Imagine having an illness that gives you horrible stomach cramps and makes you have to go to that bathroom a dozen times a day. Yet, to the outside world, you look completely healthy.
Having to explain all of those trips to the toilet can make for some awkward conversations. This is what it can be like for people living with Crohn'sDisease and colitis. It’s believed that these conditions affect more than one million people in United States. About 10 percent of those are children.
Kids try really hard to keep their condition hidden from the outside world so they can fit in. But for one week out of the year, Camp Oasis, on Washington’s Key Peninsula is a place where kids with Crohn's and colitis can let everything be out in the open without having to explain anything.
It’s noon and the cafeteria is crowded with kids ages six to 17 wearing t-shirts and shorts. Announcements are made. There’s a dance coming up, the Dork Dance. Kids write down the songs they want to hear on a big sheet of paper taped to window.
“Don’t forget, over here on the window, we have the sign up for the dork dance, songs you’d like to here. Let’s keep that two per cabin please, and don’t forget your lunch meds.
"Go!” shouts one of the counselors into a microphone.
Lunch meds. A 24-hour medical team. Extra portable bathrooms dotted around the acre property. These are the small reminders that this is not an ordinary overnight camp.
Most of the year this is a YMCA camp called Camp Colman. But for this one week it turns into Camp Oasis.
Kathleen Newbold, the regional education and support manager for the Northwest Chapter of the Crohn'sand Colitis Foundation of America, says this is where kids from Idaho, Alaska, Wyoming, Montana, Washington and Oregon can open up about the illnesses they try to keep invisible.
“It’s not, we’re going to sit around the campfire and talk about our colons. It’s not that kind of thing,” laughs Newbold, who has Crohn's.
But a little colon talk does happen. Six of the campers have some type of ostomy. Waste from the intestine empties out at the stomach into a bag. One night these campers gathered in the common room to meet other kids who have the daily responsibility of managing their medical gear. It was a little slow to start.
“They weren’t sure what to say,” recalls Newbold. “And somebody said, ‘What kind of ostomy to you have? I have an ileostomy. I have a colostomy. What kind of supplies do you keep on hand? What sorts of wafers and attachments do you use?’ It was great! They stayed in here for an hour and asked if they could do this again.”
One camper named Fionna has been coming to Camp Oasis here every summer since she was six. She has Crohn’s. She’s dealing with a recent flare-up. When this happens, she isn’t able to eat any solid food. All of her nutrition comes from a liquid supplement that goes into her body from a tube that goes directly into her stomach.
“I’ve had five surgeries,” Fiona says quietly. “It can be hard at first but I think once you overcome the pain it helps.”
The surgeries removed feet of intestine that became scarred from too much inflammation. Many of the kids at Camp Oasis have had these sorts of operations. Fionna is 16, but could pass for a healthy 12-year-old. This is completely normal.
“A lot of kids are not absorbing nutrients as much as other kids do. Something that we warn the counselors about is never guess a kid's age, because you’re going to get it wrong. They look younger than they are,” says Newbold.
Looking at Fionna, you wouldn’t know she has pain that feels like she ate crushed glass. You wouldn't guess that on a bad day she has bloody diarrhea and has to make multiple trips to the bathroom.
She said explaining her needs at school can be hard.
“Hmm. Definitely teachers. I’ve had to go the bathroom and they say, ‘Oh you’re not allowed to or you have to stay more minutes.’ Or if I have to go to the nurse's office, they'll ask, ‘Why do you have to go?’ and I just want to go.”
The exact causes of Crohn’s and colitis are unknown. According to the Crohn’s and Colitis Foundation of America, genetics play a role, certain foods can be triggers.
Back in the cafeteria the head nurse, Therese Lux, is handing out medication.
“That’s the vitamin that’s going to make the afternoon!” says Lux.
She uses this time to check in with the kids.
“What’s been the best part about camp week?” she asks a boy waiting in line.
"Paddle boarding,” he says with a wide grin.
Lux, who works in the gastro intestinal department at Seattle’s Children's Hospital, sorts through a bin of labeled plastic bags filled with small bottles of pills and vitamins. She says the effects of Crohn’s and colitis can lead to children feeling very isolated.
“I see our kids struggling with a disease people don’t want to talk about because you don’t want to talk about you private bathroom business. You can’t tell anyone is ill so you don’t know the pain they feel.”
Lux says she sees the children blossom when they are at camp.
“Over the years I’ve seen hundreds of kids that it’s made such a difference in their life. It’s given them such confidence. And they hear about other kids’ stories, ‘Oh he has a letter jacket,' or 'He plays sports, I can do that!’”
Throughout the week campers hone their archery skills. They row canoes and kayaks in the lake. There’s also a climbing wall that’s about three stories high. The kids wear a harness and are spotted on the ground by fellow campers holding ropes. When they make it to the top they ring a bell.
“Can we try going down a little slower than we have the last few times?” asks a young girl who is proud she made it to the top but is nervous about the decent.
And like a typical camp, the older kids are training to become counselors.
This is what Gill is doing. He’s 17. His Crohn’s is in remission. He follows a strict diet to keep it in check. He’s a role model for younger campers.
“The condition in and of itself is talking about your G-I tract. So you answer questions every doctor’s visit about how you poop, which isn’t something that a lot of kids at this age necessarily seem comfortable talking about openly,” Gil says.
Being forced to talk about his bathroom results over and over again with adults has made Gil more mature. “It got me past that teenage 'cool' barrier," he says. "It’s helped me get past that and get more confident.”
Hanging out with other kids who face the same challenges makes these campers feel typical. For Fiona, it’s seven days free from shame.
“It’s like, you know you’re not embarrassed to go to the bathroom. And you're not embarrassed to like, you know if you have a g-tube or if you have a feeding, I have to cover it or anything. It’s like all fine and everything and everyone understands, so it’s all good.”
At the end of the week the campers leave with contact information for new friends who live in different states. Kathleen Newbold says it’s not unusual for campers to see a familiar face from their school, show up at camp.
“They didn’t know that that other kid had Crohn’s or colitis.”
