Brayden’s story: Beating severe ulcerative colitis with an expert care team

Seventeen-year-old Brayden describes the end of his 26-day hospital stay like this:

“Things got worse before they got better,” he says. “It was like I was climbing up a hill and I couldn’t see the peak.”

His doctor, Jeremy Stewart, M.D., Pediatric Gastroenterologist at Children's Health℠, knew that his team was on their last line of defense before they would have to pivot and perform a life-altering surgery to get Brayden’s disease under control.

Brayden’s parents, Keri and Keith, put their trust in the care team and their faith in God.

“Every morning, I logged into the MyChart app to see Brayden’s bloodwork, hoping to see signs that the medications were working,” Keri says. “And every morning, there was no improvement. It was heartbreaking.”

Until the morning when things finally changed.

Stomach problems

At first, Brayden’s symptoms seemed like a stomach bug or food poisoning. But when his stomach pain and digestive issues persisted for weeks, he went to the pediatrician, who sent him to a gastroenterologist. When Brayden’s symptoms continued to get worse and pointed to bleeding in his intestines, they went straight to the Emergency Department (ED) at Children’s Medical Center Plano.

Of everything that happened that day, here’s what stands out to Brayden:

“The nurses were super nice,” he says. “I had so many tests and I was so hungry because I needed to fast for some of those tests. And I wondered just how long that day would be.”

That long day ended with answers from Dr. Stewart: Brayden had ulcerative colitis (UC). UC is an autoimmune disease that happens when the immune system, which is supposed to protect you from germs, starts attacking healthy tissues in the colon. It can lead to severe stomach pain, diarrhea, intestinal bleeding and needing to go to the bathroom often.

The family knew that Brayden was at higher risk for developing other autoimmune diseases because he already has one, alopecia areata, where the immune system attacks hair follicles, causing hair loss. But that didn’t make it any easier to accept that UC is a lifelong disease with no cure. It’s a diagnosis that Dr. Stewart delivers with deep empathy because he also lives with an autoimmune disease: type 1 diabetes.

“We were relieved to have a diagnosis that provided direction,” Keith says. “But it was heartbreaking because while it wasn’t a death sentence, it felt like a life sentence for Brayden.”

Symptoms that wouldn’t stop

Dr. Stewart and his team started Brayden on a course of steroids to get his symptoms under control. Then the plan was to transition him to a different medicine that would ideally lead to remission (long periods with no symptoms).

“UC affects different people in different ways and there’s no one-size-fits-all treatment,” Dr. Stewart says. “Some people respond to low doses of treatment fairly quickly, while others may need stronger treatments and take longer to get symptoms under control.”

The steroids curbed Brayden’s symptoms enough for him to feel better and go home for a while. But every time he started to taper off the steroids and start medication that he could take longer-term, his symptoms would creep back. When his symptoms became even more severe, Dr. Stewart repeated the test to examine the inflammation in Brayden’s digestive system.

“My colleague who did the test called me immediately after and said we needed to admit Brayden to the hospital right away,” Dr. Stewart says.

An expert team working together

While his friends celebrated the final weeks of their sophomore year, Brayden checked into the hospital and began a new medication. The days that followed were grueling. He was vomiting daily and had lost nearly 35 pounds over the past four months.

Keri was grateful for the care team that showed him so much love – especially Rachael Kirn, APRN, PNP-C.

Kirn is part of a close-knit team of advanced practice providers who guide day-to-day care and hold a special place in their hearts for kids with complex GI conditions.

“We are the patient’s constant and familiar face and we focus on maintaining clear and compassionate communications with families,” Kirn says. “I saw Brayden almost every day, making sure he and his family understood the reasoning behind any changes to his treatment plan and ensuring they felt supported and heard.”

Brayden appreciated how Kirn and her team listened and helped him understand the medicines. He also appreciated the friends who brought him Legos to help pass the time. Soon, his whole window was full of Legos and his care team kept bringing him more.

Meanwhile, Dr. Stewart and his team continued to work together to identify other options that might help Brayden. He regularly brought Brayden’s care to a panel of his colleagues to discuss different approaches, medications or things they might adjust.

“We really appreciated that we had not just one doctor but an entire team of experts working together,” Keith says.

The prospect of surgery

The care team continued to explore other options for Brayden, but his symptoms persisted. Dr. Stewart gently explained to the family that if medicine couldn’t curb Brayden’s UC, surgery to remove the colon (colectomy) is the next option.

A colectomy can alleviate UC symptoms and help get patients out of the hospital. But it's a procedure that happens in stages and it can take months to get back to usual activities.

Keri knew Brayden was resilient and could get through surgery if needed.

“But it was just so severe and scary. No one wants that for their baby,” Keri says.

The last seconds of the final quarter

As Brayden’s friends were celebrating the last day of school, Brayden was getting a nasogastric (NG) tube, a small tube that goes through the nose and into the stomach. The care team hoped that if Brayden could temporarily get his nutrition through an NG tube, it would give his bowels a chance to rest and heal, while getting the nutrients he needed to build his strength.

Dr. Stewart and the care team determined they’d give the medication a little more time to show signs of improvement. They knew that some patients get better in the first few days, while others need more time.

“It felt like the last seconds of the final quarter, but we finally started to see the improvement we were looking for,” Dr. Stewart says.

Strength and resilience

Finally, Brayden’s care team started coming in with the news his family prayed for. His NG tube was removed and he started eating more and gaining weight. After 26 days, he could finally go home. As Brayden walked out of the hospital, the care team lined up in the halls and cheered, waving a banner they’d made for him with his name – and a border of Legos.

"I'd been inside, in a single hospital room for an entire month. And when I got home, it felt unreal. I needed to remember how to walk up stairs again," he says.

The next day, Brayden celebrated being home with his friends at the pool. And a few months later, tests revealed that Brayden was in remission. He’ll continue to see Dr. Stewart for checkups, close to home at Children’s Medical Center Prosper – but remission means he can get back to being a typical teenager.

Now Brayden has gained back his strength and all the weight he lost. He even did a Ruck Race, where he walked 12 miles with a 20-pound pack. Now a junior in high school, Brayden has a growing interest in photography and is considering pursuing it as a career or a side hustle.

Through it all, Brayden and his parents have found strength and resilience – and share some advice for families going through something similar.

Keri would encourage other families to keep their hope and faith alive and to lean on those around them for support. Brayden would tell other kids:

“Just keep pushing through, even when it feels impossible,” he says. “I’ve learned to face things head-on and they will get better.”

Learn more

Children’s Health offers expert and compassionate gastroenterology care across six locations including Dallas, Prosper, Plano, Fairview, Mansfield and Park Cities. Learn more about our programs and care team.