up my disordered eating, making comments like, “Oh, I can’t eat that, it will upset my stomach,” “Oh no, that’s too heavy for my stomach, I will get sick,” or “Oh, I can’t eat right now, I don’t feel good.”
It took me a long time to realize that the food restriction and fear of food was causing so much disruption in my life. I finally got to a point that I was so scared of food and so restrictive that I became severely depressed.
I sought out help. I spent the first year with Crohn’s trying so many diets to help with symptoms: Anti-inflammatory, Simple Carbohydrate diets, Low FODMAP, potato diet…you name it, I tried it. When none of these worked for me, I started researching nutrition on my own and reading other people’s experience with Crohn’s. I realized that I didn’t need a special diet. I needed a healthy relationship with food!
I’m still mending my relationship with food but there are a few things that have helped me through the years. Before I sit down for a meal, I say a few positive things about the meal; reminding myself that I will not get sick from this food. The food is going to give me energy for my day, and how thankful I am to have this meal. I also remind myself that it’s not what I eat but it’s who I am when I eat. If I start a meal off panicked that it will hurt my stomach or tell myself that it’s not a “good enough” meal, then it will make me sick no matter what it is. Mindset is key and it takes endless practice and patience.
Additionally, I started implementing new ways of eating and started learning to love food again. This process made me realize how much I wanted to become a dietitian. I want to help others struggling with a new diagnosis with no idea where to start, and to show them how the food they eat can help with symptoms AND can be enjoyable. As I continue with my schooling, I’m conscious of my “whys” and it motivates me to continue to pursue helping someone else’s life with food and nutrition.
