Living with Exocrine Pancreatic Insufficiency (EPI)

Imagine living each day worried about what you can eat. You feel tired, have frequent bloating, and sometimes have greasy or strange-looking stools. Maybe you have tried cutting out certain foods or taking over-the-counter remedies, but nothing helps for long.

While experiences can vary, many people with Exocrine Pancreatic Insufficiency (EPI)—a condition that makes it difficult for the body to break down and absorb nutrients from food–may live with many of the above symptoms.

This guide will explain EPI, its causes, how it is diagnosed, and how it is treated.

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What Is Exocrine Pancreatic Insufficiency (EPI)?

Exocrine pancreatic insufficiency (EPI) is a condition in which the pancreas cannot produce enough digestive enzymes to properly break down fats, proteins, and carbohydrates.

As a result, the body struggles to absorb essential nutrients which over time may lead to weight loss, vitamin deficiencies, hair loss and brittle bones, and ongoing digestive problems.

Overview: Functions of the Pancreas in Digestion

The pancreas has two main jobs: helping with digestion and regulating blood sugar. Focusing on its digestive role, the pancreas produces important substances called digestive enzymes, along with water and bicarbonate ions.

Digestive Enzymes: these enzymes—such as amylase, lipase, and proteases—break down the food you eat into smaller molecules so they can be absorbed into your body.

Amylase helps digest carbohydrates into simple sugars.

Lipase breaks down fats into fatty acids and glycerol.

Proteases split proteins into smaller peptides and amino acids.

‍Bicarbonate Ions and Water: along with enzymes, the pancreas releases bicarbonate ions and water into the small intestine.

Bicarbonate neutralizes the acidic stomach juices that enter the intestine, creating a balanced environment where the digestive enzymes can work effectively.

Water helps carry the enzymes through tiny ducts into the intestine.

‍How It Works: when you eat, your body sends signals to the pancreas to release these enzymes and bicarbonate. The enzymes start breaking down your food in the small intestine, allowing your body to absorb nutrients for energy, growth, and repair. ‍

What Causes EPI?

EPI can arise from various causes, including chronic pancreatitis (long-term inflammation of the pancreas), cystic fibrosis (a genetic disorder affecting the lungs and digestive system), pancreatic surgery, diabetes, excessive alcohol use, and certain genetic conditions.

While chronic pancreatitis and cystic fibrosis are common causes, EPI can also be linked to other conditions or arise without a clear cause.

What Are The Long-Term Health Effects of EPI?

In EPI, the pancreas struggles to make enough digestive enzymes, especially pancreatic lipase.

Over time, people with EPI can develop health problems:

Greasy or fatty stools (steatorrhea)

Stomach pain and bloating

Excessive gas

Unintended weight loss

Nutrient Deficiencies

Malnutrition from not absorbing enough nutrients

Deficiency of fat-soluble vitamins (A, D, E, K)

Missing minerals like magnesium and zinc

Bone Issues

Weak bones (osteoporosis)

Lower bone density (osteopenia)

Muscle and Immune Problems

Weak muscles and muscle cramps

Weakened immune system, leading to more infections

Cardiovascular Risks

Higher chances of heart problems due to poor nutrition

Impact on Daily Life

Difficulty working because of fatigue and other symptoms

Financial stress from medical costs

Recognizing the Symptoms of EPI

Symptoms of EPI can extend beyond just the digestive system, often due to the effects of nutrient deficiencies that can affect your overall health.

Digestive Symptoms

Digestive symptoms can include:

Steatorrhea and Bloating

One of the clearest signs of EPI is steatorrhea—fatty or greasy stools that can appear pale, float in the toilet, or leave an oily film. This happens because fats are not being fully broken down. Along with this, patients with EPI might feel gassy, bloated, or have cramps.

Diarrhea

Having frequent loose or watery floating stools because the body can’t absorb fats and other nutrients properly, which causes intestine troubles.

Stomach Pain and Cramping

Patients with EPI may feel ongoing pain or discomfort in their belly because food isn't fully digested and builds up in your intestines.

Weight Loss and Nutritional Deficiencies

Many people with EPI lose weight even when they eat enough food. This is because the body fails to absorb what it needs.

Over time, they may also become deficient in various nutrients. Deficiencies can lead to poor vision, bone weakness, skin problems, and even changes in mood or energy.

Systemic Symptoms

Many of the following symptoms are due to chronic nutrient deficiencies.

Fatigue and Weakness

When your body lacks vital nutrients, it struggles to produce energy. You may feel tired all the time, even if you get plenty of sleep. This fatigue can make it hard to focus at school or work.

Skin and Hair Changes

Another common sign is dry, flaky skin or hair loss. Because the body is not absorbing enough healthy fats and vitamins, it cannot properly nourish hair follicles or skin cells.

