Diagnosed with both EPI and cystic fibrosis (CF) as a toddler, Schaller has lived with both conditions for most of her life. But that hasn’t stopped her from running nine half-marathons and setting a goal to run one in every state. CF is a hereditary condition that affects the lungs and digestive system, causing thick mucus that can clog the lungs and the pancreas. Because CF affects these mucus secretions in the pancreas, most people with CF also develop EPI, a condition that blocks the production of enzymes needed to digest fat, protein, and carbohydrates in the stomach. Schaller credits exercise, along with a healthy diet and taking her medications as directed, as the key to success in staying healthy with these two chronic conditions. Managing EPI With Digestive Enzymes “I’ve taken pancreatic enzymes my whole life and usually take about 30 pills a day, five to six with each meal,” says Schaller, founder and CEO of the Rock CF Foundation in Detroit, a non-profit organization dedicated to improving life for people with CF. Schaller, who often speaks to children with EPI and CF through her work at the foundation, says that kids often struggle with taking so many pills at school. “They may not want to take pills in front of people, but I tell them if you don’t take your pills, you’re going to have repercussions, you’re going to have stomach issues, and you’ll be going to the bathroom,” Schaller says. “That’s more embarrassing.” Schaller explains that getting into a routine of taking digestive enzymes at mealtime and having them handy at all times can help. “I have a bottle of digestive enzymes at my friend’s house and my parents’ house, and I never want to go without them,” she says. “It’s just a natural thing you have to get used to when you develop EPI at a young age.” Schaller has also found that when she takes her digestive enzymes makes a difference. “I usually take them with a meal and have even played with the timing. Now I take them with my first few bites and have had no digestive issues,” she says. Steven D. Freedman, MD, PhD, a gastroenterologist, a professor of medicine at Harvard Medical School, and the director of the Pancreas Center at Beth Israel Deaconess Medical Center in Boston, agrees with this approach. “The goal is that digestive enzyme pills have to mix with food and replicate what enzymes normally do,” he says. But, he cautions, you must take the pills with food, not before. “If you take them 30 minutes before eating, which is a common mistake, they won’t do anything for you,” Freedman says. A Better Diet for EPI After years on the high-calorie, high-protein, and high-fat diet often recommended for people with CF, Schaller changed to a more whole food-based, vegetarian diet. “When I was on a high-calorie, high-fat diet a decade ago, I had the most issues with digestion and my pancreas,” Schaller says. “Why eat something that’s going to be hard to digest?” Her diet is still high in calories, as recommended for people with lung disease, but it’s centered on plant-based sources of fat and protein like avocado, almond butter, coconut oil, and lentils. When she’s training for a marathon, she adds a vegan protein shake for extra energy. Developing a diet for EPI that minimizes symptoms such as cramping and diarrhea and maximizes nutrition depends largely on the underlying condition that caused EPI, such as CF, diabetes, or pancreatic cancer, Dr. Freedman says. Consulting with your doctor or a dietitian who works with people with EPI can help you determine how to best meet your individual nutritional needs. Schaller sees her CF doctor every two months to have her lung and pancreas functions evaluated. She also sees a dietitian who monitors her digestive enzyme dosage, weight, and body mass index. A yearly checkup with her EPI doctor also helps keep her EPI under control. Freedman says most people with EPI should see a doctor at least once or twice a year. Seeing your doctor is also recommended if symptoms of EPI worsen suddenly — if, for example, you develop increased diarrhea, which could indicate that you need a different dosage of digestive enzymes or that you’re experiencing another health issue that requires treatment. By eating healthy, taking medications, and staying active, people with EPI can live life to the fullest. “I’m still researching, living, learning, and sharing what I know as I gain knowledge,” Schaller says. “When I was living with CF and EPI before, CF took over. Now I’m thriving.”
