About Chronic Pancreatitis
Are you or someone you love affected by chronic pancreatitis or recurrent acute pancreatitis? Then this guide is for you. Here, you can find helpful information about what it means to live with and manage pancreatitis, and learn about our efforts to find a cure.
01. What is Chronic Pancreatitis?
Chronic pancreatitis (CP) is a serious condition where the pancreas is inflamed (swollen). This inflammation causes scarring of the pancreas. As a result, the pancreas no longer works properly, causing problems with digestion and leading to complications such as diabetes and bone disease.
Chronic pancreatitis is a rare disease that affects about 200,000 Americans and an estimated one million people worldwide. Chronic pancreatitis affects both adults and children (pediatric pancreatitis) and can affect people of all races and ethnicities.
Currently, there is no effective treatment for people suffering from chronic pancreatitis, but there is hope. Top pancreatic experts believe a well-funded, coordinated research and development program could lead to effective treatments. Mission: Cure is working to make that happen.
Chronic Pancreatitis vs. Recurrent Acute Pancreatitis
Recurrent acute pancreatitis (RAP) is characterized by two or more episodes of acute inflammation of the pancreas, in which the patient completely recovers between episodes. Unlike in chronic pancreatitis, there may be no permanent damage or scarring to the pancreas. People with recurrent acute pancreatitis may have further problems similar to people with chronic pancreatitis, and they are more at risk of developing chronic pancreatitis.
02. Know the Signs: Causes & Symptoms
Causes of Chronic Pancreatitis
There is usually not just one factor causing chronic pancreatitis. Rather, research suggests that chronic pancreatitis is caused by a combination of lifestyle, environmental, and genetic factors.
Causes of chronic pancreatitis include:
- Genetics
- Autoimmune disorders
- Hypercalcemia (high levels of calcium in the blood)
- Chronic renal failure (decrease in the kidneys’ ability to filter waste and fluid from blood)
- Physical injury to the pancreas
- Obstructions (gallstones, other blockages)
- Certain medications
- Diabetes/Glucose Intolerance
- Acute/Recurrent Acute Pancreatitis
- Cystic Fibrosis
- Smoking
- Heavy alcohol consumption may contribute
- Idiopathic (unknown cause)
Symptoms of Chronic Pancreatitis
People with chronic pancreatitis may experience the following symptoms:
- Severe upper abdominal pain
- Back pain
- Nausea
- Vomiting
- Weight loss
- Diarrhea, oily stools (steatorrhea)
- Digestive issues, such as malabsorption, especially fats
- Nutrition and vitamin deficiencies
- Belly pain that increases when you eat or drink alcohol
- Fatigue
03. Diagnosing Chronic Pancreatitis
To diagnose chronic pancreatitis, doctors need to consider a patient’s medical history and symptoms, and rule out other possible conditions (this process is called differential diagnosis).
Tests used to diagnose chronic pancreatitis include:
- Endoscopic Ultrasound (EUS)
- Magnetic resonance imaging (MRI)
- Computerized tomography (CT) Scan
- Lipase Test
- Amylase Test
- Stool (Pancreatic Elastase) Test
- C-Reactive Protein (CRP) Test
- Triglycerides Test
- Bilirubin Test
- Fat-Soluble Vitamin Test (A, D, E, K)
Healthcare providers should also consider family history and specific autoimmune conditions to accurately diagnose chronic pancreatitis.
Listen to Dr. Eli Penn, gastroenterologist and professor of medicine, explain:
- What tests are best for accurately diagnosing chronic pancreatitis
- What inflammatory markers are relevant in chronic pancreatitis
- What doctors should ask about when diagnosing chronic pancreatitis
04. Genetics and Pancreatitis
Genetic variants, meaning changes in the DNA (sometimes called mutations), can cause or contribute to pancreatitis. If several people in the same family have pancreatitis, it can be considered hereditary or familial pancreatitis:
- Hereditary Pancreatitis (HP). Hereditary pancreatitis is a type of pancreatitis that is passed down through a family (inherited). The gene most commonly associated with hereditary pancreatitis is PRSS1.
