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Riverhead grad tackles his disease head-on

06/16/2016 12:00 PM |

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In January, as Jesse Patriss lay in a hospital bed recovering from his fourth surgery in just a year, he took a moment to think about the future. By April, he thought, he’d finally be feeling better and on a path back to a normal life.

His medical condition had already wiped out a year of college, derailed his baseball career and ruined his appetite.

But as the months passed, he only felt worse.

“It’s frustrating because when I’m not feeling well, people will come up to me and they don’t really know that I’m suffering,” he said.

Last week, Mr. Patriss, 20, returned home to Wading River after a five-day stay at Mount Sinai Hospital in Manhattan, the latest battle in what’s become an all-consuming fight with ulcerative colitis, an inflammatory bowel disease. He had lost almost 30 pounds since January and now required IV infusions for nutrition.

His latest setback came at an inopportune time. Just a few days after returning from the hospital, he was set to lead a team of about 40 people on a one-mile walk for the Take Steps for Crohn’s & Colitis Foundation of America. He’d decided to fight his disease head-on and not shy away from calling attention to a disorder that can often be uncomfortable to discuss. The walk, in Massapequa, would be his first step.

He came up with a team name of “Guts Over Fear,” ordered T-shirts and set up an online fundraiser to raise money for research for Crohn’s disease and ulcerative colitis, similar disorders that both affect the digestive tract. As many as 1.4 million Americans have the chronic conditions, which have no cure, according to the Crohn’s & Colitis Foundation of America.

Mr. Patriss never doubted that he could finish the walk, even in a weakened condition.

On Sunday, with his friends and family behind him and clear skies overhead, Mr. Patriss completed the walk and could finally say for the first time in months that he felt well. He could begin to see a light at the end of the darkened tunnel.

“It was crazy,” he said Monday. “The last couple days have been a very noticeable difference from the last four months. I feel great again today and it’s just getting better every day.”

His family — including his parents, Sueann and Glenn, and siblings, Glenn, 23, and Alyssa, 25 — have been by his side throughout his ordeal.

“He’s an athlete,” his mother said, “but I’ve never seen the drive coming out of him like I’m seeing now.”

His story begins about four years ago, when as a sophomore at Riverhead High School he began to suffer bad stomach cramps. He first realized something might be seriously wrong when he noticed bloody diarrhea. He waited a few months before telling anyone because he was embarrassed.

He was diagnosed with ulcerative colitis and, with medication, managed to live with his symptoms and maintaining an ordinary teenage life. He played baseball for the Blue Waves and was a standout shortstop, playing four years on varsity. He also played basketball.

After high school, he joined the baseball team at Suffolk County Community College, hoping to transfer after two years to a larger school and play Division I or II. On April 18, 2015, during a home game against Manhattan, Mr. Patriss was enjoying one of the best games of his young collegiate career. He picked up two hits, drove in a run and scored twice. But on a slide into home plate, he injured his shoulder, although he had no idea to what extent. He played through the injury and finished the game. About 10 minutes later, he couldn’t move his arm.

Top Photo Caption: Jesse Patriss, middle, joined by his brother Glenn, left, and cousin Danny Parisi, at Sunday’s walk for Take Steps for Crohn’s & Colitis Foundation of America. (Credit: courtesy photo)

In high school, Jesse was a four-year varsity player and played shortstop for three seasons for the Blue Waves. (Credit: Robert O'Rourk, file)

In high school, Jesse was a four-year varsity player and played shortstop for three seasons for the Blue Waves. (Credit: Robert O’Rourk, file)

Doctors soon determined that he needed surgery; it turned out that on top of the initial labrum tear, he had a torn rotator cuff and a tear in his upper bicep.

“They say stress triggers flare-ups in your intestines, so I was pretty stressed out with the shoulder surgery,” Mr. Patriss said. “In the middle of recovering from my shoulder, that’s when I started to get really sick with my intestines. It’s been non-stop.”

In July, he ended up at Stony Brook Medical Center in what had quickly become a life-or-death situation. Doctors informed Mr. Patriss that his colon was about to rupture. They recommended immediate surgery to remove it.

“My colon was very badly inflamed so it was either I pretty much die in the hospital or I get my colon removed, so it was a pretty easy decision,” he said.

His parents hoped to get a second opinion at Mount Sinai Hospital, but there was no time. His mother said they had no idea at the time of his shoulder injury how it could affect his other condition. The ibuprofen he took to deal with the pain was a likely accelerator for his colitis, his mother said.

“It was a perfect storm,” she said.

Two more surgeries followed to help his small intestine take over the job of the colon. An ostomy bag collected his stool out of his stomach in the meantime.

Mr. Patriss took a year off from school and could no longer play baseball. During the worst of times, he rarely even thought about playing again because all he could focus on was getting better.

Now, he has hopes of returning to the gym, working out again and possibly stepping onto the field once more.

He remains focused on raising awareness and money for his cause. His walk Sunday raised $7,400 — $3,700 of which came from his personal fundraising page — for the Crohn’s & Colitis Foundation of America. Another walk closer to home, in Stony Brook, is in the works for October. He also hopes to organize a golf outing.

Mr. Patriss said volunteers at Sunday’s event told him he had the largest team at the walk, which featured 2,000 participants, he said.

“I have a great group of friends,” he said. “It’s something that my family and friends really wanted to get behind me and give me some motivation to start to feel better.”

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CORRECTION: An earlier version misstated the total amount of money raised from the walk. It was $7,400.

Jesse's 'Guts Over Fear' group at Sunday's walk. (Credit: Courtesy photo)

Jesse’s ‘Guts Over Fear’ group at Sunday’s walk. (Credit: Courtesy photo)

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