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Happy campers For a few days, kids with Crohn's and ulcerative colitis play at a place filled with understanding Tuesday, September 05, 2000 By Cristina Rouvalis, Post-Gazette Staff Writer
HIGH VIEW, W.Va. -- It's the second day of camp, and Jordan Valinsky and his pals in Cabin 6 already have doused each other with high-powered squirt guns, debated the merits of Britney Spears vs. Christina Aguilera and played a soccer game in which one boy broke his wrist.
Just another boisterous boyhood day in the sun -- until the medications come out.
Before dinner, doctors and nurses hand out big plastic bags of pills to many of the campers. This grim ritual is repeated at every meal at this special program of Camp Tall Timbers, sponsored by the Crohn's & Colitis Foundation of America.
Jordan, a sunny 11-year-old from Ross, swallows three blue Pentasa pills before dinner. It is part of his 15-pill-a-day cocktail to control Crohn's disease and ulcerative coliltis, serious inflammatory diseases of the gastrointestinal tract.
Across the long table, 12-year-old Ryan Bross gulps seven pills slowly. "I used to take Pentasa but I was allergic to it," he says somberly. "I am on steroids now."
Jordan and Ryan like this camp because they are just like everyone else. Here, campers don't have to be embarrassed about always running to the bathroom. Here, they don't have to explain why they have awful cramps or have stunted growth or why their cheeks puff out from steroids.
"I try to tell my friends about the disease, but they still don't get it," says Ryan, who lives in Ocean City, N.J., and who, like Jordan, has missed weeks of school.
"It can get annoying telling kids about it," Jordan says.
"Some kids tease you," Ryan says.
"Yeah, like 'Puffy Cheeks,' " says Jordan, who has experienced the steroid-induced puffiness.
Even when you are an adult, Crohn's and ulcerative colitis can be painful, disruptive, embarrassing diseases. Most people don't advertise that they have a chronic condition that causes such unpleasant symptoms as diarrhea and churning abdominal pain.
But an inflammatory bowel disease can be particularly isolating when you are a kid, when bad bowels are about the last thing you want to talk about.
"It's a bathroom disease," says Wendy Goldsmith, a 32-year-old camp counselor from Virginia who has Crohn's. "It's a humiliating disease even as an adult. It's worse for kids. When you are 10 years old, you do not talk about diarrhea."
Jordan's mother, Elaine, would have never dared send her son to a camp without doctors and counselors who understand the punishing nature of Crohn's. So the five-night camp attracted a big crowd -- 120 boys and girls from mid-Atlantic states, including a girl who traveled from Belgium after finding the camp on the Internet. It cost only $25 per camper because it was underwritten by foundations, corporations and individuals from five regional chapters of the Crohn's and colitis foundation.
Both Crohn's and ulcerative colitis cause diarrhea and abdominal pain. Crohn's typically affects the small or large intestine, though it may occur anywhere in the gastrointestinal tract. In contrast, ulcerative colitis strikes only the colon.
An estimated one million Americans have Crohn's or ulcerative colitis. Doctors say they are seeing a growing number of young children with these serious but nonlife-threatening diseases.
The symptoms of Crohn's and ulcerative colitis can be mild or severe. Some campers were not taking any medications, while others were on heavy dosages of drugs and were so sick that they hadn't attended school for two years.
Jordan Valinsky's case falls on the severe end of the spectrum. Crohn's is a disease of ups and downs, and while he feels fairly good now, he was so sick last year he spent a month in a hospital.
Blond with wire-rimmed glasses and a playful sense of humor, Jordan is a news junkie who loves watching CNN. He is well-versed on the ill-fated Russian submarine Kursk and the Republican and Democratic conventions.
He prefers "Newsweek" to Harry Potter. The fantasy world of Harry Potter is OK, he says, but "it's not real."
Jordan has seen a lot reality -- too much reality -- since the summer of 1998 when the simple act of digesting food turned into a nightmare.
His mother would complain to the pediatrician that her son wasn't growing beyond 4 feet, 1 inch. The doctor said not to worry. The terrible stomach aches, drastic weight loss and dehydration were dismissed as the flu. But Elaine Valinsky knew there was something terribly wrong. Her bubbly, straight-A son had become moody, and after losing 16 pounds, was a scrawny 42 pounds.
It wasn't until a gastroenterologist examined him in February 1999 that the family learned he had severe cases of both Crohn's and ulcerative colitis. He was immediately admitted to Children's Hospital.
