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Caitlin’s journey with an ileostomy

Caitlin shares her story about being diagnosed with Ulcerative Colitis in her early twenties and the journey she took that saved her life.

Caitlin McGinnis

My name is Caitlin 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.

Visit Caitlin over at her blog site 

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