Coping With Crohn's
"Living with Crohn's I've faced many different obstacles. Some being that I was going through lots of pain earlier when I was not aware of what I had, and others being the diet that I have to follow now and the medicine I have to take every day. Even though this is quite a struggle, if I follow all the rules of living with Crohn's, I could live a normal life like any other kid."
Those words, an excerpt from an essay written by Gavin Turner, 12, of Florence, are a peek inside his world of living with a chronic disease. Gavin wrote the essay at the request of Dr. April Ulmer, his pediatric gastroenterologist of GI Associates & Endoscopy Center in Jackson. Ulmer, a Magee native, treats several hundred children with inflammatory bowel disease - either Crohn's or ulcerative colitis. She asked them to write essays titled "I'm Stronger than Crohn's" as part of a contest to win a trip to the Crohn's and Colitis Foundation of America camp in Georgia being held this week. Except for the registration fee of $150, the foundation pays the camp expense. Ulmer promised to pay the registration fee of the winner, but after getting the essays, decided to pay the fees for all six who submitted their stories. The kids left Sunday.
Ulmer came up with the contest idea after she and Jennifer Easley, a triage nurse at the center, learned from foundation administrators there has never been a delegation of Mississippi kids sent to the camp. "It's gonna provide them with a sense of belonging, and it's gonna provide them with an experience that will be unforgettable," Ulmer says. "The biggest thing we want them to do is learn from each other. Find that support system by finding kids their own age that they can talk to." Gavin is looking forward to the trip - his first plane ride.
His ordeal with Crohn's began several years ago when doctors constantly dismissed his headaches, nausea and eventually, hemorrhoids. "If he played ball, he would say, 'My head is killing me,' " says his stepmother Tommie Turner, of Florence. "I can't tell you how many days per school year that Gavin would actually come home and lay down when he got it in." But his parents knew something wasn't right. He was starting to look pale after being sick all of the Christmas holiday.
In January they went to see Ulmer, who, after a battery of tests including a pill camera screening, diagnosed him with Crohn's - a chronic disorder that causes inflammation anywhere from the mouth to the anus of the digestive tract. Kids with Crohn's can have a litany of symptoms. "Some of my kids who have small intestinal disease like Gavin can have symptoms like abdominal pain, can react to foods. Some kids have difficulty with gaining weight because the small intestine is where nutrients are absorbed," Ulmer says. "The thing about the diet, there hasn't been shown that there's any particular food that's gonna make your disease worse. It can just make your symptoms a lot worse."
For Gavin, avoiding raw vegetables, raw fruits, grains and chocolate tends to reduce flare-ups. "It hasn't been bad. I have to diet. If I mess up sometimes, I have to pay the consequences," Gavin says. "I learned that chocolate does hurt. I tried peanut butter before, and found out that it really doesn't hurt."
Destani Hall, 12, was diagnosed with ulcerative colitis at age 4 and Crohn's at 10. Her culprit is spicy foods. She's attended two camps in Texas through the foundation where she rode a zip line, danced and went canoeing. In her essay, she talks about being criticized by kids and adults because of her weight — a side effect of the medications she takes. "I have overcome this obstacle by doing things that make me feel better about myself," Destani wrote. She is an honor roll student and will attend McLaurin Attendance Center this fall.
Typically kids with ulcerative colitis will have abdominal pain and/or rectal bleeding, Ulmer says. A colonoscopy and an EGD are the best tests to diagnose Crohn's or colitis. The pill camera is instrumental in diagnosing cases when the disease is in the small intestine, unreachable with a scope. The child swallows a pill camera that takes about 60,000 pictures for eight hours as it travels through the digestive tract. The pictures are sent to a belt the kid wears. Ulmer watches the "eight-hour movie" a couple of times before a diagnosis is made.
"It's really remarkable technology," Ulmer says. "It's really changed a lot of the way we practice because it does allow us information and technology that we just didn't have before, and it's made a difference in the lives of a lot of my kids." Diagnosis is a process. Turner expressed aggravation about the month's worth of tests Gavin endured. "But it was worth the wait. It's worth the trouble, especially when you see the progression Gavin's made."He's gained 7 pounds. "You just want to be careful with kids. And you don't want to diagnose them with something general like irritable bowel syndrome," says Ulmer, "because even though that's an entity that exists, it basically means that there's nothing wrong with your gut, your gut just misbehaves. Once kids get diagnosed with that, people tend to stop looking. It's one of the worst things you can do is diagnose a child with that." article reprinted with permission of Clarion-Ledger