Holy Angels athlete refuses to let ulcerative colitis knock him down
by Brady Gervais
“Fall down seven times. Get up eight.”
Kids are resilient. Scott Lohan is proof.
For the past year and a half, he has been in and out of the hospital and endured lengthy procedures because of ulcerative colitis, a chronic illness in which the lining of the colon becomes ulcerated and inflamed. The combination of inflammation and ulceration causes stomach pain and frequent emptying of the colon.
It’s really painful and, for an active teenager, can be embarrassing. But it hasn’t stopped Scott, 17, from living fully.
“This experience has left me a more appreciative, stronger person,” Scott said. “Day-to-day activities are seen as a gift instead of just a task.”
He was a typical teenager on the honor roll, active in sports, and social when his health went into the toilet. The summer before his sophomore year, he slept all the time. That was the first sign something was off. While sleeping throughout summer break might be normal for some teenagers, it wasn’t for Scott.
When varsity football began that fall at Academy of Holy Angels, Scott was a starter. Sixty days later, he was barely playing.
But his parents weren’t worried something was seriously wrong until Scott told his mom, Leslie, that he had blood in his stool.
“Mom, is this normal?” he said.
No way, his mom said.
His parents took him to the emergency department at Children’s – St. Paul, where he had a colonoscopy and endoscopy despite normal blood-test results.
He left four days later with an initial diagnosis of ulcerative proctitis – inflammation of the rectum. Despite being on medication for the following six weeks, Scott continued having diarrhea, weight loss, fatigue and bleeding. His care team at Minnesota Gastroenterology urged him to come back to Children’s, where he was admitted again.
Because of the bleeding, he was put on Remicade, a chemotherapy treatment that helps treat ulcerative colitis, the diagnosis he ultimately received, and other diseases. He also was prescribed steroids for another six weeks.
Scott’s parents were devastated by the diagnosis, worried their active child may never return to his “normal” life again. But Scott reassured his parents, “I guess I have to just keep grinding!”
He doesn’t lose well, his parents said.
The drugs worked for a few days. Scott went home for Christmas, but he continued to lose weight and experience severe pain. That didn’t stop him from playing hockey, though. A dedicated and determined athlete, he traveled with his parents to and from games so he could sleep. Scott would tell his parents that his medicine was working just so he could play. He wanted a normal life regardless of the disease.
In January, Scott landed back at Children’s. He received a Remicade booster, but the drug didn’t stand a chance. A few weeks later, a colonoscopy and endoscopy revealed that Scott’s colon was basically gone, Leslie said.
“I can’t see my kid decline anymore,” she told his care team.
Minnesota Gastroenterology referred the family to Pediatric Surgical Associates, where Dr. Bradley Linden met with the family to discuss a colectomy. When they left, they didn’t expect to hear back for a week. In just 48 hours, they learned Scott needed surgery immediately.
On March 17, 2014, Scott underwent an eight-hour surgery to remove his colon. He recovered for four days while learning about living with an ostomy bag before going home. Within 12 hours of being released, Scott was back at Children’s with lower-abdomen pain and needed surgery again to remove a blood clot that lodged in his pelvic cavity that caused his kidneys to stop functioning.
“He was a hot mess,” Leslie said.
So was she. Her son was in extreme pain. “I had a few ‘Terms of Endearment’ moments,” she said.
When Scott went back home, he was still in hell. He experienced withdrawal effects from no longer being on pain medication. He was angry and had cramps and the shakes, Leslie said.
By summer, he was doing better. He lifted weights with his teammates. He ran. He returned to the ice.
“He made sure he was going to have a normal life, as normal a life he could have with that stupid bag,” Leslie said.
In July, he underwent another procedure for a J-pouch, an internal pouch formed of the small intestine. It stores stool when there isn’t a large intestine.
By October the bag was removed and J-pouch connected. Scott’s drive, combined with the care and encouragement of the health care team, miraculously put him back in a high school hockey game for the Stars on Nov. 11 after spending 55 days in the hospital in 2014. Thankfully, and unlike last year, he was able to spend the holidays being comfortable and at home.
“Truly by the grace of God, he’s getting through it,” Leslie said.
Brady Gervais is an annual giving officer for the foundation at Children’s Hospitals and Clinics of Minnesota.