Survivor's Guilt

This is only a story. It is not meant to scare anyone out of treatment or surgery. It's simply meant to tell the story of a beautiful young women I had the pleasure of knowing.

Keeping it secret... and not keeping it secret

I was diagnosed with Ulcerative Colitis during my senior year of high school, but I hid it. Terribly, but I tried. I didn't talk about my condition much and no one other than close family knew what my actual diagnosis was. Years after high school I told more people. No, I wasn't becoming more comfortable with it. I just knew I had to tell them in order to keep my job or be excused from school. Fast forward a bit more, around the end of 2014 I started sharing my story on my website and social media. Partially out of empowerment, partially out of boredom from being placed on bedrest after a total colectomy. The more I shared, the more I met others who seemed to be going through the same, or similar situation as I. I wasn't always consistent with posting and most days I figured no one really cared. I mean after all, I'm not that important and there are other people out there that do the same thing (but better).

Building a bond...

December of 2016 I got a message on Facebook. It was from a girl I'd attended high school with. We never really had a relationship. She hung out with one crowd, I with another. Neither of us were "bad" or "wrong." Our paths just never crossed. I was quite surprised to find her in my inbox, even more surprised when she began asking me questions about surgery. Although curious, I answered her questions just as I would answer anyone else's - without hesitation. She didn't have IBD. She told me she had a very serious genetic condition that required the removal of her colon. She was worried. Scared. She didn't know much about ostomies, or surgery in general. I gave her my number and we texted just about all night that night. Over the next few weeks we came to find out that she was actually having the same J-pouch surgeries as I did AND she even had my surgeon! I remember how we laughed so hard together when my surgeon told her how I came to my consultation with a notebook full of questions! I used that little scenario to explain why she shouldn't be hesitant to ask questions. Getting to know this person was a privilege. She was such a beautiful person with an amazing heart. As our relationship grew stronger we would text and FaceTime during all hours. I'll never forget the night she FaceTimed me to guide her through changing her (ostomy) bag.

We are the same age. Around the same weight. Same ethnicity. Same education. Same surgeon. I realize there is so much more to it than this, but it's what comes to my head every single time I think of her.

Unfortunately my friend passed away. I'm not 100% sure of what exactly happened. I didn't know her long, but I am so blessed to have known her for the time I did.