Crohn’s Disease Action Now
There are landmark days in our lives that we know will shape us. These events will be ever-present and guide our trajectory and help shape our character. For many, those days include graduations, marriage and the birth of children. I have been both fortunate and blessed to have experienced all of those. But for me, there was one day, benign, innocuous and not underscored by any banner event that would change everything for me. This event would be ever-present during my landmark days and all days in-between.
It was a Tuesday morning which started like any other Tuesday for me in 1996. I was a 14-year-old girl, excited to see my friends at the school bus stop, my backpack on and rehearsing the conversation I was gearing up to have with the track and field coach at my school. I had rehearsed this conversation all Thanksgiving weekend. I wanted to discuss tryouts for the track and field team. Should I run the 100, 200 or 400 meters? I was traditionally a 100 m runner but wanted to move to the 400 m. I spent all of September practicing, running, staying after school. I was full of energy and happiness. I found a great group of friends in high school with shared interests and I loved to run. I cannot describe what I loved about running, the feeling of the track under my feet, pushing so hard it felt like the earth was moving away from me or the sense of my lungs full of air. All I know is that it felt powerful and free.
I made it to the end of my driveway, looked up at my Nonna's bedroom window as I did every morning to wave goodbye, and it hit me. It hit me literally in the guts. There was no warning - no lead-up, no period of feeling unwell, no weight loss, no joint pain, no mouth sores, no rashes, everything that "they" say to watch out for, there was none of it. It felt like some hand of the universe reached in and flicked a switch in my body. I dropped my backpack. I ran inside. I ran straight to the bathroom. I missed the bus. Missing that bus was the start of many misses in life.
My Nonna moved as quickly as her 80-year-old body could carry her. She was so confused about what could have possibly gone wrong in such a short time. That morning was the beginning of my Crohn's disease journey. My Crohn's disease journey would consist of one invasive test after another, diagnosis, followed by misdiagnosis, followed by diagnosis again. From 1996 to 2011, I lost count of how many colonoscopy tests, how many barium x-rays and how many hours I lost in the bathroom. Finally, in 2011 my body reached a breaking point and I was admitted to the hospital where I would spend a month. Three CT scans revealed multiple abscesses, severe infection and abdominal obstruction. I underwent life changing surgery.
I remember my first colonoscopy clearly at age 14. I didn't want to do it. I didn't want to do any of it. It all seemed so absurd. I was missing school. The track and field tryouts were over, and I missed them. I was missing my friends. As much as a teenager wants to exert some sense of autonomy and independence in their life, I remember feeling in that moment how badly I just wanted to be a "kid”. I had enough insight to know that children should not experience colonoscopy tests or any of this, whatever this was. My healthcare practitioners were nice enough, but I still felt so violated, embarrassed and angry. I remember crying in my mom's arms and the helpless look on her face. She was thinking that this did not happen to children or adults for that matter in her generation. Inflammatory bowel disease was unheard of or extremely rare one generation prior. At that time in 1996, several treatments were discussed, such as immunosuppressants, steroids and anti-inflammatories. As overwhelming as all of the information was to me, I very much remember possessing a feeling of hope. Overhearing a hushed conversation between my mom and a gastroenterologist gave me hope. He said along the lines that these "problems" did not exist in young people 20 years ago, and if they did, they were considered isolated or rare. In my oversimplified 14-year-old logic, his comments gave me hope. I reasoned if my condition is considered relatively "new," then it should be reasonably easy to figure out what is causing it, no? What has changed in the past 20, 30 years? Our food? Our environment? Our general way of living?
I was a teenager at the dawn of information sharing and the global adoption of the internet. I believed there was nothing that humanity and scientific inquisitiveness could not accomplish. My bookshelves were full of books about my heroes -- Marie Curie, Albert Einstein and Frederick Banting. They were scientists of a different time, a time lacking technology but flush with curiosity and free of bureaucratic barriers. Whether I was naïve or too idealistic at 14, I was convinced that the treatments discussed in 1996 would not be treatments for very long. There must be better options just around the corner because science, technology, and innovation will only move quicker. Yet, 26 years later, Crohn's disease patients hear many of the same options of the past. Patients still heavily rely on the same symptom management treatments offered two decades prior. Sadly, many of those treatments fail, only work in the interim and come with widespread side effects.
In many ways, in the Crohn's disease community, I feel like an outsider. Many say to "own your diagnosis" or look at everything you have accomplished despite it. That narrative has never fit for me and always made me uncomfortable. Yes, I have accomplished many achievements in my life, but I truly would have rather done them without Crohn's disease. And, no, I do not want to "own" my diagnosis. I would rather no one "own" Crohn’s disease. In fact, my motivation for no one to "own" this is what fuels me; it is what drives me to educate, share, advocate and push for better treatment options for patients and encourage coordinated curiosity amongst research into discovering the underlying causes of Crohn's disease. The intelligence is there, the research is happening, but those researchers need support to get their discoveries from the lab bench to the patient. It is for this exact reason why I support organizations like Propel a Cure. The time for coordinated action on Crohn's disease is now.