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.”

Jake’s journey with Crohn’s disease began in January of 2016. Unlike many adolescents and teens with Crohn’s, Jake’s symptoms didn’t include severe stomach pain or bloody stool. He simply didn’t feel well and was losing a lot of weight.

“I knew something was wrong because I no longer had an appetite,” he says. “It got to a point where I felt like I couldn’t even look at food — a big red flag because I was always a pretty big eater.”

Concerned about the continued weight loss, Jake went to see his local pediatrician who diagnosed him with a viral illness, mononucleosis. But as the weeks passed, his symptoms worsened. He was referred to a local infectious disease physician, who ordered initial diagnostic testing.

“He had an ultrasound and a CT scan,” recalls Alan Goodstat, Jake’s father and senior vice president of a Florida-based addiction treatment facility. “Doctors told us his stomach was in severe distress and he needed to be admitted immediately.”

During Jake’s five-day hospital stay, he was diagnosed with Crohn’s disease — a form of inflammatory bowel disease (IBD) where one or more parts of a child’s intestinal tract become inflamed — and was quickly prescribed Remicade, a medication designed to reduce inflammation, control symptoms and allow the body to properly absorb nutrients again.

Unfortunately, the medication offered only temporary relief. Over the next few months, Jake was hospitalized three additional times due to the severe effects of Crohn’s disease. The third hospitalization was the turning point, his father says. “Jake needed an expert.”

Traveling the distance: From Florida to Boston

Alan and Frances, Jake’s mother, never stopped advocating for their son. They researched Crohn’s disease tirelessly, investigated various forms of treatments and identified the best pediatric hospitals for care.

Based on their research, the Goodstats traveled to Boston for an appointment with Dr. Athos Bousvaros, associate director of Boston Children’s Inflammatory Bowel Disease Center.

“Jake was very ill when he came to Boston Children’s,” says Bousvaros. “He had a lot of stomach pain, inflammation in his lower intestine and was experiencing painful urination.” These symptoms prompted doctors to think that the Crohn’s disease may have caused an infection along the outside of the bladder.

“Dr. Bousvaros so patiently gave me an education about what was wrong with my intestines,” Jake recalls. “He is probably one of the greatest doctors and people that I have ever met in my life. He was comforting and supportive and I felt I was in such good hands with him.”

Based on the severity of Jake’s condition, surgery was recommended and an appointment was quickly scheduled with Dr. Robert Shamberger, chief of Boston Children’s Department of Surgery.

“When I met Dr. Shamberger, I was sad, angry, anxious and feeling awful, physically,” Jake remembers. “He made me feel welcome, much less nervous and anxious and wanted me to understand what my condition meant.”

Surgery was scheduled and Shamberger performed an ileocecectomy, a procedure where a small portion of his intestine was removed and the healthy intestine was reconnected. “Jake did beautifully and the surgery was a success,” Shamberger says. “Once the inflamed segment of bowel was removed, his abdominal pain was gone.”

Jake-Goodstat-Crohns-team
From left, Jake’s surgical care team Dr. Shamberger, Jake and nurse practitioner Ellen O’Donnell

Living life and playing golf

Today, Jake is enjoying high school, playing golf and resuming his life. Moving forward, he will be monitored by his Florida physicians and will remain on medication to minimize the risk of disease recurrence. “With the surgery behind me, I am feeling the best that I have felt in a while,” Jake says. “I’ve put most of my weight back on and I am living a pretty normal life. I am able to wake up in the morning and know that I am going to be OK and have a great day.”

One of those great days included a cloudy September afternoon at South Florida’s Country Club of Miami.Jake-Goodstat-Crohns

“Being able to play in that tournament was an indescribable feeling, as I never thought I would again,” Jake says. “Throughout the tournament, I remember my dad saying, ‘the only number that we care about now is your inflammatory marker number.’”

Learn more about the Boston Children’s Inflammatory Bowel Disease Center.