"I started getting real sick," Jordan says. "I couldn't eat. I knew it was worse than a stomach ache. The worst part was not eating for three weeks."
He was immediately put on high dosages of the steroid prednisone to stop the inflammation. It caused him to gain weight and made him cranky.
During a month in the hospital and three months at home, he was bedridden. His joints ached from arthritis, another debilitating symptom of the disease. His fourth-grade teacher at Ross Elementary School, Barbara Lanke, taught him at home, and his friends visited and called him regularly.
One little girl called him "disease boy" on the playground, but she was sternly reprimanded, Elaine Valinsky says. Most kids welcomed him back warmly. "I think the environment at school really helped him," his mother says. "The kids were so sweet to him."
Dr. Samuel Kocoshis, a gastroenterologist at Children's Hospital, is seeing a growing number of young children suffering from Crohn's and ulcerative colitis.
"It is much more difficult for children," says Kocoshis, Jordan's doctor. "They tend to be shorter than their peers. Their intestines don't absorb nutrients. Most kids don't have appetites. Most of them can't eat enough to grow. They often don't enter puberty until very late, quite late. It can be traumatizing.
"Kids live in constant fear of having accidents, of not being close enough to a bathroom to make it on time."
Some children are in denial and refuse to take their medications.
But Kocoshis calls Jordan "a model patient."
In fact, Jordan is a celebrity of sorts among campers. But not because of his sickness. It's because of the $59,000 he raised, the most by anyone in the Western Pennsylvania/West Virginia chapter of Crohn's & Colitis Foundation of America
"How did you raise all that money?" one little boy, Jordan Aljuni, 12, of Silver Spring, Md., asks Jordan.
"I wrote letters," comes the answer.
The CCFA Pace Setter Walk and Run 5K will be held at 9:30 a.m. Sept. 16 at the Schenley Oval in Oakland. On-site registration begins at 8:30 a.m., with Family Fun Day games and activities after the walk/run.
For more information on the walk or Crohn's & Colitis Foundation of America call 1-800-627-6467. The Web site is www.ccfa.org. The local chapter can be e-mailed at ccfawpawv@aol.com.
Jordan Valinsky wrote dozens of fund-raising letters after being named in January as chairman of the CCFA Pace Setter Walk and Run later this month. The biggest check by far -- $50,000 -- came from May Department Stores Co., the parent company of Kaufmann's. Jordan's mother used to work for Tony Torcasio, a retiring May Co. executive who has Crohn's. So Jordan wrote him. The department store company contributed $5,000 for the walk and $45,000 to fund research.
There is no known cause of Crohn's, although the current theory is that "there is some genetic predisposition and some environmental trigger that causes the immune system to overreact or go awry," says Dr. Miguel Regueiro, clinical director of the inflammatory bowel disease center at the University of Pittsburgh Medical Center.
Until a cure is found for Crohn's and ulcerative colitis, people try to control the inflammation with drugs, and some have repeated surgeries to remove damaged intestines. Most people have to watch their diet.
The program at Camp Tall Timbers enables campers to do just that. It serves a Crohn's-friendly diet -- lots of bland starches and no foods like popcorn and peanuts because the kernels are hard to digest for many people with Crohn's. The camp also had three pediatric gastroenterologists on staff, and lots of bathrooms and extra port-a-johns.
It's easy for the campers to not dwell on the disease at the lush camp, nestled into the Blue Ridge Mountains, in the eastern part of West Virginia. It was the perfect backdrop for tubing, archery, horseback riding and squirtgun battles.
"They were out tubing on the river. The kids had a blast," says Joy Jenko, executive director of Western Pennsylvania/West Virginia chapter of Crohn's & Colitis Foundation of America. "Some kids were so sick they were on intravenous feedings at night. It was very moving."
Jordan and the other boys in Cabin 6 didn't talk too much about Crohn's or ulcerative colitis. It was often just a comfort knowing that other kids knew what they were going through. It was a comfort not having to explain why they were gulping down all those pills at mealtime.
Jordan is off the steroids, but still takes 15 pills a day, including anti-inflammatory agents. In addition he gets weekly injections of methotrexate, an immune modifier.
"Swallowing the pills is hard," Jordan says. "The small ones get stuck in my throat, so I take them with applesauce."
He has an unusual wish for an 11-year-old: "I want to take just one pill."
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