Exocrine Pancreatic Insufficiency
Photo by Sasun Bughdaryan on Unsplash

Living with a chronic condition can certainly raise a lot of questions, including how, exactly, the condition may impact your physical and mental health. It’s understandable to wonder: What is my body going through, and what should I potentially prepare for as I figure out my treatment options?

This is true of any diagnosis, but especially so for those that may fly under the radar, like exocrine pancreatic insufficiency (EPI). The rare, commonly misdiagnosed condition is characterized by a lack of digestive enzymes, which are produced by your pancreas, or by having digestive enzymes that don’t function as they should, according to the Cleveland Clinic. Digestive enzymes are critical proteins that break down the food you eat, so your body gets all the nutrients it needs.

EPI is usually triggered by a different underlying health condition, Mohamed Othman, MD, a professor of medicine specializing in gastroenterology at the Baylor College of Medicine in Houston, tells SELF. It’s often caused by chronic pancreatitis; cystic fibrosis; diabetes; celiac disease; inflammatory bowel disease; bariatric surgery; HIV/AIDs; gastric, pancreatic, or small bowel resection; or genetic factors.

Understanding the potential effects EPI can have on your body and mind will go a long way toward helping you figure out what is and isn’t related to your condition—and how you can feel better. Here’s what you should know about EPI’s potential impact on your well-being.

EPI can impact the body in many ways, and the effects can vary from person to person.

There’s “quite a range” of potential EPI symptoms and complications, Philip Hart, MD, a board-certified gastroenterologist at The Ohio State University Wexner Medical Center, tells SELF. But there are a few common side effects that could affect you physically and mentally. Here’s what to be aware of, and how these changes may play a role in your treatment plan.

You might develop nutrient deficiencies, which can trigger a wide range of symptoms.

When your body’s digestive enzymes can’t break down the nutrients in your food, those nutrients aren’t fully absorbed into your body. For people with EPI, fat-soluble vitamins are particularly tough for the body to take in. “Some vitamins and nutrients are dependent on the metabolized products of fat digestion in order to be absorbed,” Amy Tyberg, MD, associate director of endoscopy at the Rutgers Robert Wood Johnson Medical School in New Jersey, tells SELF. “In other words, if the fat does not get broken down in the intestine, then the vitamins and nutrients do not get absorbed.”

Some of the biggest deficiencies people with EPI can face include vitamins A, D, E, and K. Trouble absorbing some of these nutrients can lead to potential complications, including bone density loss from not getting enough vitamin D, in particular, Dr. Tyberg says.

“Calcium and magnesium levels are also affected by fat malabsorption,” she says. “Both calcium and magnesium deficiencies are a major cause of bone demineralization.” That can lead to bone health issues like osteoporosis, a condition that causes bones to become weak and brittle, and osteopenia, a loss of bone mineral density that causes your bones to get weaker.

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During your regular visits, your doctor may order blood work if you’re experiencing symptoms that seem to be outside your norm. If they detect a deficiency, they may recommend taking a supplement to fill that gap, Dr. Hart says. Your doctor can help you determine the best dosage for a supplement and recommend products accordingly.

You may notice some pretty intense weight loss.

Malabsorption of nutrients can also spell trouble because those nutrients give you energy and help your body perform all sorts of essential functions. So, naturally, if you don’t get enough of them, you might start to experience unintentional weight loss, Nuzhat Ahmad, MD, vice chief of gastroenterology at the University of Pennsylvania’s Perelman School of Medicine, tells SELF. This can be really unsettling—especially if the weight drops quickly and you start to feel weakness or heavy fatigue.

Again, this can feel kinda stressful if it happens to you, but there are solid treatment options available to help you feel better. Dr. Ahmad points to pancreatic enzyme replacement therapy (PERT). She says it’s the “cornerstone” therapy for exocrine pancreatic insufficiency. The prescription medication acts as a substitute for the missing digestive enzymes in your body, according to the Cleveland Clinic. Essentially, you would take PERT with your meals to help your body break down the food, so you can actually absorb the nutrients you need.

As a result, your weight should hopefully go back up. And if it doesn’t, your doctor may recommend that you eat a high-fat diet for a short period of time, since high-fat foods are typically higher in calories, Dr. Ahmad says.

Your bowel movements could feel a bit out of whack.

For people who have untreated EPI, diarrhea is to be expected, Dr. Othman says. You may notice loose, watery, or frequent bowel movements, and this tends to happen because the food you’re eating doesn’t get properly digested and quickly passes through the GI tract. While it’s in your gut, “bacteria ferment that undigested food” and water collects around it, he says. Cue the diarrhea.

If you don’t experience diarrhea, it’s likely that you’ll notice fatty-looking stool instead. (Think: pale, oily, and particularly pungent compared to your usual, per the Cleveland Clinic.) “Because the fat is not digested, you may see fat or oil droplets in the stool,” Dr. Othman explains. There may even be an oily residue on top of the toilet bowl after you go, he says.

PERT should help with either of these issues since it helps your body break down nutrients in your food, which should, in turn, regulate your bowel movements, Dr. Othman says.

You might experience stomach pain for various reasons.

Another potential side effect of poor digestion, per Dr. Hart: gas pain or uncomfortable bloating. People diagnosed with EPI can also develop chronic pancreatitis, a condition in which digestive enzymes become trapped inside the pancreas instead of flowing out into the upper intestine. This can cause severe stomach pain, pain in the upper abdomen that spreads into the back, or stomach pain that gets worse when you eat or drink alcohol.

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It’s really important to talk to your doctor if you’re experiencing any new or unusual pain in your abdomen. It could be a sign that your PERT needs to be adjusted or it may be a symptom of an underlying condition that’s triggering your EPI symptoms. Either way, you’ll want to get it sorted out. “We want patients to feel comfortable discussing their symptoms,” Dr. Hart says. “EPI is highly treatable and manageable. Be open and honest about your symptoms so we can appropriately manage them.”

Your mental health might take a hit, too.

Living with a chronic condition that affects so many parts of your body is, understandably, overwhelming at times. This can trigger feelings of sadness, anxiety irritability, restlessness, and guilt—all of which can signal depression, according to the National Institute of Mental Health. This is especially true for people who are trying to manage pain, or who feel stressed about treatment and what the future may look like. Not to mention, feeling all this stress can potentially exacerbate the physical symptoms you’re already dealing with—something you definitely don’t want.

“If someone’s symptoms are happening in an unpredictable way, it can trigger a cascade,” Dr. Hart says. “It could provide a fertile ground for mental health issues to develop indirectly.”

Treating your depression will likely include talking to a mental health provider, like a therapist, who specializes in chronic diseases, Dr. Othman says. Don’t hesitate to bring this up with your primary care doctor or your gastroenterologist if you’re feeling lost: They can either refer you or directly connect you with a mental health specialist in your area. Therapy can provide you with tools that can help you work through the emotional ups and downs of your condition, so you have a toolbox of coping methods to turn to when these feelings strike. Of course, making sure you’re consistent with your EPI treatment is also key here, because it can help you feel better in your own body, and give you a better quality of life.

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