Stories about: Crohn’s disease

Getting back into the swing of things: Jake’s journey with Crohn’s disease

Jake-Goodstat-Crohns-Golf

It was a cloudy, September day at the Country Club of Miami in South Florida. Jake Goodstat, a high school sophomore and varsity golfer, approached the ninth green. He walked up to his ball with putter in hand, took a deep breath and gently tapped the ball to make the putt.

He says this was the hole where he cinched second place in the 2016 South Florida Junior Golf Tournament.

“It was the greatest feeling in the world to know that I placed,” recalls Jake, a Florida teen who underwent surgery two months prior to treat his Crohn’s disease. “Before my surgery, I would register for a tournament, end up in the emergency room and be admitted to the hospital.”

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Overcoming IBD: ‘I am bigger than my Crohn’s disease.’

Camden Vassallo Crohns DiseaseLike most high school seniors, Camden Vassallo of Norwell has a very busy schedule. The 17-year-old Thayer Academy student manages a heavy academic schedule, works at the local YMCA, is a two-sport, three-season athlete and is looking ahead to college.

But like nearly 800,000 children and adults in the U.S., Camden is also managing Crohn’s disease — a chronic inflammation of the gastrointestinal tract. The condition causes intense stomach pain, diarrhea, fatigue, bloody stool and weight loss in severe cases.

Although the disease has uncomfortable and sometimes embarrassing symptoms, Camden says Crohn’s hasn’t slowed him down or shaken his optimism.

“At first I struggled with having a disease that deals with a gross part of the body,” he says. “But Crohn’s doesn’t consume me and I don’t let it control my life.”

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Experience Journal: Growing up with inflammatory bowel disease (IBD)

back_to_school_with_ibdRoughly 1.4 million Americans suffer from inflammatory bowel disease (IBD), which refers to conditions that cause inflammation of the intestinal tract. Children with IBD may suffer from abdominal pain, cramping, blood in the stools and diarrhea. Early signs may include fever, fatigue and weight loss.

exprience-journal-logo-5 IBD presents in two main forms: ulcerative colitis and Crohn’s disease. While both are lifelong conditions, they can often be treated effectively with regular medication and diet management, surgical care and psychological support.

The IBD Experience Journal, created by the Boston Children’s Hospital Inflammatory Bowel Disease Center and the  Department of Psychiatry, includes stories and experiences from children, young adults and parents to represent the collective wisdom of families living with IBD. Here are some of their stories, in their own words.

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Carson Domey for president!

Carson Domey OFG Crohns

Most 11-year-old boys don’t own multiple dress suits, nor have they testified at a State Capitol. But Carson Domey is far from typical. As his Twitter handle suggests (@POTUSIT), he’s in training to be President.

This year has been a particularly productive one for Carson, as he takes cues for his 2044 presidential campaign. Five years ago, though, Carson was thinking more about getting a diagnosis than practicing politics.

Starting around age 6, Carson’s cheeks and gums would mysteriously become puffy and red. “It would come and go, and was something that only a mom would pick up on,” remembers Carson’s mother, Michelle. She took him to a dentist and an otolaryngologist, but the symptoms were always gone by appointment time, so neither doctor was concerned.

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