Jan 29, 2015Poised Under Pressure
When an athlete is diagnosed with Crohn’s disease, continuing to compete can seem overwhelming. Here’s how to help them tackle this difficult condition.
By Lauren Cahoon Roberts
Lauren Cahoon Roberts is a freelance writer based in Ithaca, N.Y., who has covered issues in health and wellness for a broad range of publications. She can be reached at: [email protected]
The first time Anthony Pass encountered an athlete with Crohn’s disease, he had no idea what he was dealing with. Then the Head Athletic Trainer for Football at the University of Florida, Pass thought the athlete simply had the flu.
But after running some initial tests, Pass and his colleagues determined the illness wasn’t viral, nor was it an infection. “This was a 320-pound lineman, who was obviously in distress,” says Pass, MEd, ATC, CSCS, who currently works as Associate Athletic Trainer for the football team at Texas Tech University. “After two days, his fever remained, and his stomach pain would not go away. We took him to the hospital, where doctors diagnosed him with Crohn’s disease.”
Not long afterwards, punter David Lerner also learned he had developed Crohn’s. Pass quickly had to become an expert on a disease that is shrouded in mystery and stigma. And he had to become an advocate for these athletes’ health.
“If you’re at a school like Florida or Texas Tech, the coaches are going to want that player on the field,” says Pass. “They may write it off as a stomachache, or question if the kid is faking it. You don’t want people questioning these athletes’ toughness, so you need to educate coaches and work closely with the athletes, helping them to still perform at the highest levels.”
A COMPLEX CONDITION
Crohn’s disease involves inflammation of the whole GI system, particularly the last part of the small intestine known as the terminal ileum, and it affects the entire bowel wall, explains Matthew Shields, MD, a gastroenterology and nutrition fellow at the University of Rochester (N.Y.) Medical Center. The condition typically arises during teen years to early adulthood, with another, smaller peak of incidence around age 50. In the United States, Crohn’s has been diagnosed in 700,000 people, striking women and men equally. It is thought to be caused by several factors, including environmental and genetic triggers. However, according to Jess Kaplan, MD, a pediatric gastroenterologist at Massachusetts General Hospital in Boston, “We don’t yet know exactly why this disease happens.” Experts do know that Crohn’s causes the digestive system to develop an improper response to bacteria that typically reside in the gut, reacting with a heightened state of inflammation. Why certain individuals’ guts overreact to these bacteria is not completely understood, but it has been determined that the genes NOD2 and ATG16L1 predispose people to Crohn’s. NOD2 is involved in recognizing bacteria, thus, a mutation in this gene can lead to an improper reaction to the plentiful bacteria that are naturally present in the GI system. ATG16L1 aids in the management of bacteria levels, and when mutated, can result in an overload of microbes. When these two genes malfunction, it can start a vicious cycle. While having mutations in these genes doesn’t mean an individual will definitely end up with Crohn’s disease, it does increase their chances. “You’re a little more at risk of developing the condition,” says Shields, “and then some environmental trigger comes along–an infection, or some other kind of stressor–and you develop Crohn’s disease symptoms that never really go away.” Crohn’s disease and ulcerative colitis belong to the larger disease category known as Inflammatory Bowel Disease (IBD). However, Kaplan believes the condition is much more nuanced than those two classifications. “We subclassify IBD as Crohn’s and ulcerative colitis,” he says. “I think that’s a vast under-representation of the complexity of these conditions. The disease phenotype is so different for every individual.”
Still, there are some common symptoms, which usually start with abdominal pain and very frequent diarrhea–up to 10 times a day. The inflammation in the bowels also slows down gut motility, creating further GI problems. These symptoms often lead to weight loss. “Crohn’s disease is interesting because we’ll also see signs outside of the GI tract,” says Shields. He explains that patients can experience joint pain and rashes, which are tied to the overall inflammation that occurs with the condition. To make a diagnosis, doctors will often conduct blood work to verify the inflammation and to analyze anemia and albumin protein levels. “Crohn’s patients have very low protein,” says Shields. “They’re not absorbing nutrients since it all gets lost in diarrhea.” Assessments may also include an upper and lower endoscopy to check for ulcers in the mucus lining of the intestinal walls. Some physicians may order a biopsy.
