CreditDoug Mills/The New York Times
OMAHA — Kathleen Baker stared at the seemingly simple question on the form distributed to members of the United States Olympic swim team. What challenges did she have to overcome on her way to qualifying for the Rio de Janeiro Games?
For Baker, one of about 700,000 Americans who have Crohn’s disease, the answer could fill a 70-page spiral notebook, and it is not as easy as WebMD. How does one begin to explain the physical and psychosocial challenges of living with a disease — a chronic, recalcitrant gastrointestinal inflammation — that can be embarrassing to talk about? How could she describe the medications that can lose their efficacy over time, or a fatigue so fathomless it can sap your will?
Baker, 19, has fought to prevent her health challenges from defining her. Talking for the first time about her condition, she said: “I found doctors who weren’t going to be just like, ‘You’re Kathleen with Crohn’s disease.’ I need to be Kathleen the swimmer with Crohn’s disease.”
Baker, who qualified for the Olympics in the backstroke — and perhaps a relay — seven years after receiving the life-altering diagnosis, will not be the first American Olympian with Crohn’s. The kayaker Carrie Johnson, now retired, made the first of three Olympic teams in 2004, a year after she was found to have the disease. Other prominent athletes who have the condition include the N.F.L. quarterback David Garrard, who had a foot of his intestines removed, and the former N.H.L. player Kevin Dineen, who played 16 seasons after learning he had Crohn’s.
Michael Kappelman, a pediatric gastroenterologist at the University of North Carolina who has treated Baker since she was 15, said his patients’ goals typically revolve around making sure the disease does not derail their dreams of going to college, getting married, having children or pursuing a career.
But going to the Olympics? When he started treating Baker, Kappelman said, he was not at all sure that was realistic.
Baker, who was born and raised in Winston-Salem, N.C., can remember clearly when she started feeling poorly. It was February 2010, the same weekend she set her first two national age-group records, shortly before her 13th birthday. She complained of fatigue and was running a fever. When lab tests came back inconclusive, her pediatrician, Barbara Clifford, referred her to a gastroenterologist for a colonoscopy. It was Baker’s first; since then she has had more than half a dozen.
“This is so bad, one of the worst stories ever,” she said. “I was on his email and an email popped up from my pediatrician saying the diagnosis.”
Her parents, Norris and Kimberley, sat down with her that night to discuss the disease. By then, she had typed “Crohn’s” into an internet search and had read what she called “horrible stories” about people having to have their intestines cut out.
“It was the worst feeling in the world,” she said, pausing to wipe away tears. “I love swimming more than anything in the entire world, and I thought my swimming career was over.”
The next year was a blur of doctors’ offices and medical tests and illnesses, including whooping cough and a broken rib sustained during a violent coughing episode. The first Crohn’s treatment she was put on involved a daily regimen of more than a dozen pills, but it was ineffective.
Eighth grade was a nightmare, Baker said. Already thin, she lost more than 10 pounds, prompting her mother to feed her a cheeseburger and a 500-calorie piece of cheesecake each night to try to keep her weight up.
“For years afterward,” Baker said, “I could not eat those foods because I hated them so much.”
When people at school or at swimming commented on her weight loss, Baker told them she was dealing with stomach problems.
“I didn’t want to be known as that sick kid,” she said.
Her health began to stabilize after her treatment was changed to incorporate monthly intravenous infusions that consumed most of two days, including one for recovery. But after a few years, the infusions ceased to be effective, and Baker began a regimen she continues to follow that includes giving herself biweekly injections in the abdomen.
As Baker sought to manage the disease, training through bouts of stomach cramps, nausea and diarrhea, her parents and older sister, Rachel, strained under the weight of her struggles. Kimberley Baker sometimes excused herself to take a shower just so she could release the tears that she held back in her daughter’s presence. Rachel, who swims at Washington & Lee University, struggled to understand why the disease had targeted her sister and not her.
“Of course, I’ve thought ‘why not me?’” Baker’s sister wrote in an email. “It’s hard to watch someone you love suffer, but especially in this case, since we’re close in age, do the same sport, and she was so good while I was never going to go to the Olympics. So it seemed like I should be the sick one, not her.”
Baker’s determination sometimes makes her a difficult patient. It was with great reluctance that she agreed to limit her training to one pool practice a day. Her parents, doctors and coaches have all grown exasperated trying to persuade her to back off during training, or to forgo it altogether, when she is experiencing Crohn’s flare-ups.
“It was always very challenging to get Kathleen not to swim,” said Dr. Clifford, her pediatrician. “It felt like punishment to her.”
Despite spending, as Baker described it, “a lot of high school and my childhood in doctors’ offices,” she steadily climbed the competitive ladder. She won four medals at the 2013 world junior championships and finished second in the 200-meter backstroke at the senior nationals the next summer. That qualified her for the 2014 Pan Pacific Championships and the 2015 World Championships in Kazan, Russia.
In March, as a freshman at the University of California, Baker placed second in the 200-yard individual medley at the N.C.A.A. Division I championships but struggled to manage the cumulative stress from the Pacific-12 Conference championships and the N.C.A.A. meet. As a result, she chose to skip the 200 backstroke at the trials and concentrate on the 100.
The eight-contestant field in the final included the 2012 Olympic gold medalist Missy Franklin and Natalie Coughlin, a former world-record holder in the event. Baker set a personal best of 59.29 seconds to finish 27-hundredths of a second behind the winner, Olivia Smoliga.
When Dr. Kappelman, in North Carolina, found out that Baker had made the Olympic team, he said he called his wife and his parents and then stepped outside his office and announced the news “as if an amazing thing had happened to my own child.”
Baker’s experience on other international trips has made her adept at filling out the medical forms required by the World Anti-Doping Agency and packing her medical kit, including syringes and extra dosages of her medicine in case of emergency. The super bacteria in the waters off Rio do not worry her; Baker knows from gastrointestinal disorders.
“There’ve been times where I’ve said, ‘There’s no way I’m going to go on an international team,’ but somehow it’s worked out,” said Baker, who reported this week to a pre-Olympic training camp in San Antonio. “I’ve gotten healthy enough to swim well.”
Well enough to grace the biggest international stage in sports.
“What this means to me,” Baker said, tearing up again, “is on a whole ’no other level.”