Putting a Face to Crohn’s

After my last semester of school, I now know my disease will never hold me back.   Last December at the age of 19, I had my second small bowel resection.  At this time, they also did 3 strictureplasties as well as put in a temporary ileostomy.   When I first got my ostomy, I was disgusted by it and highly embarrassed.  I forbade my parents to tell anyone that I had an ostomy and spent a lot of time trying to find clothes that would hide my bag.  I was worried that my boyfriend would be just as disgusted as I was with the stoma protruding from my abdomen.  The odd thing was, my boyfriend didn’t care that I had an ostomy.  I slowly began to realize that it was kind of cool to have your intestines protruding from your abdomen, so after having the ostomy for about a month, I started showing my friends my ostomy named, “Luigi.”  I was intrigued to find out that most people not only didn’t know what an ostomy was, but when I showed them, they thought it was kind of cool.
My ostomy became extremely high out-put as my Crohn’s activity began to worsen and I was going to the hospital 3 times a week to get 2 liters of IV fluids.  To avoid having to get stuck again and again, we had a PICC line put in, and then I really felt like a champion.

At the end of January, I was put in the hospital and my doctor found rampant Crohn’s throughout my entire intestinal tract.  He then recommended that I not go back to school, but I wasn’t giving in.   If I could survive prior to the hospital, I was definitely going to be going back to school when I got out of the hospital.   I spent the whole week arguing with my doctor, and at the end of the week in the hospital, I won and he let me go back to school.  I was doing 2 liters of fluids a day in my dorm room and was having home health visit my room to change my PICC dressing and draw blood. I felt like a champion.  Instead of feeling sorry for myself, I took the opportunity to be a survivor.  I would show off my ostomy and PICC line to my friends and family with an air of pride, for managing to stay in college despite my frequent trips to the hospital and 6 liters of ostomy output.

Despite the tremendous obstacles to finishing school last semester, I stuck with it and finished with a 4.0 GPA.   I realized that if I could stay at school while being that sick, I could do anything I wanted to.  I could have let my disease hold me back and dropped out of school for the semester, but I am never going to let my disease hold me back no matter how sick I get, and having to deal with an ostomy gave me the confidence to back up that goal!

After this past semester I have made it my goal to share my story in order to help put a face to Crohn’s and stop the stigmatization associated with IBD.  I have started blogging (https://notsonormallife.weebly.com) and will continue to share my story in order to help others understand that they too can accomplish thier goals in spite of their disease.