Parents of Las Vegas boy, 11, say his Crohn’s symptoms at first seemed cancer-like

It’s tough enough being 11. Try adding to it the burden of having Crohn’s disease.

Ben Etter’s experience began soon after he started school. On a daily basis, the northwest Las Vegas resident was dealing with symptoms of Crohn’s/colitis, after being diagnosed at age 7.

This year, Ben is the designated Honored Hero at the annual Take Steps for Crohn’s and Colitis Walk, set for May 14 at Exploration Peak Park, 9700 S. Buffalo Drive, in Mountain’s Edge. It benefits the Las Vegas chapter of the nonprofit Crohn’s & Colitis Foundation of America (CCFA). Other planned activities include live music, a food tent, kids’ entertainment, a raffle with donated prizes, vendor booths and a wellness area with educational materials. The Kids Zone is set to have a bounce house, face painting, a balloon artist and games.

Ben’s team is called Ben’s Creepers because of his love of the video game “Minecraft.” He recalled what it was like to be 6 years old and sitting in school when the stomach pains hit.

“It would hurt really, really bad. It was hard to pay attention,” Ben said, adding that he refused to go to the nurse’s office unless “it got real bad. Mostly, I just sat through it.”

His parents had no idea what their son was enduring. They did, however, take note of his bleeding gums when he brushed his teeth. Both symptoms led Ben to suggest that he stay home.

“We thought he just didn’t want to go to school,” said his mom, Amy Etter. “The worst part was his bleeding gums. … We took him to a pediatrician, who said, ‘It looks like someone took a chainsaw to his mouth.’ No dentist knew what was going on.”

They took him to a periodontist who said it could be systemic.

“We thought the worst,” Amy said. “We thought ‘cancer.’ ”

It took a year for a gastroenterologist and a pathology report to get a definitive answer. Ben is now on an injectable medication every two weeks and is doing well with it.

Ben is not alone. According to the CCFA, one in 200 Americans, both adults and children, suffer from digestive conditions. Symptoms can include rectal bleeding; diarrhea; loss of appetite; the urgency to have a bowel movement; and abdominal cramps.

Crohn’s disease and ulcerative colitis are often called “silent diseases” due to patients’ hesitation to bring up their symptoms. Kim Gradisher, executive director for CCFA-Nevada, said TV commercials for medications for irritable bowel syndrome and other intestinal problems are making it easier for people to open up about their condition.

“I think it’s because more and more people are being diagnosed every year. Those under the age of 9 is our fastest-growing population,” she said. “We currently have 1.6 million Americans who have been diagnosed with inflammatory bowel disease, which is Crohn’s disease and colitis, and I just think we’re seeing it so much more. Somebody can be friends with a person for 10 years, and they just find out that they have Crohn’s, and their friend happens to have it as well.”

“There’s no cure for it right now,” Gradisher said. “But 82 cents of every dollar we raise goes directly to research. There are things you can do to maintain your (health) and control your symptoms, but it’s the kind of disease where everybody’s different. A lot of times diet and lowering your stress level, those kinds of things, can assist, but it’s case by case. Doctors will set up a completely different treatment plan from one patient to the next.”

Gradisher said she hopes the event raises $40,000 to further research.

Onsite registration is set to begin at 9 a.m. and the walk at 10 a.m. To register, visit online.ccfa.org/lasvegas2016.

For more information about CCFA, visit ccfa.org.

To reach Summerlin Area View reporter Jan Hogan, email jhogan@viewnews.com or call 702-387-2949.