"Having 18 years of life one way and one day you wake up and your whole life changed" a life consumed by Crohn's Disease

April 4th, 2018 after almost two years of doctors appointments and unanswered questions, I was diagnosed with Crohn’s disease at 18 from a doctor that didn’t care or listen to my concerns. The opening from my small intestines to my colon was so close to closing permanently that they put me on steroids that gave me horrible side effects for months. I was then put on the Humira bi-weekly injection and it took 3 years for me to overcome my debilitating fear of needles and safely administer my injections independently. To this day I have a deep distrust in doctors and the medical field due to a long list of experiences I have had since June of 2016 when I first found evidence of my internal bleeding in my toilet bowl. No two people with Crohn’s are alike and the disease is wildly understudied and one of the most common misdiagnosis in women in America. Stress was a huge factor for me attempting to maintain my health and was always the reason I went on bedrest. Being a college athlete newly diagnosed with a disease most people have never heard of and being the only person on my team to have any dietary restrictions made my daily reality that I was not ‘normal’ like everyone else anymore so prevalent in my day to day life. Having 18 years of life one way and one day you wake up and your whole life changed. At 25 I still don’t feel as though I have properly processed my diagnosis or the trauma I have experienced in the last few years. In typing this I am even realizing how many years it has been. It was always something I wanted to ignore and pretend wasn’t real but I just caused more issues for my health. I do my best to manage my stress and my diet according to what my body likes or doesn’t like currently. My Humira has made a difference in my health and with the medication and diet I have gotten close to remission but one day soon I hope to get the declaration of remission. I have had 4 colonoscopies since 2018 and it is difficult to have to coach your grandparents on their first colonoscopies. Being removed from ‘normalcy’ is incredibly jarring and I felt left out of a lot of things for a long time because I couldn’t go out to eat or I was too fatigued or I couldn’t leave my bathroom. I felt tied to my house and like I lost my life. When I first got sick i lost weight at a very drastic rate but when I was put on the steroid I jumped in sizes overnight. I went from a 0 to an 8 and the prom dress I bought in February didn’t fit by April 18th-4 days before prom and 14 days after my diagnosis and prescription of the steroid. My bones hurt and I couldn’t finish my senior season of lacrosse at my college because my body was falling apart under the weight. None of my clothes fit me anymore and I never wanted to leave my house even if I could because I hated getting dressed and looking at myself. To this day I dont own full body mirrors because for years I couldn’t look at myself. The body dysmorphia I was left with still affects me to this day. It is hard admitting how much my disease really does affect me because I still want to believe this is just a sick joke.

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.