Once a diagnosis of Crohn’s disease has been reached, most patients are initially given drugs such as corticosteroids or mesalamines to decrease inflammation. Doctors may also prescribe antibiotics to decrease the amount of bacteria in the gut. “One of the theories on how Crohn’s disease develops is that the bacteria in the intestine, which is normally in balance with our body, somehow stimulates the inflammation cascade, and our body doesn’t know how to deal with it,” says Shields. “Antibiotics are given to get the bacteria under control. We don’t want to wipe out bacteria entirely, just remove enough of it to reduce the inflammation.”
However, these drugs are only successful in easing some symptoms, not eliminating them. Crohn’s disease is chronic, without any known cures. Instead, a lifetime of symptom-quelling strategies lie ahead for those with the disease. This entails figuring out what foods trigger problems, which don’t, and what activities best keep symptoms at bay. IN ATHLETES
The good news for athletes diagnosed with Crohn’s is that is does not mean giving up their sport. In fact, exercise can help reduce symptoms. The reasons are multifaceted, one being that physical activity helps enable gut motility, which in turn keeps bacteria in check. “Also, when you do physical activity, you release a lot of anti-inflammatory cytokines into the blood, and those naturally decrease inflammation in the body,” says Shields, who studies the effects of exercise on Crohn’s patients. And for those afflicted, Crohn’s won’t necessarily slow them down. “The vast majority of patients with Crohn’s disease can exercise and train as if they didn’t have the disease,” says Kaplan. For athletic trainers working with an athlete who has Crohn’s, the first step is to educate themselves, as well as everyone around them, about the disease. That was the course of action taken by Mike Ryan, PT, ATC, PES, Head Athletic Trainer for the Jacksonville Jaguars, after he learned quarterback David Garrard was suffering from the condition. “The more I found out about Crohn’s, the more I realized I didn’t know,” says Ryan. “And one of the most important things I learned was that everyone with Crohn’s disease is affected differently. That was key in helping me work with Dave.”
Educating the athlete’s coach is also critical, since those with Crohn’s may need additional breaks and special considerations. “That was the biggest thing–educating everyone on what my athletes were going through,” says Pass.
“What’s most important is open communication, maybe at a higher level than for a typical player,” Kaplan says. “That might involve speaking with the athlete about what they have found their limitations to be as well as discussing the conditions with the physician.”
In addition, the athlete should be encouraged to communicate freely and often to those around him or her. “In the end, no one knows the limitations as well as the patient does,” says Kaplan. “They’re the ones who can best tell the athletic trainer and coach when they need a break.” One key area athletic trainers must keep an eye on from the sidelines is hydration, since it’s very easy for Crohn’s sufferers to become dehydrated. This is due to the fact that most fluids are absorbed via the intestines, which are compromised, or even partially removed, in Crohn’s patients. Constant diarrhea also exacerbates the problem. “If we’re meeting a certain level of hydration with the team, our player with Crohn’s disease would be one step higher than that,” says Pass.
Hydration is also a high priority at lower levels of competition. Dave McGovern, Head Coach for Team Challenge, an endurance training and fundraising program that’s part of the Crohn’s & Colitis Foundation of America (CCFA), works with Crohn’s sufferers who are training and competing in running and walking marathons and half-marathons, and has developed strategies to get his athletes to drink enough.
“We had one person on the team who doesn’t like to drink water when she trains or competes–she says it makes her nauseous,” McGovern says. “But the main reason she’s nauseous is because she’s dehydrated, so it just gets worse. In many of these situations we talk to people about prehydrating the day before a race.”
