Stories about: Crohn’s disease

Caroline’s life-changing backpack

Girl getting measured at doctor's office before EEN appoinrtment
Caroline at a recent appointment getting her height and weight checked

When it comes to being active, there is no stopping Caroline Spaulding. Whether speaking on behalf of inflammatory bowel disease (IBD) legislation on Capitol Hill, performing in a ballet recital or lacing up her cleats for a soccer game, Caroline, 13, is a force to be reckoned with.

Her strong sense of determination is what carried her through her Crohn’s disease diagnosis and the 12-week, formula-only treatment plan — exclusive enteral nutrition (EEN) — that followed.

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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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