My Story

Shawntel Bethea's Strory

Born and raised in Charlotte, North Carolina to a single mother who would later be diagnosed with Schizophrenia Paranoia, I spent my childhood raised back and forth between my mother and my grandmother’s home, due to my mother’s condition. It was difficult to manage but my family hid it well. I grew up timid and withdrawn. I’ve always had trust issues even as a child. Although my mother’s disappearance and reappearance in my life was at no fault of her own, it did affect me greatly.

Initially, as a child, I was like any other (health-wise at least). I never really ate too much; I was a decent size for my age. Unfortunately, the older I got, the more things began to change. Closer to my teenage years I began to open up. I made friends. In middle school I joined the soccer team, in high school the Tennis team was my life. My Tennis coach was actually the first to notice when I became ill. He would tell me I tire myself out too fast or comment on my energy levels during practice and matches.

Over time more symptoms began to arise. I was tired all the time; I experienced severe abdominal pain. Worst of all? Blood! Bright red blood was a constant, every time I went to the bathroom. Being young and embarrassed I chose to hide these symptoms. I feared the worst, so I chose not to acknowledge it at all.

Eventually I evolved from hiding my symptoms to frequent trips to the Emergency Room. Most visits I was dismissed with a diagnosis of “growing pains” or a “heavy backpack.” Symptoms became unbearable around my senior year (of high school). My final trip to the Emergency Room (that year), someone finally heard me. Instead of sending my family home, they sent us somewhere else: Levine’s Children Hospital. –Via ambulance of course.

I was terrified! My family is full of fighters. We don’t show fear. We deal with life and issues as they are given to us. With that being said, I put on a strong face and sucked it up! Many days, tests and two transfusions later (-which my mom was NOT happy about), lead us to a diagnosis! Ulcerative Colitis. The treatment plan was simple: Steroids. – My days on steroids turned into weeks, weeks quickly turned into years. After turning age 19 I lost my insurance and became so desperate I even purchased steroids online. (-NOT suggested, but lucky for me, nothing came of it).

Skip ahead a few years (as I never achieved remission), in 2013 I became very ill due to steroid usage compromising my Immune System. Once again, Emergency Room visit turned into a quick referral home. A few visits and demands from my grandmother later and WHAT DO YOU KNOW! They found the infection which resulted in surgery the same night. After that experience I was determined to live a better life. I found an (adult) gastroenterologist and we began our journey. Pills, injections, infusions. Treatment after treatment only amounted to failure after failure until I exhausted most, if not all, options. My physician had two suggestions: surgery or steroids.

I chose.. RESEARCH! Although my physician gave me a referral to see my surgeon in early – mid 2014, I would not see him until the end of the year. I studied so much to determine if I was really ready to live a life without a Colon.

I arrived to my consultation with around 60 questions in a notebook with pen in hand! We went through every one of them. My consultation may have lasted around 2 hours but I left satisfied. I admired my surgeon’s confidence not only in the surgeries, but in himself and his abilities. The day I was scheduled to have the first surgery I (of course) got another infection. I stayed in the hospital and unfortunately had to move my first surgery back a few weeks.

December of 2014 I underwent the first of a 3 surgery series: Ileoanal Anastomosis (IPAA or J-Pouch surgeries). I lived with a temporary ileostomy for 6 months until I could use my J-Pouch for good. Learning to manage life with an ostomy was hard. I didn’t know anything but I learned. July 1st, 2015 I had my ostomy reversed and finally experienced remission! Well, part 2, without the ostomy this time.

If I said I haven’t had any complications, I’d be lying. If I told you any of my life has been easy, that too would be a lie. But there is one thing I CAN tell you: I regret nothing.

Now? I love to work on my advocacy work, blog and just enjoy life. I currently live in Rock Hill, SC with my soon to be husband! My mom is still sick, unfortunately, but she is always in my heart and prayers.