Athletic trainers should also thoroughly understand the hurdles that accompany frequent diarrhea. Helping the athlete develop strategies for bathroom breaks can be critical. McGovern creates looped training courses for his runners with restrooms close by. “We set them up on short loops in parks that have plenty of bathrooms,” he says. “We can’t prevent these symptoms from happening, so we want to be prepared when they do occur.” Another challenge for Crohn’s athletes can be time changes for a practice or competition. Typically, they will avoid triggers close to the period when they will be exercising. A wrinkle in the schedule can wreak havoc on their maintenance plans. For example, McGovern recalls a race in which the timing was switched at the last minute, from day to night. “It was after dark, and the athletes weren’t prepared for that,” he says. “They didn’t know how their GI systems were going to handle it, and that was difficult.” DIETARY CHALLENGES
The biggest factor in managing the disease is typically one’s diet. “A major problem for the Crohn’s athlete is taking in enough food to train hard and regenerate their body, without getting a reaction,” says Nicholas Gies, Strength and Conditioning Coach at the Athlete Factory in Calgary, Canada, who specializes in working with athletes with Inflammatory Bowel Disease, which includes Crohn’s.
Crohn’s patients often require many more calories per day due to the fact that their GI tract absorbs nutrients poorly. In addition, certain foods tend to trigger symptoms, meaning replacement foods with similar nutrient qualities must be found.
McGovern recommends athletes keep a food diary to track what foods lead to problems, and to watch for patterns of symptom flare-ups related to diet. The food list can also help determine if the athlete is getting enough of the nutrients his or her body needs.
It’s important to understand that every Crohn’s sufferer has food reactions that are unique to them and thus needs to find their own best diet. In the case of Anthony Pass’s football players, each one had completely different trigger foods. The lineman was sensitive to grease, while the punter had a serious flare-up after eating spaghetti with marinara sauce. Unfortunately, these food sensitivities can often clash with an athlete’s eating preferences and traditional recommendations for optimal nutrition. For example, Pass’s college lineman was hugely sensitive to eggs, a staple of the morning training table. “So for morning training, we had to bring a special food in for him to get him through practice,” says Pass. “That wasn’t easy–you’re trying to fuel a 320-pound lineman. We ended up giving him turkey bacon and a lot of bagels to supplement his carb and protein needs.”
For many in McGovern’s Team Challenge group, wheat, gluten, and dairy are the most problematic foods. “A lot of the sports drinks made for endurance have whey protein, which is a dairy product,” he says. “In other cases, it’s a soy-based protein, so people with soy allergies can’t stomach it.” Since many energy bars contain wheat, these can also be off-limits for certain Crohn’s patients. Team Challenge athletes have found gel packs that are wheat- and gluten-free work well as a substitute. Another problem can be the carb-loading meal before a competition. The traditional pasta dinner does not often come with a gluten free option. “For our athletes, eating wheat pasta could be the worst possible thing to do before a race,” McGovern says. “It’s tough, because it’s a tradition for many runners.”
Garrard went through a lot of highs and lows in battling Crohn’s but eventually found a dietary plan that worked, allowing him to continue competing in the NFL. “Listen to your doctors and listen to your body,” he advises. “Your body will tell you what to do. After eating something, you’ll know a few hours later if that was good or not. You have to be disciplined and stay away from things that will hurt you.”
Perhaps in part because Crohn’s disease is relatively unknown, the condition can have a significant psychological impact on athletes. The symptom of frequent diarrhea especially, may leave people embarrassed and feeling alienated. Athletic trainers and coaches can do a lot to dispel these mental blocks, which may impact a player’s performance and peace of mind. “Crohn’s is the kind of disease people don’t talk about and they end up feeling alone and self-conscious,” says McGovern. “Being in a supportive environment is really important. In fact, some of the GI issues that crop up are due to anxiety that a flare up might occur, creating a self-fulfilling prophecy.”
