Comrades Against Crohn's Honored for Battling Disease

They became close friends, then closer friends, bound by their affliction. Comrades in Crohn’s disease.

With high school graduations taking place around Orange County, Brandon George and Jake Smith were supposed to be part of those joyous faces flinging their caps into the air, graduating with the kids they grew up with.

Make that the kids they grew up with before illness ripped them from the classroom attendance list, and they had to make other plans. Independent study. Medication. Surgery. Ostomy bag.  

It has been a rough road for Brandon and Jake, a couple of Rancho Santa Margarita-area 18-year-olds with tough pasts and high aspirations. Yet they have persevered in much the same way as their able-bodied peers. And today, they will be recognized for their journey.

Valedictorians talk about surviving high school. Jake and Brandon talk about surviving.

They are the Honored Heroes of the fifth annual Take Steps for Crohn's and Colitis Walk at UC Irvine, where they will help provide the foot traffic toward a cure.

Proceeds from the walk will benefit the Crohn’s and Colitis Foundation of America.

• The walk takes place June 24, 4-7:30 p.m., at Aldrich Park at UC Irvine. To find out more about it, click here.
  
• To read about Brandon's team, click here; to read about Jake's team, click here.
• To find out more about Crohn's disease and colitis, click here.

About 15,000 people in Orange County have Crohn’s or ulcerative colitis, which are painful and medically incurable illnesses that attack the digestive system and can lead to colon cancer.

It's nasty, too. Crohn's can attack anywhere along the digestive route, beginning at the mouth and ending at the anus. Colitis inflames only the large intestine. Symptoms can include abdominal pain, persistent diarrhea, rectal bleeding, fever and weight loss. In short, general misery.

It can require, as it has with Jake and Brandon, hospitalization and surgery.

It affects about 1 in 200 people, about 1.4 million nationally, of which 150,000 are 18 or younger. Most people develop the disease between the ages of 15 and 35.

Jake was 14 when he discovered blood in his stool. Brandon was 8.

Their Story

A biopsy revealed that Brandon had inflammation in his colon that was consistent with ulcerative colitis, the initial diagnosis, but it was later determined he had Crohn’s disease. Given prescription steroids, he developed swelling in his face; though he kept his plight secret from his friends, he took his new nickname, “Cheeks,” in stride.

The medication was no longer working by the time he was 11 when doctors suggested he have surgery immediately.

“It happened so fast,” said Pamela George, Brandon’s mother. “I didn’t even have time to donate blood and get it screened to see if I could be a donor for my son.”

The four-hour surgery, the first of 10 over a seven-year span, was like “living a nightmare,” she said.

It was no easier on Brandon, who had his large intestine removed. He has a J-pouch—a reservoir for waste made from his small intestine—and an ostomy bag.

“That’s the worst part of the disease," he said, "it kind of wrecks your plans and takes over your life.”

Brandon, who lives in Trabuco Canyon, would have graduated from Mission Viejo a couple weeks ago if all had gone according to plan. But “according to plan” is not a phrase synonymous with his life. Or Jake’s.

Jake was always smaller than average, and while in the fourth grade his family took him to an endocrinologist. Two years later, he was no longer growing. He was also experiencing joint pain and stomach issues.

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His mother, Jackie, was always writing notes to excuse her son from physical education classes, one excuse after another without knowing what was wrong.

In eighth grade, Jake found blood in his stool. It was the flashpoint to a year of doctor visits, colonoscopies, tests and drug treatments for the 14-year-old. Finally, a specialized laboratory in San Diego led the Smiths to believe their son had Crohn’s disease—just like his best friend.

Shocked, the family turned to the Georges to help them navigate the journey ahead, to answer their questions, to draw on their experience.

At Trabuco Hills, a guidance counselor suggested independent study for Jake, who had once been a stellar student but whose effort fell off as his absences in class mounted. Just like Brandon, it was his sophomore year when he transitioned to independent study at Mira Monte High in Mission Viejo, an alternative school where students who miss class for a variety of reasons can work at their own rate.

Still, Jake identifies with those kids at Trabuco and their class of 2012. But, he admitted, “I think some of the people forgot about me.”

If they do remember him, they might want to know something.

Jake doesn’t go a day without pain in the stomach or joints, and it's been that way for thre years. “I have my ups and downs,” he said, “but mostly downs.”

Their Friendship

Jake is still able to make some light of his situation, which includes lots of trips to the bathroom. The name of his team for the fundraiser walk is called the Potty Breakers.

Right after they tell their stories to those in attendance, both boys will lead teams in the walk, although Jake—who has trouble moving about—may have to sit it out and cheer from the sidelines. The two teams will likely walk together, symbolic of the boys' relationship.

Having a best friend who you learn has the same disease is a “one in a million shot,” Brandon said, but it has made things “exponentially easier.”

They met in seventh-grade math at Rancho Santa Margarita Intermediate School, a couple of boys who liked to play video games Halo and Call of Duty. "We're the geeky type," Brandon said.

"We always say that someday the nerds will rule the world," Jake added.

Nerd or not, they have become so much more than gamer friends.

“By pure luck we were going through the same thing,” Jake said, “and it was a lot easier to go through it with someone who has it.”

Gaming via Xbox has been one avenue that has allowed them to stay in touch every day. They can chat. They have something to do together even when they feel too much pain to get outside. And they understand each other with an empathy and compassion that comes pretty naturally.

“Jake, in some ways, is an extended brother with the things we’ve been through,” Brandon said. “The benefit of it being one of your best friends who you can share all the personal issues with and not be shy about is invaluable. The nature of the disease, you can’t share that with just anybody, and it really helped us through some pretty tough times.”

Jake agreed.

"A best friend is a best friend," he said, "but when you share something in common like a disease like this that makes your life so restricting, you can form an even deeper friendship."

Their Future

Brandon has felt better over the past year—although there have still been issues—and been off medication since March. Things are actually getting under control. There has been talk of removing the J-pouch, which has failed, or perhaps creating a new one if he has enough small intestine.

“It’s been a hellish nightmare for four or five years,” Brandon said. “As horrible as things may get, I know there are people dealing with worse. But for my disease, I had it the worst. I learned I had to keep the right mindset the entire time or my body will shut down.

“What got me through day-to-day is that every day that I get through, I’m that much closer to getting better.”

And, he hopes, that much closer to a pilot’s license. He still has a few classes to attend in the fall at Mira Monte, then intends to take a job and begin working toward an A.A. degree and his goal of flying MedEvac helicopters. 

“I could combine my knowledge of the medical world,” Brandon said, “with my passion for flying.”

Recent flare-ups put him behind but Jake expects to finish his classes this summer. He said he always wanted to be a firefighter, but realizes that’s a dream dashed by Crohn’s. “I’m pretty sure that’s not going to be happening now,” he said. “But I’m hoping to get into something like the FBI or become a detective. I’d like that kind of work.”

His size—he is 5 feet 3 1/2 inches with weight that fluctuates between 95 and 108 pounds depending on his health—could limit him, he admits. But he has a plan.

“If I was doing something with the FBI I’d be doing something with computers because I’m pretty good with that," Jake said, "and you wouldn’t be doing too much physical stuff.”

And he has some advice for those who will look at him today at the microphone.

“You just have to look at everything in a positive way,” Jake said. “If you’re going to be looking at things in a negative way and say 'Why me, this sucks,' it’s not going to help.

“You have to stay positive. It could be worse.”