Is Pancreatitis A Disease Or Disorder?
Managing EPI and Cystic Fibrosis
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Most people with cystic fibrosis (CF) — around 90 percent — will also develop exocrine pancreatic insufficiency (EPI), a condition in which the pancreas can’t properly break down food.
Most people are diagnosed with CF at birth or before the age of 2, meaning they’ll also develop EPI at an early age. For children, having either condition increases the difficulty of getting the nutrition needed to grow. And for adults, CF and EPI mean a harder time eating the right foods to stay healthy.
“It’s a double hit,” says Steven D. Freedman, MD, PhD, a professor of medicine at Harvard Medical School and the director of the Pancreas Center at Beth Israel Deaconess Medical Center in Boston. “In EPI, the pancreas doesn’t have enough enzymes to digest food, and then what you do digest may not be absorbed due to CF.”
How CF Affects the Pancreas
CF is a genetic disease that affects the exocrine glands, which produce sweat and mucus within the body. CF causes mucus secretions, which are normally thin and slippery, to become thick and sticky. This sticky mucus builds up and can cause problems in the lungs, liver, sinuses, intestines, and pancreas.
“These thick secretions plug the pancreatic duct system and lead to scarring of pancreas and loss of exocrine pancreatic function,” Dr. Freedman says. With EPI, the pancreas doesn’t secrete the enzymes needed to digest fat, protein, and carbohydrates. The most common symptom of EPI is having fatty, oily, foul-smelling stools.
Although lung function in people with the CF gene mutation can vary greatly, Freedman says there's a clear correlation between the severity of the CF gene mutation and the severity of pancreatic function in people with CF. “The more severe the mutations of the CF gene a person has, the more disease and scarring there is in the pancreas,” he says.
Once EPI is diagnosed, the necessary treatment begins: Taking pancreatic digestive enzymes with each meal to help with digestion and prevent symptoms such as fatty stools, diarrhea, and stomach pain.
A Diet for EPI and CF
Having CF means you need to eat more calories than other people because your body may absorb only a portion of what you eat because of mucus-related problems in your intestine and liver. In addition, CF can cause lung problems and inflammation in your body, which may increase your body’s metabolism. This means you may burn calories at a much faster rate.
“All together, it’s so much harder for people with CF to get the proper amounts of nutrition,” Freedman says. “Their nutritional needs are much greater.” Freedman adds that it’s not unusual for a person with CF and EPI to need up to twice as many calories a day to maintain a healthy body weight. Children with CF also have higher nutritional needs to ensure healthy growth and development.
But because calorie and nutrition needs can vary widely from person to person, it’s important to consult your doctor or a dietitian who works with people with CF in order to develop a personalized diet plan.
High-fat diets are often recommended for people with CF to help them meet their daily energy needs, but Freedman says additional digestive enzymes are also necessary with EPI so the body can tolerate that extra fat. People with CF and EPI are also more likely to have low levels of the fat-soluble vitamins A, D, E, and K and may require dietary supplements. Working with your doctor or a dietitian can help you make sure you’re getting the right number of calories, nutrients, and supplements.
Strategies for Maintaining Lung Health
“In lung health, we know good nutrition leads to better lung function,” Freedman says. “So taking the right dose of digestive enzymes for EPI and consuming enough calories will help with CF treatment.”
The other vital part of maintaining lung health in CF and EPI is staying on track with medications and exercise as directed by your doctor, Freedman says. Aerobic exercise can help loosen mucus in your chest. Chest physical therapy, also known as clapping or percussion, may also be recommended to loosen mucus.
In addition to digestive enzyme replacement, medications to treat CF may include inhaled antibiotics to prevent infection, anti-inflammatory medicines, or oral medications to thin mucus secretions. “There’s no one, clear-cut regimen to preserve lung function,” Freedman says. “The goal is to keep each individual as healthy as possible.”
Living with both EPI and CF can be challenging, but treating EPI can help you manage CF. Have regular check-ups with your doctors and don’t hesitate to call if you feel your treatments aren’t working or if you develop a respiratory infection.
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