Support, along with increased awareness that people at all levels of sports suffer from the disease can be instrumental in helping a Crohn’s athlete. “More and more people are saying, ‘Hey I have this problem, but I can still be a very high level athlete,'” says Ryan. “It can be very helpful for a young athlete with Crohn’s to be able to say, ‘David Garrard has this and he played in the Pro Bowl, so I think I can continue to be an athlete.'”
Garrard is happy to inspire next-generation Crohn’s athletes. “High school is already tough–you don’t want to have to explain to everybody that you’re running to the restroom because of diarrhea,” he says. “I’m not ashamed to talk about it. I believe the Lord blessed me with this disease in order to become a spokesperson and help others.” And he follows through on those words. When one of Pass’s college football players was struggling, Garrard obliged Pass’s request to talk to the younger athlete. “Garrard called him up and let him know that there was someone out there like him fighting the same thing,” says Pass. “It was a really good thing for him to hear.”
Sidebar: ELITE ATHLETE
David Garrard was quarterback for the Jacksonville Jaguars in 2004 when he first developed Crohn’s disease. “I was having issues with my stomach, really bad bloating pains and diarrhea, and I didn’t know why,” says Garrard. After seeing a gastroenterologist, he was told he had Crohn’s. “I thought, ‘Okay, I don’t know what that is,'” says Garrard. “It can’t be that bad if I’ve never heard of it before.” Of course, the disease was more serious than Garrard expected, and without a cure. So Garrard dealt with it head on. “I started doing whatever I could,” he says. “I listened to the doctors. I wasn’t going to let this disease keep me down.” Garrard continued to play for the Jaguars despite dropping 25 pounds in the two weeks after his diagnosis. About two months later, the symptoms had gotten so severe that Garrard opted to have part of his intestines surgically removed. The surgery, along with the anti-inflammatory drug Remicade, dramatically improved his condition.
Mike Ryan, PT, ATC, PES, Head Athletic Trainer for the Jacksonville Jaguars, worked closely with Garrard to get him back on track, and the two educated themselves on all facets of the disease. “We really had to make the learning curve very vertical so we could handle all of the issues he faced,” says Ryan. “Dave did a great job of learning and working with the specialists he was put in touch with. He was diligent about his diet and taking supplements, which made him feel better and perform better.”
Sidebar: NEW ATHLETE
Because Crohn’s patients can sometimes ease symptoms through exercise, they are encouraged to take up sports. Whether they are totally new to exercise or a lapsed athlete, a gradual integration into activity is called for. “Sports conditioning is about testing and measuring,” says Nicholas Gies, Strength and Conditioning Coach at the Athlete Factory in Calgary, Canada, who specializes in working with athletes with Inflammatory Bowel Disease, which includes Crohn’s. “Start with something relatively straightforward and monitor the effects, through athlete feedback, waking heart rate, and so forth. When a program is progressed gradually, the effect on the central nervous system is milder, and the body can adapt and respond.” Dave McGovern, Head Coach for Team Challenge, an endurance training and fundraising program that’s part of the Crohn’s & Colitis Foundation of America (CCFA), uses the same approach with his distance walking and running team. “It’s about mixing walking and running, and often they may decide to walk,” he says. “If someone wants to run, we’ll have them run for two or three minutes, and week by week we’ll add more time.”
A positive style of coaching is instrumental in working with these athletes. “It’s about coaching confidence,” he says. “You’ve got to spin things in a positive light–we continually say, ‘We’re going to get you through to the finish line.'”
One of his runners, Howard Sosnik, suffered an intestinal blockage that required surgery to remove his colon, all prior to a half-marathon he had planned to compete in. Despite the setback, Sosnik continued his training and ended up running his fastest half-marathon ever. “If they can make it through the training, we have over a 99.5 percent success rate,” says McGovern. “It’s just a matter of getting them to the starting line. In our last race, every single team member finished.