Patient Education: Understanding and Managing Pancreatic Insufficiency
What is Pancreatic Insufficiency?
Your pancreas normally produces digestive enzymes that break down the food you eat—when it cannot make enough of these enzymes, you develop exocrine pancreatic insufficiency (EPI), which prevents your body from properly digesting and absorbing nutrients, especially fats. 1
How Your Pancreas Works
- Your pancreas produces three main types of digestive enzymes: lipase (digests fats), protease (digests proteins), and amylase (digests carbohydrates) 1
- These enzymes are released into your small intestine when you eat to help break down food into nutrients your body can absorb 1
- When your pancreas is damaged or diseased, it cannot produce enough of these enzymes, leading to maldigestion 1
Common Causes of Pancreatic Insufficiency
High-risk conditions where EPI is expected include: 1
- Chronic pancreatitis (long-term inflammation of the pancreas)
- Pancreatic cancer, especially in the head of the pancreas
- Cystic fibrosis
- Total removal of the pancreas (pancreatectomy)
- Recurrent acute pancreatitis
Moderate-risk conditions include: 1
- Pancreatic surgery or bariatric surgery
- Long-standing diabetes
- Diseases of the duodenum (first part of small intestine)
Recognizing the Symptoms
Early and Under-Recognized Symptoms
You may experience these symptoms before more obvious signs appear: 1
- Diarrhea or loose stools
- Abdominal bloating and distention
- Abdominal pain or cramping
- Increased gas and flatulence
- Unexplained weight loss despite eating normally
Late and More Obvious Symptoms
As the condition progresses, you may notice: 1
- Steatorrhea: oily, greasy stools that float, are difficult to flush, and have a foul smell
- Loose, watery stools
- Visible undigested food in your stools
- Significant weight loss and muscle wasting
Understanding the Three Types of Problems
Maldigestion: Your body cannot break down nutrients properly because of lack of pancreatic enzymes 1
Malabsorption: Even when nutrients are broken down, your intestines cannot absorb them effectively 1
Malnutrition: Over time, you develop deficiencies in vitamins (especially A, D, E, and K), minerals, and calories, leading to weight loss, weak bones, and poor overall health 1
The Consequences of Untreated Pancreatic Insufficiency
If left untreated, pancreatic insufficiency leads to serious complications that significantly reduce your quality of life and increase your risk of death. 1
Short-Term Complications
- Persistent diarrhea and steatorrhea affecting daily activities 1
- Continued weight loss and muscle wasting (sarcopenia) 1
- Vitamin deficiencies causing fatigue and weakness 1
Long-Term Complications
- Osteoporosis and bone fractures due to vitamin D and K deficiencies 1
- Increased mortality, particularly in patients with pancreatic cancer 1
- Reduced ability to tolerate cancer treatments if you have pancreatic cancer 1
- Poor wound healing and increased surgical complications 1
- Significantly reduced quality of life 1
Treatment: Pancreatic Enzyme Replacement Therapy (PERT)
The cornerstone of treatment is taking prescription pancreatic enzyme replacement therapy (PERT) with every meal and snack—this is not optional, as untreated EPI will continue to cause malnutrition and serious complications. 1
How PERT Works
- PERT contains the same digestive enzymes your pancreas should be making: lipase, protease, and amylase 1
- All FDA-approved PERT products are derived from pig pancreas and work equally well at the same doses 1
- PERT treats the meal, not the pancreas—you must take it during meals to ensure the enzymes mix properly with your food 2
FDA-Approved PERT Products
All of these products are equally effective: 1, 3
- Creon: Available in 3,000 to 36,000 units of lipase per capsule
- Zenpep: Available in 3,000 to 40,000 units of lipase per capsule
- Pancreaze: Available in 2,600 to 37,000 units of lipase per capsule
- Pertzye: Available in 4,000 to 24,000 units of lipase per capsule
- Viokace: Non-enteric-coated tablets (requires acid-reducing medication)
Starting Dose
For adults, start with 40,000 to 50,000 units of lipase with each main meal and 20,000 to 25,000 units (half the meal dose) with each snack. 1, 2, 4
For example, if you weigh 80 kg (176 lbs):
- Take 40,000 units of lipase with breakfast, lunch, and dinner
- Take 20,000 units of lipase with morning and afternoon snacks
How to Take PERT Correctly
Critical timing: Take PERT during your meal, not before or after 2, 4
- If taking multiple capsules, spread them throughout the meal rather than taking all at once 2
- Swallow capsules whole with liquid—do not chew or crush them 3
- If you cannot swallow capsules, you may open them and sprinkle the contents on soft acidic foods like applesauce or yogurt, but do not chew the granules inside 3
Adjusting Your Dose
Your doctor may need to increase your dose based on: 1, 4
- The size and fat content of your meals
- Whether your symptoms improve
- Your weight gain and nutritional status
- The maximum safe dose is 2,500 units of lipase per kg per meal or 10,000 units per kg per day 1
What If PERT Doesn't Seem to Work?
