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Nolan manages Crohn’s disease one day at a time

Patients

Nolan

Commitment is one of Nolan’s strong suits.

An avid piano player and dedicated athlete, he knows what it’s like to juggle a busy schedule.

However, at 10 years old, Nolan had to take on a commitment that most kids do not: inserting a nasogastric tube (NG) tube into his nose and down into his stomach every single night to combat a digestive disease.

Crohn’s disease diagnosis

After suffering severe abdominal pain and bowel issues, Nolan’s family was encouraged by his pediatrician to see a specialist at Children’s Hospital Colorado.

There, he met with Digestive Health Institute doctor Deborah Neigut. She soon diagnosed Nolan with Crohn’s disease, a chronic disorder associated with inflammation of the digestive tract, which often causes pain and irregular bowel movements.

Given Nolan’s young age, his parents wanted to avoid medication as much as possible. They had concerns about long-term side effects, so Dr. Neigut came up with an innovative solution: enteral therapy.

Enteral therapy is a specialized nutritional treatment that puts patients suffering from Crohn’s disease into remission by helping their bodies absorb proper nutrients – a function hindered by the disease. Enteral therapy is performed in the evening. An NG tube is inserted into the stomach through the nose, where nutrients are then dispersed.

“We feel fortunate that we had this option because he was just a young boy,” said Jane, Nolan’s mom. “It was nice we didn’t have to start on medication right away.”

Despite his young age and the uncomfortable process of inserting the NG tube, Nolan decided this procedure was something he wanted to do himself.

The highs and lows

A week after Nolan started doing enteral therapy, he began having severe pain again. Jane brought her son to the emergency room. Doctors discovered that Nolan had developed pancreatitis as a result of the NG tube feeding nutrients into the wrong area.

This diagnosis came as a shock to Nolan’s parents and caretakers because Nolan had adopted such a courageous demeanor that he was not expressing the acute pain normally associated with pancreatitis. After spending five nights in the hospital, Nolan was able to return home where he continued enteral therapy every night, this time making sure that his NG tube was properly placed.

Soon, his abdominal discomfort went away, and a year after being diagnosed, Nolan was thrilled to learn that his Crohn’s disease was in remission.

“Dr. Neigut has been a great doctor,” said Nolan. “I know she really cares about me, and finding out I was in remission was wonderful news.”

One day at a time

Today, three years after his initial diagnosis, Nolan performs enteral therapy three to four times a week, which he will continue to do for several more years.

“He’s always been an independent, mature kid for his age. I’m amazed he is able to do what he does so many nights a week,” said Jane.

Now 13 years old, Nolan takes his life-long disease one day at a time. Having been in remission for two years, he participates in lacrosse, water polo and golf, and enjoys longboarding.

And after spending so much time at the hospital, he now has big plans for his future: Nolan hopes to become a doctor so he can help others like those who helped him.

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