- Familial Pancreatitis. Sometimes, when 2 or more close family members have pancreatitis and the genetic cause can’t be identified, they are said to have “familial pancreatitis.” This suggests there is a genetic component, and more comprehensive genetic testing may be needed.
The genes that cause or contribute to pancreatitis include:
- PRSS1
- SPINK1
- CTRC
- CFTR
- CPA1
- CEL
- CTSB
- PRSS1-2
- CASR
- CLDN2
- GGT1
- MTHFR
- PRSS3
- CTRB1-CTRB2
Mission: Cure encourages pancreatitis patients to consider genetic testing to help identify the underlying causes of their disease and find the best treatment possible. Any patient or doctor wanting more information about the cause of pancreatitis can seek genetic testing.
“I wish that patients would all get genetically tested. If they knew the cause, it would provide some peace of mind and a course of action. When you are having flares, you know why. At least that is how I feel. And if patients have a mutation, I wish they would find out who else in their family does too.” – Christine Cataldo, a patient with PRSS1 HP, from our blog hub
05. Pediatric Pancreatitis
While pancreatitis most commonly affects adults, children can suffer from the disease too. Each year, 12 in 100,000 children suffer from pancreatitis, and 2 in 100,000 are diagnosed with chronic pancreatitis.
Pancreatitis in children is usually caused by genetic problems or issues with the bile ducts. Finding the exact cause is something you and your doctor will need to work on together. You might have to push for a special genetic test for pancreatitis.
Listen to Ashlynn as she shares her experience of living with pediatric pancreatitis.
06. The Role of Alcohol
After a pancreatitis attack, doctors usually ask patients about how much alcohol they drink. But what if you don’t drink alcohol or only drink a little bit? Unfortunately, many patients tell us that the doctors and nurses don’t believe them. Thankfully, new research is providing a better understanding of the link between chronic pancreatitis and alcohol. It is now known that drinking alcohol does not directly cause chronic pancreatitis, and other factors (like genetics) may play a bigger role.
Listen to Rashaunda as she shares her experience of her mother being repeatedly asked, ‘Are you a drinker?
Does alcohol cause chronic pancreatitis?
Alcohol can increase the risk of chronic pancreatitis; however, alcohol alone does not directly cause the disease and it is not the greatest risk factor. Only very heavy drinking, or binge drinking, can lead to chronic pancreatitis. This means five drinks per day over a long period of time. Even among people who drink that amount, less than 5% will develop “alcohol-induced” chronic pancreatitis.
Can I drink alcohol with chronic pancreatitis?
People with chronic pancreatitis should not drink any alcohol whatsoever. This includes avoiding foods prepared with alcohol and some ‘alcohol-free’ drinks. This is because alcohol can make pancreatitis worse, causing more inflammation and damage to your pancreas and possibly increasing your risk of developing complications. Additionally, carrying on drinking will result in extreme abdominal pain.
07. Managing Chronic Pancreatitis
Nutrition
Nutrition plays an important role in the management of chronic pancreatitis (CP). An effective diet can help patients minimize flares and pain, prevent malnutrition and other complications, and maintain stable blood sugar levels. Experts recommend people with chronic pancreatitis eat low-fat, high-protein foods. Depending on personal nutrition needs, daily fat intake is typically limited to anywhere between 30 and 50 grams per day for CP patients (in the U.S.). Instead of eating 3 large meals, it’s recommended to eat 4 to 6 small meals and snacks spread throughout the day.
Pain Management
Pain management is important for pancreatitis patients, and over 80% of patients suffer from pain. Pancreatitis pain should be assessed in a comprehensive manner and treated using different approaches. These approaches involve education, pharmacological therapies, and physical therapy. Complementary and alternative therapies and mental health treatment can help.
