IBDanswers

KEN GOE
11/30/03

BEAVERTON -- Taylor Barton couldn't sleep, couldn't sit up, couldn't move.

Five days earlier, surgeons had sliced open his belly, removed his diseased colon and stapled him back together.

The surgery alone could have killed him. Now medication wasn't touching the eviscerating pain.

He lay on a couch in the basement room, in the dark, in agony, alone, tears rolling down his cheeks, silent, because he couldn't draw a deep enough breath to talk above a whisper. The cell phone his sleeping parents left to call them if necessary was just out of reach. Sitting up to get it was impossible.

Finally, he pushed himself to the edge of the couch and rolled off, hitting the floor hard enough to send another jagged jolt of pain slashing through his midsection.

Summoning every fragment of strength from a body wasted by nearly two years of debilitating illness, he crawled about 40 feet to the steps, inched his way up on his hands and knees and crawled another 30 feet to the door of his parents' room.

Exhausted, he lay outside the closed door until they found him in the morning.

Nobody could have foreseen this in 1997, when Barton threw for 4,047 yards and 56 touchdowns -- both Oregon records -- as a Beaverton High School senior. He accepted a scholarship to Colorado, then transferred to the City College of San Francisco, where he was the team's offensive most valuable player.

Showing weakness, admitting pain or asking for help never was part of Barton's credo, even after he transferred to Washington as a junior and contracted a disease that drained his body of blood, energy and life.

Barton remained true to the strong, silent, dedicated football ethos, right up until the day it almost killed him.

At Washington, Barton mostly backed up Cody Pickett. But he started against UCLA at the Rose Bowl in 2001, repeatedly stepping into the teeth of a ferocious pass rush to throw 44 passes.

He took a merciless beating. The Bruins registered four sacks and hit Barton hard enough to knock him off his feet 21 times. He got up after every blow, limped off the field with every change of possession, never complaining and never admitting injury.

Keith Gilbertson, then the UW offensive coordinator, raved about Barton's courage before returning to Seattle. Barton stayed in a Southern California hospital to recover from a concussion, a sprained foot and dehydration.

Battered as he was, Barton was willing to play the next week if needed. Football players, the saying goes, need to know the difference between pain and injury.

"You want to be known as the guy who fights through the small things, because you know everybody else has them," Barton said. "You don't want to be the guy who is going to the team doctor saying, 'Check this out, check that out.' "

When blood began appearing in Barton's bowel movements later that fall, he shrugged it off as a minor irritation. But it worsened quickly, and by January 2002, Barton had bloody diarrhea several times a day.

He went without solid sleep because he was forced into the bathroom in the middle of the night. He was anemic from blood loss.

But that winter Barton never missed an early morning conditioning workout or an afternoon session in the weightroom. He threw passes. He went to class.

In March, Barton called a family friend who is a gastroenterologist in Portland. She told him to see her as soon as possible.

Her diagnosis was ulcerative colitis, a disease in which the body's immune system attacks the colon's lining. Ulcers form. The colon stops functioning properly.

What triggers the disease, which afflicts 50 out of every 100,000 Americans, is uncertain. Doctors do not think there is a connection between the UCLA game and the onset of the illness.

Colitis is incurable but often responds to medication, allowing sufferers to lead a relatively normal life. Barton settled on the steroid Prednisone, which quieted the worst of the symptoms.

He felt better. He was able to digest his food. He regained weight. As his health improved, he looked forward to the 2002 season.

As two-a-day practices began in August, the symptoms returned without warning and with a vengeance. The Prednisone no longer held the disease in check.

"We were staying in the dorms, and I couldn't sleep," Barton said. "I would wake up in the middle of the night three or four times and have to run down the hall to the bathroom. I was losing blood every time."

The frantic trips to the toilet continued after every meal. They interrupted every practice.

"If I drank any water or Gatorade, I would have to run to the port-a-potty," Barton said. "We would come in after practice, I would drink Gatorade because I was so dehydrated, and it would run right through me."

Practices became torturous endurance tests that Barton willed himself through.

Barton's parents, the UW coaches, the team doctors and some of his teammates knew he had colitis. But in most cases, it's manageable. They didn't know what was happening away from their view. And Barton wasn't sharing.

Nobody would hear him complain. In football terms, he steeled himself to play through it.

"So much of that was between Taylor and his doctors," Barton's father, Greg, said. "I knew some things, not as much as I should have known. But, then, that was Taylor's choice. I don't think he wanted us to know a whole lot."

Barton's mother, Heather, knew something wasn't right when she visited him in September. He picked at his food. He looked drawn. He made frequent trips to the bathroom. She told him to see a doctor.

The Huskies were off the next week. Barton drove to Portland, consulted his gastroenterologist and checked into a hospital. For five days he went on a liquid diet to quiet his colon. He took higher doses of Prednisone.

His plan was to do whatever it took to keep him in uniform.

When he returned to Seattle, complete with a virtual cocktail of medications, Barton remembers Pickett looking at him strangely and saying he couldn't recognize him. Barton weighed 210 pounds as a junior. Now, less than a month into his senior season, he had dropped to 190.

"If I jogged 10 yards, I was out of breath," he said.

Still, Barton played that week against Wyoming and completed all three of his passes.

He stayed upright for the rest of the season, functioning thanks to the medications and because the football player inside him would not quit. He kept his mouth shut, even as his condition deteriorated.

Roy Breen, Barton's colorectal surgeon, can't explain how Barton managed.

"I've never had anybody before play a contact sport like football with significant colitis, with cramps, abdominal pain and bloody diarrhea," he said. "I don't know how he did it. I can't imagine how he did it. Frankly, it's unbelievable."

