Scout’s Eagle project serves young people with Crohn’s

Billy Kleinknecht recently became an Eagle Scout. (Pia Hallenberg)

When asked why he joined Cub Scouts in sixth grade, William “Billy” L. Kleinknecht, 17, laughed and said he joined for the same reasons many other boys join.

“I wanted to play with fire and get a knife,” said Kleinknecht, who stuck with the Scouts for many other reasons. He became an Eagle Scout on Nov. 3.

His service project was the production of 100 informational packages about Crohn’s disease and ulcerative colitis.

Kleinknecht was diagnosed with ulcerative colitis when he was 12, and he said there was very little information available then.

“They told me not to eat popcorn or anything else with small seeds in it and that was pretty much it,” said Kleinknecht, adding that he spent lots of time researching the disease with his grandmother. “We just couldn’t find much. It was hard.”

Crohn’s disease and ulcerative colitis are both inflammatory bowel diseases. With Crohn’s disease, the inflammation can be located anywhere along the digestive tract from the mouth to the anus. Ulcerative colitis typically affects only the large intestine or colon.

Kleinknecht spent weeks at a time in the hospital, and when he turned 15, some of the medication he’d been on stopped working.

“That’s when they had to take my colon out,” Kleinknecht said matter-of-factly. “I am feeling much better now. I’m feeling great.”

When Kleinknecht proposed his Eagle Scout project to Boy Scouts of America, the organization wasn’t too excited about it. BSA suggested he build a park bench instead, but Kleinknecht didn’t budge.

“This is what I wanted to do,” he said.

Kleinknecht contacted the Crohn’s and Colitis Foundation of America, which sent him stacks of brochures to include in the packages, and the teen website UC and Crohn’s, www.ucandcrohns.org. Because diet can be tricky for Crohn’s and colitis patients, he wanted to include a special cookbook in the information package.

“That became a little bit of a problem because you could only get one free cookbook per person,” said Kleinknecht, smiling sheepishly. “So I contacted 100 people and got them each to ask for a cookbook.”

When the 100 packages were done, Kleinknecht had made more than 7,000 copies and gathered up more than 1,300 activity books and pamphlets.

He’s hoping the packages – which he left with his gastroenterologist, Dr. Jamil Abou-Harb at Providence Sacred Heart Medical Center – will help other children or teenagers deal with the difficult diagnosis.

“It’s very painful. Sometimes you have to go to the bathroom a lot, and even when you feel better you can get a flare-up,” Kleinknecht said, adding that he can eat most anything now but that stress triggers flare-ups. “And it can be a stressful disease when you are in school.”

There is no cure for Crohn’s or colitis, a fact that also ads stress to a diagnosis.

“You can manage it but it never goes away,” Kleinknecht said.

The informational package includes brochures and pamphlets, pages for treatment and medication journaling, and suggestions for websites and support groups. There’s also a plan included that helps parents, children and the school staff figure out which accommodations a student needs.

Kleinknecht, who’s a senior at North Central High School, is really happy with how the project turned out. There are 25 packages left – the rest have been given to children and youths diagnosed with Crohn’s and colitis.

“I just hope I can help them figure it all out,” Kleinknecht said. “I don’t want them to have to go through what I went through.”

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