My name is Macey Cabana and I am a junior at Lincoln High School. For graduation we must complete a research project, it may be on any topic you choose and I gladly chose to do my project on Crohn’s disease. When I was 5 years old I was diagnosed with Crohn's disease at Hasbro Children's Hospital. I remember waiting in the waiting rooms with bright yellow walls and animals scattered across, that did not make the waiting any less terrifying.By the confused look on my doctors face and the fear in mom’s voice I knew something was wrong. My doctor first ordered labs to see if a conclusion could be drawn from there. After some abnormalities shown in the labs, I then found myself in another waiting room. As I entered the dark room machines hanging over my head just waiting to take black and white pictures. Laying on the table just staring at the ceiling wondering how it all works. As I walked back to the room the black and white pictures covered the wall. I had never seen anything like, I was fascinated. The doctor uttered words to my mom that I could not comprehend. Next thing I knew I was laying on a hospital bed. Wires plugged into the wall monitoring my health, bags filled with all kinds of liquids above me flowing various things into my body. Looking around curiously at the blue walls with tools and medical instruments I had never seen before. Several doctors in and out questioning me on my symptoms. I must have been asked about my pain from 1-10 a thousand times. Dazing off as the night was getting darker, there were still no answers. After no success that day I was wheeled into a room where there was another girl around the same age as me was laying with her mom next to her. I wondered if she was experiencing the same thing as me. Sleeping was not an option, nurses in and out taking blood samples and monitoring my health. Periodically I would glance over knowing that my mom was always there. The sun rose and the birds sang, as started to wake up from a short night's rest. The sun shining as i laid in my bed next to the window. Already up my mom was consulting with the doctors. My stomach was growling, it was begging for food. The strict meal plan I had to follow was not cutting it. Then i saw a lady in the doorway with a cart of toys and games. The excitement filled me, I was so happy to finally see toys. While playing with the toys a tall man wearing a lab coat strolled in. He introduced himself to my mom and I then sat next to me on my bed. After conversing with my mom, he told me there was an answer. Being told you have a disease is not easy to hear. It makes you feel different and makes you rethink your whole life. I was a strong little girl and I did not want this to stop me from achieving any of my set goals. Being told you may not grow or may be overweight was devastating. My mom hiding the fear from me, but I knew she was affected. The doctors told us what needed to be done and we followed everything we were told to do. Occasionally I was visited by my grandparents, sister, brother, and dad. I loved seeing familiar faces, knowing family and friends would always be there in times of need. After three days long days of testing and finding heart wrenching answers, I was sent home. This was not the end of hospital visits and it will never be the end. I have grown from this and i will keep growing from these experiences. The biggest influence on my project was seeing patients struggle to maintain remission when going in for regular checkups. From my experience of being diagnosed I discovered what the problem for my project would be, and I learned how I wanted to help solve it. I found that there was a significant opportunity for patients to be helped in a way outside of being treated by doctors, and that there was a lack of action being taken to do this. My solution was create a blog with various ways to help maintain remission and receive feedback from various reliable sources. The blog I have created is linked below: https://crohnsdiseasedietplan.weebly.com
Joined Jan 11, 2018
Location: lincoln, Rhode Island Diagnosed: 2006
This website is associated with CCFA.org and is supported by an educational grant from AbbVie.
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