My Story

Shawntel Bethea Patient Advocate

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 I grew up timid and withdrawn.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, health wise I was like any other. I never really ate too much; I was a decent size for my age. Unfortunately, over time things began to change. Closer to my teenage years I started becoming more social. 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 and excessive amounts of 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 and 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), instead of sending my family home, I was sent somewhere else: Levine’s Children Hospital. –Via ambulance.

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. I put on a strong face and sucked it up! Many days, tests, procedures and two transfusions later – Of 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 health insurance coverage and became so desperate I even purchased steroids online. -NOT suggested, but lucky for me, nothing came of it.

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 visits turned into a quick referral home. Many visits and demands from my grandmother later an infection was found. Scar tissue 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 together. Pills, injections, infusions. Treatment after treatment only amounted to failure after failure until I exhausted most, if not all, options available at the time. My physician had two suggestions: surgery or steroids (again).

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 did a lot of research 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. Months passed, but unfortunately the day I was scheduled to have the first surgery I (of course) got another infection. I stayed in the hospital and was forced 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 (of remission), 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. Unfortunately, my mom is still sick but she is always in my heart and prayers.