Living with Crohn’s disease: Ethan’s story

Crohn's can make the lives of patients more challenging.

But that hasn't stopped one boy, 8-year-old Ethan Stremmel, from living a fun-filled life.

At first glance, he looks like an average boy.

"I play ice hockey and baseball, basketball or street hockey in our driveway," Ethan said.

What you can't see by looking at this energetic and loving kid is the invisible battle that he fights everyday.

"We found that Ethan had Crohn's disease in March 2016," said Ethan's mother, Kimberly. "He was four years old. It was a complete shock to us. I remember when the doctor called me the results of the testing -- it was Crohn's disease -- and I just dropped the pen."

Kimberly says that the diagnosis of Crohn's, an inflammatory disease of the digestive tract, was out of left field since no one else in their family had anything like it in the past.

Dr. Matthew Coates, of Penn State Health, says that genetics aren't everything.

"At least some component of inflammatory bowel diseases do appear to genetic; however, not all," Dr. Coates said.

He says that it's clear based on studies of identical twins.

Less than half of the time did both develop IBD. Dr Coates added that it's estimated that as many as 70,000 new cases of IBD are diagnosed in the United States each year, most frequently diagnosed between the ages of 15 and 35.

Though, Ethan takes his diagnosis in stride. There are definitely challenges.

"My stomach sometimes hurts," he said.

Treating his bellyaches has been a process of trial and error.

"We started out with mild medications. He had a side effect to that and had pancreatitis. So he was hospitalized for a week," Kimberly said.

And even the medications that were a success, only lasted so long.

"It helped him immensely for awhile, about a year and a half," she said. "And then he just stopped responding to the medication."

As the search for the right medication continued, Ethan developed a blockage in his abdomen, also known as a structure, landing him back in the hospital for surgery.

"He had to have 10 centimeters removed from his small intestine to improve his symptoms."

Since Ethan's surgery this May, he has been feeling so much better, even getting clearance to get back on the ice.

Ethan knows that he will always have to listen extra closely to his body, but he is just happy to be playing with his big brother, and all of his teammates who support him like family.

As for advice, Ethan's parents say the best thing to do is reach out, ask questions and find a support system that will lift you up on the bad days and celebrate with you on the good days.

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