If you continue having symptoms despite taking PERT, your doctor may: 4
- Increase your PERT dose
- Add a proton pump inhibitor (PPI) or H2-blocker to reduce stomach acid
- Test for other conditions like small intestinal bacterial overgrowth (SIBO)
- Check if you're taking the enzymes at the correct time with meals
Important Warnings About PERT
Do NOT use over-the-counter digestive enzyme supplements—they are not regulated, not standardized, and will not effectively treat your condition 1, 4
Avoid very high doses without medical supervision—doses exceeding 2,500 units/kg/meal have been associated with bowel strictures, especially in children with cystic fibrosis 3
Dietary Recommendations
What to Eat
Follow a low-to-moderate fat diet with frequent smaller meals rather than three large meals per day. 1, 4
- Eat high-protein foods to maintain muscle mass 1
- Do NOT follow a very-low-fat diet—you need some fat for essential fatty acids and fat-soluble vitamins 4
- Spread your food intake across 3 meals and 2-3 snacks daily 1
- Adjust your PERT dose based on the fat content of each meal 4
What to Avoid
- Alcohol: Completely avoid alcohol as it worsens pancreatic damage 1
- Tobacco: Stop smoking as it accelerates pancreatic disease 1
- Large, high-fat meals that overwhelm your enzyme capacity 1
Vitamin and Mineral Supplementation
You will need routine supplementation of fat-soluble vitamins (A, D, E, and K) because pancreatic insufficiency prevents their absorption. 1, 4
Monitoring Requirements
Your doctor should check: 1, 4
- Fat-soluble vitamin levels annually (vitamins A, D, E, K)
- Blood sugar and hemoglobin A1C annually (pancreatic insufficiency often occurs with diabetes)
- Bone density scan (DEXA) every 2 years to screen for osteoporosis
- Weight and nutritional status regularly to ensure adequate calorie intake
Specific Vitamin Concerns
- Vitamin D deficiency is extremely common and contributes to weak bones and fractures 1
- Vitamin K deficiency also increases fracture risk 1
- African American patients are at particularly high risk for vitamin deficiencies and need closer monitoring 1
Measuring Treatment Success
Your treatment is working if you experience: 1, 4
- Reduction or elimination of oily, greasy stools (steatorrhea)
- Improvement in diarrhea, bloating, and gas
- Weight gain and improved muscle mass
- Increased energy and better quality of life
- Normal or improving vitamin levels
Common Mistakes to Avoid
Taking enzymes at the wrong time: Taking PERT before or after meals instead of during meals significantly reduces effectiveness 2, 4
Using over-the-counter products: Digestive enzyme supplements from health food stores are not FDA-approved and will not adequately treat your condition 1, 4
Not adjusting doses for meal size: A small snack needs less PERT than a large, fatty meal—work with your doctor to adjust appropriately 4
Stopping PERT when feeling better: This is a lifelong condition requiring continuous treatment—stopping enzymes will cause symptoms and malnutrition to return 1
Ignoring persistent symptoms: If you continue having symptoms despite PERT, contact your doctor rather than assuming the treatment doesn't work 4
Living with Pancreatic Insufficiency
Daily Management
- Plan your meals and snacks in advance so you always have PERT available 2
- Carry your PERT medication with you at all times 2
- Keep a symptom diary to help your doctor adjust your treatment 4
- Maintain regular follow-up appointments for monitoring 1
Long-Term Outlook
With proper PERT treatment, vitamin supplementation, and dietary management, most patients can maintain good nutritional status, control symptoms, and preserve quality of life. 1, 4
The key to success is:
- Taking PERT consistently with every meal and snack 2
- Working closely with your healthcare team to optimize dosing 4
- Getting regular monitoring of nutritional status and vitamin levels 1
- Making necessary lifestyle changes (avoiding alcohol and tobacco) 1
- Addressing any complications early before they become severe 1