My name is Caitlin McGinnis and I am 27 years old. I currently reside in Nashville, TN in the USA. My ostomy story begins at the age of 22 when I was diagnosed with Ulcerative Colitis. My diagnosis was pretty easy to detect since my mother has the same illness. I immediately began on a pharmaceutical treatment plan. After a few months of no response, I began intravenous infusions as well as oral medication. When this didn’t work, I began an additional treatment of a steroid. Well, the steroid worked very well (besides the chubby cheeks and bloated belly-see picture). My symptoms subsided significantly and I was feeling much better. This good feeling only lasted a short time.
Towards the end of 2010, I began feeling more sick even with the steroid and other medications treatment. My symptoms were more prevalent than before and much worse in terms of pain and discomfort. I began not eating and lost weight and was in extreme pain constantly. It wasn’t until February 8, 2011 that I decided to go the emergency room. My parents drove me and expected an overnight visit, if that. They immediately admitted me and I was there until March 5, 2011. During these few weeks, I was not able or allowed to eat anything. I lost over 20 lbs and weighed about 89 lbs. My hair was thinning and my skin felt funny. I was all bones and no fat. I was still taking my medications even the prednisone which had no effect at this time. Eventually, my doctor sent a colorectal surgeon up to see me. The next day, I had my entire colon removed, a j-pouch created and a temporary ileostomy. This was a life or death situation. My doctor had told me that if I didn’t have this surgery, I wouldn’t be leaving the hospital because I was too sick to go home.
To this day, I’ve had a total of 8 surgeries (so far) mostly for complications with a recto-vaginal fistula and many attempts to reconnect the j-pouch. I decided to stop trying for the j-pouch and heal my fistula and instead keep the temporary ostomy for as long as I decide. I went back to school and received a master’s degree. I am currently a social worker at one of the top teaching hospitals in the United States. I’ve never felt healthier with my ostomy and I look forward to what my future brings.