For many high school students, the toughest decisions they have to make is who to take to prom or when to take a college entrance exam. But for 17-year-old Jaycee, surviving a debilitating illness gives her the courage she needs to advocate for an entire population fighting Crohn’s and Colitis disease in Arkansas.
During her sophomore year of high school, Jaycee began experiencing stomach virus symptoms just like her sister, Olivia, experienced two weeks before. As Jaycee’s symptoms became more serious and persistent, her family knew they needed to seek treatment immediately.
After an initial visit to her family physician, the clinic sent Jaycee to a local hospital. There she was treated for dehydration and underwent a colonoscopy. Jaycee was diagnosed with Shigella, a bacterial infection of the gut that causes bloody stool. After nearly a two-week hospital stay, Jaycee and her family were able to return home but for Jaycee the pain continued.
Jaycee’s team of doctors continued to look for answers. A second colonoscopy confirmed the inflammation in the stomach was worse. This time Jaycee’s blood counts were so low, the doctors immediately gave her a blood transfusion. Jaycee was then diagnosed with Clostridium difficile or C-diff, a condition, according to WebMD, where typically harmless bacteria multiplies and attacks the lining of the intestine and can be life-threatening.
Two days before Christmas, Jaycee was also diagnosed with Ulcerative Colitis, a inflammatory bowel disease that causes abdominal pain and the colon to empty frequently. She began taking Humera shots then graduated to Remicade infusions. Because Remicade is a mild form of chemo, these infusions caused Jaycee to lose her hair.
The disease left her exhausted. She missed her entire sophomore year and began missing at least once a week during her junior year. “People would bully me because of this disease,” explains Jaycee. “It’s not like I chose this, but I have two good friends who have stuck around – Kristin and Leah.”
With medicine and treatments not providing any relief, it was time for Jaycee to make a difficult choice. With a new doctor in charge of her case, the team performed a third colonoscopy and discovered 1,000s of polyps growing inside her large intestine. The next choice was clear; Jaycee’s colon would need to be removed.
“We’d exhausted all options for remission and surgery was the next option,” explains Jaycee’s mother Kerry. “We let her make the decision. The physician knew that if we didn’t do something she would have cancer within the next 10 years.”
On February 15, 2016, Jaycee had her colon removed. The surgeon attached her small intestine to the rectum. For a few months, Jaycee needed an ileostomy bag to help remove waste from her body via a connection from her small intestine.
“We’ve had so much good come out of this than bad,” says Kerry. “It’s crazy to say, but she’s had to make life decisions that have robbed her of her teenage years for sure. Yet she’s had so many opportunities. She was a very shy girl and now she wants to make a difference with this.”
As of this April, Jaycee no longer needs the ileostomy bag. In the last two years, she’s made it her mission to educate others and share a message of hope. “I don’t want people to feel alone,” says Jaycee. “I want to let everyone know how serious and terrible this disease is.” This year, Jaycee serves as the 2016 Local Hero at the 7th Annual Take Steps for the Crohn’s and Colitis Foundation, raising awareness about digestion diseases and hopes to educate and inspire others.
According to the Crohn’s and Colitis Foundation’s Arkansas Chapter, more than 75,000 children suffering from inflammatory bowel diseases, this disease has one of the fastest growing patient populations of children under the age of 18. Thankfully, Jaycee wasn’t alone on her journey.
While going through treatment, surgery and recovery, Jaycee found her strength in the people that surrounded her. The Internet also connected Jaycee to support groups online for ulcerative colitis. This is where she met Emily, a young lady who lived several states away who was battling the same illness as Jaycee.
Jaycee and Emily are now best friends. Together, they’ve shared the ups and downs of the illness, even sharing surgery dates to remove their ileostomy bags. “We got to finish our journey’s together,” says Jaycee. “I didn’t know that I could have someone who is hundreds of miles away be a best friend. She really helped me through this and she’s the best thing that could have happened to me.”
While Jaycee’s fight is complete for now, she wants to do more to help others. “I would really like to be a pediatric nurse specializing in gastrointestinal issues,” says Jaycee. “I see so many kids who need GI specialists and they are struggling, it makes me want to help.”
If you or someone you love is suffering from inflammatory bowel disease or if you are interested in volunteering, please contact the Crohn’s and Colitis Foundation
of America Arkansas’ Chapter at www.ccfa.org/chapters/arkansas or call 501-590-8948.