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Caitlin’s journey with an ileostomy

Caitlin M<sup>c</sup>Ginnis

Caitlin McGinnis

I had my entire colon removed, a j-pouch created and a temporary ileostomy.  This was a life or death situation.

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.

Meet Caitlin

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