Muscle Cramps and Spasms

Some individuals with EPI may experience muscle cramps, possibly related to deficiencies in minerals such as magnesium and calcium.

Easily Getting Sick (Immune Deficiency)

Getting sick more often because the immune system is weaker may happen because in EPI the body isn’t absorbing the nutrients needed to fight off infections.

Why Symptoms Are Often Missed

Bloating, tiredness, and occasional diarrhea can be explained away by stress, poor diet, or lack of sleep.

Many people do not visit a doctor until these symptoms have become severe. This is why learning about EPI may lead to an earlier diagnosis and better outcomes.

Diagnosing EPI

When diagnosing EPI, doctors either assess how well you break down nutrients or measure the digestive enzymes your pancreas produces. These tests fall into two groups: direct and indirect.

Medical Tests

The following medical tests may be ordered by your doctor:

Stool Elastase Test

Stool elastase testing is commonly used as an initial screening tool. Low levels suggest EPI, but additional tests may be needed for confirmation.

Imaging Studies

Your doctor might order a CT scan, MRI, or ultrasound to examine your pancreas more closely. These tests check for damage, inflammation, or other structural changes.

Challenges in Diagnosis

EPI can be mistaken for other conditions, so talking with a knowledgeable provider who can run the appropriate assessment is important.

Overlapping Symptoms

Conditions like IBS, celiac disease, and Crohn’s disease also involve digestive issues, making it hard to pinpoint EPI right away. It can take multiple tests to rule out other problems.

Role of Specialists

A patient living with these symptoms may need to see a gastroenterologist for appropriate diagnosis. A dietitian can also help you figure out whether your symptoms are related to your diet or enzyme deficiencies.

Early diagnosis is vital because untreated EPI can lead to serious health issues. If you suspect you have EPI or have had ongoing digestive problems, talk to a healthcare professional about these tests.

Treatment Options for EPI

Treatment will be determined by the doctor managing a person’s gastrointestinal health. Common treatments include:

Pancreatic Enzyme Replacement Therapy (PERT)

FDA-approved Pancreatic Enzyme Replacement Therapy (PERT) is a standard treatment for EPI. The enzymes help break down food, allowing your body to absorb nutrients. Dosing should be guided by a healthcare provider to ensure effectiveness.

Taking your enzyme capsules at the beginning of a meal is generally recommended. The enzymes may not mix properly with the food if you wait too long. Also, remember not to chew or crush the capsules.

Dietary Modifications

The following dietary modifications may be appropriate for patients living with EPI; always consult a doctor or licensed dietician for the best options for your health.

Low-Fat Diets and Supplements

Recommendations for managing EPI have shifted from avoidance of dietary fat to eating a balanced, moderate-fat diet. Eating very high-fat meals can make EPI symptoms worse.

Because EPI can lead to fat-soluble vitamin deficiencies, some individuals may benefit from medically supervised supplementation, for example vitamins A, D, E, and K.

Treating Malnutrition

Patients who have lost a lot of weight or have vitamin shortages may need nutritional shakes or special vitamin supplements. Blood tests can show which nutrients you are lacking.

Managing Diabetes Alongside EPI

In diabetic patients, the pancreas may struggle to control both blood sugar and enzyme production.

Working closely with a doctor and registered dietician is essential to balance both conditions. A meal plan might need to focus on controlling carbohydrates and fat at the same time.

Living with EPI

Living with EPI does not have to be overwhelming; the best management plans involve working closely with your medical team to create the best plan for you.

Managing Stress and Anxiety

It can be stressful to worry about where the nearest bathroom is or whether a meal will upset your stomach. Many people with EPI feel anxious about eating out with friends or traveling.

Mental health professionals and support groups can offer helpful coping strategies for managing EPI’s impact on daily life.

Support Groups and Counseling

Resources are available for patients living with EPI.

Online support groups or local meetups can connect you with others who face the same challenges. Sharing stories, recipes, and tips can be both comforting and educational.

Tips for Dining Out and Traveling

Plan ahead by looking at restaurant menus online. Carry extra enzyme capsules in case your meal is larger or fattier than you expected.

When traveling, pack snacks you know are safe and keep your enzymes in a place you can easily reach. If you fly, keep enzymes in your carry-on luggage.

Meal Planning and Preparation

Preparing meals at home helps you control what goes into your food. Aim for a balance of protein, healthy fats, and whole grains. You might use kitchen tools like measuring cups or a food scale to keep track of how much fat you are eating.

Monitoring Symptoms Over Time

Keep a food and symptom journal. Write down what you eat, when you take your enzymes, and how you feel afterward. This helps you notice patterns, such as which foods make you feel worse.

Regular Follow-Ups with Healthcare Providers

EPI management can change over time, so staying in touch with your medical team is key. Your doctor might adjust enzyme doses, run blood tests for vitamins, or recommend new strategies for symptom relief.