Today is eight years since my first kock pouch (continent ileostomy) surgery. I remember years and years of tears, notes to my parents, sleepless nights, anger, boat load of trial and error with psych meds, and utter disgust of what my life had become thanks to ulcerative colitis.
My life changed the day my parents told me they were on board with Kock Pouch surgery. I had a traditional ostomy for three years and fought it every day. I seriously cannot even put into words how much this bag on my stomach tormented me. I had tons of blockages, leaking, skin issues and basically looked at this thing that was thrust upon me as the worst thing in the world.
When I heard the words from my parents telling me they were with me in my desperation to undergo surgery to get rid of my ostomy, it gave me hope. I was a freshman in college at that time and knowing that after my first semester I would be on the road to a life free of an ostomy was what got me through so many days.
My ostomy leaked on my first day of school. I couldn’t be away in school like all of my high school friends. I couldn’t get excited for the future because whenever I did, something awful would happen.
I vividly remember doing a presentation in an early morning class that year of school. I was wearing insanely long baggy sweatpants because they were comfortable around my stomach and I didn’t care anyway. As I starred up at the rest of my class, tears filled my eyes. That moment was a reality check for me. I was so unhappy. I was so livid about what happened to me. I was pissed off at one of my doctors. I was upset that a lot of people in my shoes seemed to have a lot more success with surgeries than I ever did. I spent every waking moment pretending to be happy around other people but would relish the weekends where I didn’t have to be phony and could just be alone. I felt so different from most people my age and felt left out in many ways.
But the kock pouch surgery provided hope that I needed more than anything. I knew there were risks and while I couldn’t imagine firsthand what the downsides were, I didn’t care. With every fiber of my being… it was go through with the kock pouch surgery or be done with life.
I think about this time of my life because it is one that is easy to look back on and wonder “what in the world was I thinking?” After all, I did manage to accept my ostomy and it has made me healthier than I’ve been in years.
So, what was the big deal?
I had the rug ripped from underneath me constantly from the ages of 13-17. Then for two years I tried everything I could (including surgery) to live the way I never thought I’d have to think about. And nothing got better. I felt like I had no control over my life, my body, my future, everything. I lost the will to keep fighting because no matter what I did for years, it never mattered. It seemed like my fate was decided for me and my actions had no bearing on the outcome of my life.
It’s a terrible feeling to learn at such a young age that no matter how hard you try, how much work you put into something, or how much you sacrifice it doesn’t matter.
The kock pouch surgery provided me with an opportunity and a way my life could be that was of my choosing. Granted, it wasn’t a great option but was a lot better than how I had been living. My parents had to take care of me (and therefore needed to be okay with that) but this decision ultimately was my own.
It felt good to feel like I had some control over where my life was heading. Eight years ago today I took the first step on a journey that I had needed to take since two years prior. It was awful in so many ways but something I needed to do. I will never regret going through it. I will never forget what that whole experience did for me: it showed me that life wasn’t necessarily decided for me. It gave me my control back after six years of not having one ounce of say in how my life was going. It gave me my voice back. It paved the way for me to eventually accept myself and my body as is.