Giving Up Solid Food at Seven Years Old: My Journey With Crohn’s Disease
I was diagnosed with moderate to severe Crohn’s disease shortly after I turned seven. As a young child in first grade, I knew very little about IBD, but when our doctor suggested a treatment which did not require medication, I knew I wanted to try. My parents were supportive of the plan as well, and so began my journey with enteral nutrition.
I was put on a protocol that required me to get the vast majority of my nutrition from a special formula, instead of solid food. The formula we were going to use was Modulen, a product that was not available in the U.S. at the time. Fortunately, we were able to import it. We quickly learned how to constitute it to the proper osmolality and to flavor it, so it became, if not tasty, at least drinkable.
Then came managing the regimen at school. Though no outside food was allowed in my school’s cafeteria, an exception was made to accommodate my medical needs. I was extremely grateful. Having to drink my ‘shakes,’ as we called them (formula was not an appealing word to seven-year-old-me!) in the nurse’s office during an already-isolating time would have felt terrible. My school also ensured that there was a mini-fridge on my floor, since the shakes had to be kept cold.
But what really made the regimen tenable was the support from my friends. They rallied around me; they raced to drink their drinks as I drank mine; they did more than anyone could have predicted or expected from a group of seven-year-olds to support and motivate me, and to normalize what I was doing, which made my difficult treatment a little more tolerable, and kept me going.
My treatment became a part of my life and followed me wherever I went, whether it be school five days a week, sleepaway camp every summer, birthday parties, dinners, lunches…. I didn’t realize how big a role something as simple as food plays not only in terms of survival and health, but in many aspects of social life, until I couldn’t partake in common rituals like birthday cakes and holiday meals.
I stayed on the regimen for eight years. I am now 16 and am in remission. Suffice it to say, I know how lonely an IBD journey can be, and the strength and perseverance it takes to keep at it through the ups and downs of treatment and illness when it feels difficult and endless. No child wants to feel different, and nobody wants to feel unwell, stressed, or burdened. Being diagnosed with a chronic disease is challenging. My parents worked with the Children’s Hospital of Philadelphia and Mount Sinai Hospital to define and refine my protocol, my school accommodated it, and I worked hard everyday to maintain my wellness. But the casual, daily support from my friends and community was the thing that kept me smiling. I will never forget it.
