CROHN'S ADDS TO STRUGGLES OF 12-YEAR-OLDS
Being in middle school is hard. Add a chronic disease, and it is even harder. "I couldn't really believe that I had a disease, 'cause I didn't think that could happen to me. But then I met other people that had it, and I didn't think I was the only one anymore."
That was 12-year-old Alex Peck's first reaction to the news that she had Crohn's disease.
Crohn's disease is a chronic inflammatory bowel disease that affects the intestines and digestive tract. It is found in both men and women and generally affects patients who are in their teens or early 20s. Patients can go into remission, but the disease can return, sometimes becoming worse.
Y-Press interviewed Alex and Brianna Tull, also 12 and a Crohn's disease patient. To get a medical perspective, we interviewed Dr. Judy Cho, assistant professor of medicine at the University of Chicago and a gastroenterologist who does research into possible genetic components of Crohn's.
Both girls said it took doctors a while to diagnose their conditions. Alex first noticed something was wrong with her health when she was in kindergarten. But the diagnosis didn't come until she was 10.
"I kept getting all these stomachaches and stuff, and they thought I was lactose intolerant, but then they figured out it wasn't that," she said.
For Brianna, it was "about a year ago, when I started to get high fevers."
Dr. Cho said the symptoms of Crohn's can vary.
According to Alex, the general symptoms of Crohn's are headache, stomachache, nausea and vomiting, "but that doesn't happen to me." Brianna added, "Really high fevers, like 105, and a lot of cramping."
Crohn's also can cause diarrhea, ulcers, bowel obstruction, poor absorption of nutrients, and inflammation of the large intestine. Complications can occur in the intestinal area, on the skin and in the joints, spine, eyes, liver and bile ducts.
"All Crohn's is different in everybody because everybody's body is different, so they don't know what really bad is. I mean, since I've had it for like five years or six years, it's gotten worse. Like I had ulcers, but those are all gone now because of the medicine," said Alex.
Both girls' lives are greatly affected by Crohn's disease, which has no cure. The day before her interview, Brianna was in the hospital. Alex had two blood transfusions over the summer. Last year, Brianna missed about two months of school; Alex missed two weeks.
"I want the kids to know mostly that I'm not missing school for just a little stomachache. It's like a huge one," said Alex.
Neither girl believes the disease should affect a real friendship, although not many kids truly understand their conditions. "Some of my friends understand, and some of them have no clue what (Crohn's disease) is," said Brianna. "I can't do a whole lot with my friends if I'm sick."
"If they're your real friends, they'll stay your friends," Alex added.
Families are affected, too. "I think it really does affect my mom's work, 'cause when I'm in the hospital, she always spends the night with me. So she takes off work for a long time. And (my parents) get scared . . . when it's really bad," Brianna said.
Siblings are sometimes sympathetic. "When I'm in the hospital, my brother goes to my grandparents usually, and he's nicer to me," Alex said.
But not always. "My sister thinks that if she drinks out of the same cup that I do, she'll get the disease," Brianna said.
Both girls say certain foods make them sick. Brianna can't have dairy products or hot dogs. Alex said she can't eat "popcorn, things with shells, like nuts, things with seeds like strawberries, or corn. And Coke hurts my stomach more that Pepsi does."
Both Alex and Brianna have one doctor who takes care of all their needs. Alex has to visit the doctor about once every three months, and Brianna goes about once a month. "I don't really not like going to the doctor, but I'm afraid she'll give me another medicine that I have to take, 'cause I already take 14 pills a day, and I don't want to take any more," said Alex.
Brianna shared her apprehension. "Sometimes I don't want to go to the doctor because if I don't feel good, then they'll make me go to the hospital, and I personally don't like the hospital."
The girls take many medications, and there are some complications. Alex said her growth has been stunted.
Research shows that Crohn's is not contagious or deadly. "Their life expectancy is normal," said Dr. Cho.
The girls agreed there is one thing that helps the pain go away -- sleep. "Most of the time I'll just get fevers, and I'll get a lot of pain in my stomach. And then if I go to sleep, usually the fever will go away," said Brianna.
The cause of this disease is not completely clear, but this much is known: There is a mutation in a gene called Nod2 that occurs twice as often in Crohn's patients as in the general population. Nod2 is responsible for encoding a protein the helps the immune system respond to some types of bacteria. If it is mutated, it is much more difficult for the system to fight bacterial invaders.
Dr. Cho says heredity is not all that contributes to Crohn's disease. "For example, we know that Crohn's disease is made worse by smoking."
Both girls emphasized that the disease should not be cause for shame. Kids with Crohn's only want to live a normal life.
"I'd like people to take (Crohn's) more seriously because most people don't even know what it is at all. Like when I first got it, I didn't know what it was at all. And there's not many books about it," said Brianna.
"Don't make fun of other people because they're different. I used to be really skinny because of Crohn's. People always made fun of me because of that, and I didn't like it," said Alex.
REPORTERS: Perri McKinley, 12; Jennifer Maberto, 13; Brittany Chubb, 13; Lindsey Burns, 12; and Kelly Daniels, 12.