16-year-old boy diagnosed with Crohn's disease, looking for answers

PITTSBURGH — A few weeks ago, Darien Sweitzer spent his 16th birthday enjoying the company of his family and friends. For Sweitzer lately, those brief moments of happiness have been outnumbered by a world of pain and confusion over the past few years.

After all, in a span of six months, this teen went from celebrating being cured of one disease, only to find out he had a much tougher battle on his hands.

“It’s hard to explain. It’s just like constantly waiting and waiting and waiting,” Sweitzer said. “I just want to be done with it.”

Sweitzer was formally diagnosed with Crohn’s Disease over the past summer and friends and family of the 16-year-old have been working to help him receive the proper treatment.

The two-year-long battle with the disease has felt like ages for both him and his family.

“Everything happened really fast,” Sweitzer said. “They did a few tests and said it sounds like this and the next thing you know I was in the hospital for weeks.”

Initially, Sweitzer was diagnosed with ulcerative colitis, two years ago. Ulcerative colitis is a chronic inflammatory bowel disease of the large intestine that causes inflammation in the digestive tract.

Eventually, Sweitzer’s case of ulcerative colitis would cause over 20 trips to the restroom per day.

Sweitzer took countless treatment and IV medications in hopes to remiss ulcerative colitis once and for all.

Unfortunately for Sweitzer, that never happened, which was a big concern for his mother.

“For about a year he was on medication,” said Sweitzer’s mother, Tammy Stark. “He started with the minor drugs and eventually went on to Remicade, which is the top-of-the-line but it wasn’t working.”

After nearly a year of trial-and-error trying to control the disease, there was one extreme way to get rid Sweitzer of ulcerative colitis: By removing his large intestine and replacing it with a J-Pouch for waste removal.

The removal of the large intestine would then remove ulcerative colitis from the body in one final hope of a cure. This would be needed to get Sweitzer back to living a normal teenage life.

As a precautionary measure, Sweitzer would undergo a total of three colonoscopy inspections to see if Crohn's was present.

Each time, pathology results came back in, showing no sign of the incurable disease, so the surgical trilogy was started.

Following all three surgeries, things appeared clear for Sweitzer and his family, who celebrated his extensive fight.

But the fight raged on.

Weeks following his final surgery, Sweitzer began showing symptoms of ulcerative colitis again.

“He said, ‘I believe I have ulcerative colitis again,’” Stark recalled. “’I feel terrible.’”

The systems returned. The bowel movements, the pain and the irregularities all began coming back as they once were.

Sweitzer was taken back to the hospital, this time at a mere 85 pounds.

It was then when he received a fourth colonoscopy, then an MRI. The MRI finally revealed that Sweitzer's new J-Pouch had been severely damaged. Sweitzer, after believing he was cured of ulcerative colitis, was now diagnosed with Crohn's Disease.

“It’s the worst thing in the entire world,” Stark said. “It’s pure torture. Every second of the day, it’s on my mind.”

With his new diagnosis, and his J-Pouch deteriorating, Sweitzer was referred to a specialist at the Cleveland Clinic, in Ohio. Like much of the rest of the family’s journey, getting to the result would be easy.

“It’s expensive trying to have a medical condition at home,” Stark said. “Let alone having to travel elsewhere.”

Unfortunately, the J-Pouch treatment he needs at Cleveland Clinic isn’t covered by Stark’s insurance’s network and they are required to pay in advance before their treatment.

“It’s scary,” Stark said. “Nobody wants to see their child in pain. I just want him to be healthy again.”

With Sweitzer's J-Pouch treatment less than two hours away, friends and family have been is looking to raise money through a GoFundMe account. To date, they've raised over $3,000 of their $10K goal.

“It just makes me feel warm inside to know people will give their hard-earned money just so I can get a test done,” Sweitzer said.

Today, this family awaits the day they are able to visit with J-Pouch specialists in the Cleveland area.

WPXI