Foundation plans walk to help fund research into Crohn’s and colitis

The only way 12-year-old T.J. Chiello can describe the pain caused by his Crohn’s disease is to compare it to a seismic event. His stomachaches are “a volcano just sitting there, and one minute it just starts erupting.”

“It’s like all natural disasters in one in your stomach,” he said.

The disease affects his large intestine and often renders him nearly paralyzed, his parents said. All he can do for hours is lie down and wait for it to pass.

To fund research that might ultimately lead to a cure for his disease, the Crohn’s & Colitis Foundation of America’s Las Vegas office plans its sixth annual Take Steps Walk from 6 to 8 p.m. May 18 at Exploration Peak Park, 9700 S. Buffalo Drive, in Mountain’s Edge.

Registration for the one-mile walk begins at 5 p.m., and the event is to feature activities, food and music. It is free and open to the public, but donations are encouraged.

Last year’s event raised more than $40,000 and had about 450 participants, said Caitlin Shea, community development manager for the foundation’s Las Vegas area. The inaugural event raised about $14,000 and had 100 participants.

The foundation selected T.J., a Henderson resident, as its Honored Hero for this year’s walk.

For more information, to register or to donate to the walk, visit cctakesteps.org/lasvegas.

“There is no cure, (but) the Crohn’s and Colitis Foundation is helping to find one,” T.J. said. “That’s why I joined it.”

Shortly after being diagnosed two years ago, he became involved with the foundation and its youth council to meet other kids with the same disease. They usually meet every two months to do activities such as bowling, painting or pottery.

“They’ve shown me other people with Crohn’s disease, so I know I’m not alone,” T.J. said.

The foundation describes Crohn’s disease as a chronic inflammatory condition of the gastrointestinal tract. Symptoms may include diarrhea or constipation, rectal bleeding, frequent and urgent bowel movements, abdominal cramps or pain, fever, fatigue and more.

An estimated 1.4 million people in the United States have Crohn’s disease or ulcerative colitis, according to the foundation.

Shea said there are an estimated 7,000 people in the Las Vegas Valley with the diseases and about 3,000 of those are children.

“The patients I continue to meet are younger and younger,” Shea said. “The youngest I saw last year was 3. There are tons of teens and kids dealing with this.

“It’s very challenging to sit by and watch this and know there’s nothing that can be done for them.”

Shea was diagnosed with ulcerative colitis at 15 and has been on medication for 10 years.

“That’s hard on your body,” she said. “A lot of people without it don’t understand. ... These patients are silently suffering. Going to the bathroom and having stomach aches isn’t glamorous.”

Women and men are equally likely to be affected, and Crohn’s disease is most prevalent between 15 and 35. Ulcerative colitis is most commonly diagnosed in people in their 30s.

The cause of the diseases is not known, but research suggests hereditary, genetic and environmental factors may contribute to their development.

Ulcerative colitis is a large intestine disease that causes inflammation, sores and ulcers, which cause abdominal pain, frequent bowel movements and a bloody stool.

Crohn’s disease can affect any part of the gastrointestinal tract, but ulcerative colitis affects only the colon. Also, Crohn’s can affect all layers of the bowel wall, while ulcerative colitis affects only the lining of the colon.

T.J. has to adhere to a strict diet to make sure he receives proper nutrition because his disease limits the nutrients his body can ingest. For instance, he loves bagels and bread but can no longer eat them because they adversely affect him.

To help with his disease, T.J. takes medication, Humira, in a shot injected into what little fat his body has. In T.J.’s case, it is his belly and the back of his arms.

This treatment is painful, too, T.J. said.

“It feels like acid going through my body,” he said. “It stings like fire is burning you.”

Tom and Jessica Chiello said they just want their son to have a normal childhood.

“It’s a pretty horribly painful disease for anybody to have but especially for a kid,” Jessica Chiello said. “You hope some day in his lifetime they will be able to find a cure. You don’t want anyone to suffer the way I’ve seen my kid suffer.”

T.J. tries to enjoy as normal a childhood as possible. He plays tuba in the band at Mannion Middle School, 155 E. Paradise Hills Drive. He swims competitively and loves to jump on his backyard trampoline, though he wishes his parents would take down the protective netting around it. He also enjoys playing video games with friends and, in keeping with the vein of normalcy, does not like school “because it’s boring.”

For more information about the Take Steps event, visit tinyurl.com/LVtakesteps.

Contact View education reporter Jeff Mosier at jmosier@viewnews.com or 702-224-5524.