Here are steps you can take to prevent EPI flares and be ready to respond if they happen while you’re out and about — plus what to carry with you when you’re on the go.
1. PERT Medication
If you’ve been diagnosed with EPI, your doctor has most likely prescribed pancreatic enzyme replacement therapy (PERT). This medication helps your pancreas function well and controls your EPI symptoms. Even if you take your PERT just before heading out the door, you should carry some with you in case you’re out longer than expected, says Elissa M. Downs, MD, MPH, a pediatric gastroenterologist at the University of Minnesota Masonic Children’s Hospital. “Truly the most important thing that people with EPI can carry with them is their prescribed pancreatic enzymes,” she explains. “Remembering to take these before every meal and snack will prevent symptoms from flaring up.” Just be aware that these enzyme supplements aren’t regulated nearly as well as prescription PERT, so their concentrations or doses aren’t as consistent, says Lieb. For people who have bile duct obstructions or strictures with their EPI, pancreas supplements with ox bile may help as a temporary aid for symptoms, Lieb says. But bile supplements can also cause watery diarrhea, he warns. According to Lieb, most people with EPI need at least 48,000 to 72,000 units of lipase per meal, and most over-the-counter (OTC) lipase supplements contain only 5,000 units per pill, he says. Fiber supplements can help with incontinence. Talk to your doctor before taking any supplements, and if you do opt for one or more, be sure to start with a low dose to minimize your chances of side effects, Lieb advises. Always take supplements with food.
3. Other Prescription Medication
If you’re taking your PERT correctly, you shouldn’t need to worry about carrying other emergency OTC medications to ward off diarrhea and other symptoms, Dr. Downs says. But if you’ve missed a PERT dose for some reason — say, you forgot to bring it with you when heading out for a meal — or you’re worried about certain symptoms rearing their ugly heads while you’re out and about, packing prescription drugs such as antispasmodics, which can be used to treat stomach cramps and pain as well as prevent gastrointestinal (GI) symptoms of EPI, can bring peace of mind, Lieb notes. If you have diabetes in addition to EPI, which is common, be sure to pack insulin and glucose supplements. You should take all your prescription drugs for EPI with a meal or snack, including nutritional drinks, to prevent upset stomach and other side effects, he advises.
4. Healthy Snacks
Keeping snacks, such as protein bars, on hand is important if you need to take your medications on the go. Avoid high-fat, sugary snacks, and check labels for hydrogenated vegetable fats, mono-/diglycerides, and olestra/olein fat substitutes, which can worsen EPI symptoms, Lieb advises. “Eating healthy is important for those with EPI and pancreatic disease due to the risk of poor nutrient and vitamin absorption,” Downs adds. “I recommend carrying healthy, portable snacks with a good mix of protein, fat, and carbohydrates.”
5. A Water Bottle
Staying hydrated is important for people with EPI, Downs says. Carry a bottle of water to hydrate on the go. Some non-caffeinated electrolyte drinks and liquid nutrition drinks can also help. This is especially important if you have diarrhea while out, as it can cause dehydration. Talk to your doctor about what drinks to pack with EPI.
6. Any Laxatives You May Be Taking
Some people with EPI who are taking their PERT as directed feel more constipated, Downs says. If you’re one of them, you should carry OTC stool softeners or laxatives with you, to be taken as needed.
7. Pain Medication
OTC pain relievers, such as acetaminophen or nonsteroidal anti-inflammatory drugs (NSAIDs), can help with pain caused by chronic pancreatitis, if your doctor says you can use them, Lieb says. He warns against overuse, though, as these drugs can cause stomach pain and diarrhea, among other side effects.
8. Antacids or Anti-Gas Treatments
Speaking of OTCs to have at the ready, Lieb says some people with EPI find that OTC antacids or gas treatments help manage stomach cramps and pain. The longer-acting the drugs are (usually listed on the label), the better, he adds. These products should allow you enough time to get home — or at least somewhere you can comfortably address your symptoms.
9. Vitamins
“Some people with EPI may need a multivitamin,” Lieb says, “but talk to your doctor first before taking one.” If your doctor recommends a once-daily multivitamin to help treat your EPI, having them with you can’t hurt. Lieb also recommends people with EPI have zinc lozenges on hand, because frequent diarrhea can increase your risk for zinc deficiency, which can then worsen diarrhea, he says.
10. Helpful Apps
The NPF recommends an app called Backpack Health (free on iOS, Android) for those with chronic conditions such as EPI, says Lieb. The app allows you to track your symptoms, medications, lab results, and more and share that information with doctors and family members. There are multiple mobile apps that can help you track your EPI symptoms and overall GI health, Downs says. “I encourage patients to explore a few and find one that they feel comfortable using,” she notes. Knowing what can trigger your symptoms — and when — can help you better prepare, especially on the go. In addition, be sure to have your doctors listed in your phone contacts in case you need to reach out with questions, Lieb says.
11. Hygiene Supplies and Clean Underwear
Consider having skin-safe cloth wipes, hand sanitizer, and a change of underwear or pants on hand in case of oily stools or leakage, Downs advises. “Sometimes emergencies happen, like we forget to take our enzymes, we don’t take enough enzymes to match the fat content of our food, or we run out of enzymes,” she explains. Preparing for these situations can help you avoid discomfort and embarrassment.
