Usually, the pancreas churns out more than enough digestive enzymes to absorb nutrients from food. But conditions such as chronic pancreatitis, pancreatic cancer, or cystic fibrosis and procedures such as pancreatic surgery can cause enough damage to the pancreas that people no longer produce enough of those enzymes. “You have to lose about 90 percent of the digestive enzyme capacity of the pancreas before losing the ability to digest sufficient nutrients,” says Dr. Forsmark. When this happens, exocrine pancreatic insufficiency (EPI) can occur. Having EPI means that you won’t fully absorb the nutrients from your food. Because of that, EPI can lead to vitamin deficiency, most notably in vitamin D, but sometimes in A, E, K, and B vitamins, too, says Forsmark. Over time, EPI can result in malnourishment, as well as weight and muscle mass loss. Eating is something you do every day, several times a day, so EPI can be a challenging condition to manage at times. But with the help of a supportive care team, you can eat well, manage symptoms, and avoid the downstream problems of EPI. Here are some of the challenges that may arise and what you can do to manage them.
Feeling discomfort after meals
Because of inadequate digestion, nutrients will be lost in the stool. Weight loss is common, says Forsmark, but if you’re not absorbing food properly, you’ll also get diarrhea and steatorrhea (excess fat in the stool). Your stool will look oily or greasy, or you’ll notice an oil slick on the surface. In addition, you’ll notice bloating, gas, and abdominal discomfort after eating. Most EPI patients have a pancreas that still makes enough digestive enzymes for a small meal. “Many patients feel better eating multiple small meals rather than three large ones,” says Forsmark. If you do consume a large, fatty meal, though, you will experience symptoms such as bloating and gas. Rest assured that this itself does not cause damage, but you won’t get the maximum nutritional benefit from those foods.
Adjusting your diet
It’s tough to change your diet for any reason, including to manage a medical condition like EPI, but adopting a new way of eating can help. EPI particularly interferes with the ability to absorb fat, which is why you may have heard that very low-fat diets can help manage symptoms. The problem with severely limiting fat is that it can lead to a deficiency in fat-soluble vitamins, which then creates problems later on, including an increased risk of osteoporosis. (This is why doctors today recommend that people with EPI include moderate amounts of healthy fats in their diet.) In short, there is no “EPI diet,” says Forsmark. “We recommend a heart-healthy, moderately low-fat diet, but there’s no specific food that hurts or helps the pancreas.” Connecting with a registered dietitian (ask your gastroenterologist or primary care provider for a recommendation) can help you create a well-balanced plan.
Getting the right dose of PERT
Pancreatic enzyme replacement therapy (PERT) pills are taken by mouth before and during meals. They provide your body with the digestive enzymes needed to break down fat, protein, and carbohydrates to properly absorb your meal. PERT not only improves symptoms of EPI but can also help decrease the risk of vitamin deficiencies that can create medical problems such as osteoporosis or loss of muscle mass. If you have vitamin deficiencies, you’ll likely be put on PERT. But figuring out how much PERT you need can often involve some trial and error; it can be challenging for both patients and doctors to get the dosage correct. “There’s not a test you can do to find out if patients are on enough of these enzymes,” says Forsmark. He usually puts patients on an initial dose of 40–50,000 units of lipase (a pancreatic enzyme) per meal and half of that amount for snacks. After a few months, you’ll have your levels of fat-soluble vitamins measured and discuss your symptoms. If, for instance, you used to have quite oily stools and now they’ve normalized, then that’s a good sign the dosage is correct. If symptoms haven’t improved, it doesn’t mean PERT isn’t working for you; you’ll just need an adjustment. Some people will need to increase their dose of to 70–90,000 units of lipase per meal, he says.
Remembering to prioritize bone health
“For patients who have EPI, there is a very high risk for osteopenia and osteoporosis,” says Forsmark. You should talk to your doctor about taking vitamin D and get a bone density scan to check your bone health. Regular exercise is also an important bone strengthener.
Managing social situations
It’s not always easy to head to a friend’s house or meet family for dinner when you have EPI. “Patients may have diarrhea or nausea that occurs after a meal. As such, they’re always calculating if they can go out with friends — and if they do, they’re thinking about where they can find the nearest bathroom,” says Forsmark. Unfortunately, there’s no simple solution for navigating these tough social situations when you have a gastrointestinal (GI) disease. Some coping strategies may include suggesting restaurants that you know well (including where the bathroom is) when friends want to go out. You might also want to read the menu ahead of time to tentatively choose the meal you’ll order and then plan the right PERT dose to take. Not comfortable going to someone else’s home and having to use a common bathroom? You might feel better inviting people over to yours, where you can sneak up to a more private bathroom if needed.
Getting comfortable talking about symptoms
Yes, it can be embarrassing to talk about how your stools are oily or the putrid smell coming from the bathroom. “I ask patients questions about their stool directly, because people don’t volunteer this information,” says Forsmark. Sometimes, he says, patients will deny that their stool smells really bad, for example, but their spouse will say yes, they do. In addition, many patients say that they don’t look at their stool, but it’s important that you do, so you can report back to your doctor. An improvement in symptoms is one of the only ways to know if the condition is being properly managed. Also realize that your GI doctor has seen and heard it all, and they’re not judging you for any answer you give. Honesty truly is the best policy.
