From Jacob:

When I was diagnosed with Crohn's disease during my senior year of high school, March of 2021 I didn't think much about it. I just thought it was something I would have to deal with. Prior to my diagnosis I was struggling with chronic pain, no appetite, weight loss, nausea, vomiting and lack of energy, I didn't want to have a disease that got in the way of my life experiences. My symptoms were not managed and when I didn't feel good I would push through them. Unfortunately, my bad days far outweighed my good days, I did not want to miss out on activities and being with my friends during my senior year and I quickly became involved with Gamma Phi Circus at Illinois State University this past fall. I'd rather be involved while suffering than to completely lose out on these experiences.

 

To make a long story short, I spent most of December and January in bed. At the beginning of January I returned home from school (ISU) and my body would not allow me to just push through anymore. I spent days and weeks curled up in a ball from pain, barely eating and sleeping a lot. On January 28, 2022 the results of a CT scan showed a partial bowel obstruction and abscesses. I was hospitalized for the first time in my life, I spent 5 days in the hospital, was on complete bowel rest and had a procedure to drain the abscess. I felt hopeful that I would feel better since I was in the hospital. I was discharged on February 1st with the drain tube and bag along with a PICC line to receive intravenous antibiotics. My mom would drain and record discharge amounts from the bag, clean and change the dressing and administer my intravenous antibiotics. Once a week a nurse would come see me at home to check my vitals, get blood samples and change the dressing on the PICC line. On February 9th the drain was relocated to another part of my body to drain a different abscess. As time went on my hopeful feelings were diminishing. I continued to have follow up appointments that continued to result in additional follow up appointments with no end in sight. Appointment after appointment with Interventional Radiology (they were in charge of the drain) and Infectious Disease (they were in charge of the antibiotics and other medications). On February 23rd I woke up with a fever and after my mom made a few phone calls I had to go to the ER. A CT scan showed additional abscesses had developed so I was admitted for the second time on February 23. During this hospitalization I had an abscess aspiration and my drain was changed to a larger tube and repositioned.

 

I was discharged on March 1st and my mom was able to get an appointment for me with a gastrologist with the Digestive Health Center at Northwestern Memorial in Chicago. I felt lucky that I had an appointment the same week of my discharge from Central DuPage with a gastrologist from Northwestern and I hoped to receive an action plan that would actually make me feel better. Not only did I get an action plan, it was an expedited plan. I was told that the only way I could get better was with surgery. The following week I met with a surgeon and a week later I met with an ostomy nurse in preparation for my Ileoscopy which is scheduled for 3/29/22. Right now I don't know how to feel, this is something I just have to do, I don't have a choice if I want to feel better. I am not scared or stressed about it (yet). I am just sick of being sick and I want to feel better.

 

Jacob O'Neill