After football season, Barton fixated on his degree. Some days he made 15 trips to the bathroom. He slept little. He conserved energy by leaving home only when necessary.

Quitting school now would have meant giving up his scholarship without completing requirements for his sociology degree. He refused to consider it, even after losing the supplemental health benefits allowed a scholarship athlete with remaining eligibility.

The UW athletic department had picked up the $600 worth of medications every month. When his senior season ended, he had to scramble to find a health insurance plan that would take him with a pre-existing condition. When Barton finished school in Seattle last spring, his weight had dipped to 175 pounds.

He moved home and worked for his father's company, Next Step College Sports, helping high school athletes position themselves for college scholarships.

Heather Barton thought her son looked slender. She knew he still was battling the disease and his energy level was low. But she thought things were under some measure of control.

Then, one day in late July, Taylor left to supervise a workout. Minutes later he returned to the house, staggered in the front door and collapsed, too exhausted to rise.

Heather Barton phoned his doctor, who advised consulting a second gastroenterologist, whom they saw the next day. She never will forget the doctor's words. Her son's colon was hopelessly compromised. It had to come out.

The problem was, Barton was so anemic from blood loss and had operated at a nutritional deficit for so long, he might not survive the surgery.

She remembered the doctor saying with chilling clarity: "Taylor, you've waited too long. You are bankrupt in every department."

The next meeting was with Breen. She remembered the surgeon being frighteningly matter-of-fact. The surgery is routine under normal circumstances, but this wasn't normal.

Barton's prolonged heavy use of Prednisone had so compromised his immune system that the chances of postoperative infection were markedly higher. It would be risky. But the colon was ready to perforate. The surgery was scheduled for 10 days later, Aug. 5.

For the first time, Heather Barton understood what her son had lived with.

"Imagine the area from your thigh to your ankle as an open oozing wound," she said. "That's what it was like."

Barton knew the situation and accepted the odds, even as he faced his mortality the night before the operation.

"That was when it hit me," he said. "I might never wake up. But I couldn't live anymore the way I was, always having to know where a bathroom was. Not being able to eat. Not being able to enjoy anything. To be driving in my car and have to pull over for a gas station or a port-a-potty. That's not a life."

Barton awoke after the surgery with an ileostomy, which empties his bodily wastes into a bag he wears outside his body. If all went well, Barton would undergo another operation in which part of his small intestine could be made to function as a substitute for his colon. Then he could dispense with the ostomy bag.

All has not gone well, starting with an infection probably due to the wretched state of his immune system. Within two weeks he was back in the hospital. Instead of knitting together, the seven-inch incision reopened.

He stayed in the hospital for 24 days, went home, but returned in barely a week, suffering from malnutrition and dehydration. He weighed just 159 pounds.

This hospital stay lasted another two weeks. While he was there, the line pumping nutritional supplements directly into his bloodstream became infected. His weight was up and down like a roller coaster.

His temperature soared as high as 104. It took nearly two weeks for doctors to bring the infection under control. When Barton left the hospital Oct. 17, he carried a football-sized bag full of liquid nutrition. A catheter runs from the bag to his chest. A pump sends liquid nutrients into his bloodstream around the clock.

Placed in a satchel so Barton is mobile, the bag has been a constant companion. When he has left the house, old friends have walked past him on the street, not recognizing the scarecrow with the satchel over his arm.

"No one would believe I was a football player who did what I did," Barton said. "But they can look it up if they want to. I was."

Sometimes, the football ethos resurfaces, such as the time Breen told him the sooner he weaned himself off pain medications, the sooner they could talk about the surgery to reconnect his digestive system.

That day, Barton went cold turkey. Within a few hours, he was in withdrawal, dry heaves straining against the still-sensitive incision.

The complications continue. Barton has undergone a surgical procedure to break up internal scar tissue from the original operation. He spent Thanksgiving in the hospital, fighting nausea and another infection that pushed his temperature to 104.5.

"They always tell you in life when you get knocked down, get back up," Barton said. "And it's true. But then you get knocked back down again. So you get back up. And you get knocked down again. It keeps happening. And it wears on you, man."

It wears on his family, too. His mother grieves for the carefree years, the girlfriends, the parties, the laughter her son never experienced.

"This has robbed him of a normal life," she said.

Barton has plans. He wants to coach football. And he wants to succeed so he has the kind of platform that reaches a wide audience.

"I want to raise money for this disease," he said. "I want to help young kids going through the same thing who are too embarrassed to tell their parents, who don't have anybody who understands what they're going through, who don't have people who will listen to them."

The tough guy has a soft side to him, something the illness brought out for others to see. It probably will make him a better coach.

"He is in a position now to teach life lessons," Greg Barton said.

Oregon State coach Mike Riley thinks so. Riley has offered Barton a graduate assistant's job whenever Barton gets back on his feet.

The two are close. Riley has stayed in touch with Barton since trying to recruit him in 1997. When he learned of Barton's illness, the bonds tightened.

Riley and his wife, Dee, are friends with former San Diego Chargers kicker Rolf Benirschke. Benirschke suffers from Crohn's disease, similar to colitis.

Riley invited Greg and Taylor Barton to several OSU games this season. They watched from Riley's office, above the north end zone.

Several weeks ago, on an afternoon Barton was struggling emotionally and physically, his cell phone rang. It was the receptionist in the OSU football office, who told Barton that Riley wanted him to turn on ESPN.

Barton flipped on his television to find an uplifting profile of Benirschke, who has put his life back together while battling his disease.

It was Riley's way of reminding Barton that no matter what happens, he is not alone. It's not weak to open your arms to friends and family and ask for help.

Nobody has to be that tough.