Pancreatic Enzyme Replacement Therapy (PERT)
Pancreatic enzyme replacement therapy (PERT) is a treatment for those diagnosed with exocrine pancreatic insufficiency (EPI). People with chronic pancreatitis are at high risk of EPI, with over half of patients developing it within 10 to 12 years of diagnosis. In EPI, the pancreas doesn’t produce enough pancreatic enzymes to properly break down and absorb nutrients. Pancreatic enzyme replacement therapy involves taking medication to replace the enzymes your pancreas would normally make so you can better digest food.
“I worked with my primary care provider (PCP) over several months to calibrate a [pancreatic enzyme] dosage that works for me, which has helped me to maintain body weight, energy, and joy. I kept a food diary, established a goal weight, and identified foods to avoid, foods to minimize, and foods to increase, which all helped me feel better.” – Elizabeth Jacobs, a pancreatitis patient with EPI, from our blog hub
TPIAT
The Total Pancreatectomy with Islet Autotransplantation (TPIAT) is a surgery for patients with chronic pancreatitis or recurrent acute pancreatitis who suffer from severe pain and reduced quality of life. The procedure includes removing the entire pancreas and transplanting islet cells into the liver. This surgery should be done by a surgeon who is experienced in TPIAT. Not all pancreatitis patients are candidates for this type of surgery.
8. Complications of Chronic Pancreatitis
Exocrine Pancreatic Insufficiency (EPI)
Exocrine pancreatic insufficiency (EPI) is when the pancreas does not make enough digestive enzymes for the body to properly digest food. It can cause issues like not absorbing enough nutrients (malabsorption) from the foods you eat and weight loss. Most chronic pancreatitis patients get EPI within 10 to 12 years of diagnosis. Although there is no cure for EPI, symptoms can be managed with pancreatic enzymes and changes in your diet.
Type 3c Diabetes (Pancreatogenic Diabetes)
Type 3c diabetes is a type of diabetes caused by damage to the pancreas. In type 3c diabetes, the damaged pancreas can’t make enough insulin anymore, which makes it hard for your body to regulate blood sugar levels. While people with chronic pancreatitis do not always develop type 3c diabetes, CP patients have a higher risk of diabetes than people without CP. As a result, chronic pancreatitis patients should be monitored for type 3c diabetes.
Nutritional Deficiencies
Nutritional deficiencies are when the body doesn’t have enough of the essential nutrients it needs to work properly and stay healthy. Chronic pancreatitis can cause nutritional deficiencies mostly because the pancreas no longer works properly during digestion; frequent steatorrhea (oily stools) and poor diets are also causes. To treat a nutritional deficiency, your doctor may recommend either dietary changes, micronutrient supplements, or both.
Bone Disease
Bone disease refers to a decrease in the amount of minerals in your bones (bone mineral density) and bone tissue. This leads to weakened bones that are more prone to fractures, even in scenarios where bones typically wouldn’t break. It has been reported that between 25% and 40% of chronic pancreatitis patients suffer from bone loss. Focusing on building a strong skeleton now can make a big difference as you age.
Pancreatic Cancer
Pancreatic cancer occurs when cancerous tumors form in the pancreas. People with chronic pancreatitis have an increased risk of developing pancreatic cancer compared to the general population. However, the risk of developing pancreatic cancer is not evenly distributed among chronic pancreatitis patients, and certain patients are more at risk than others. Knowing your risk and how often to get screened can help lead to early detection and treatment.
9. Patient Resources
Mission: Cure’s resource hub is here to help patients navigate life with chronic pancreatitis. Our resource hub includes:
- Webinars
- Videos
- Toolkits
- Pancreatitis Patient Stories
- Pancreatitis Support Groups
- Patient Advocacy Resources
- Pediatric Resources
- Information on PERT Savings Programs
We work with a dedicated team of doctors, researchers, and experts in pancreatitis patient care to bring these resources to life. The best way to stay up-to-date on new resources from Mission: Cure is by signing up for our email newsletter.
10. Accelerating Research
The world’s top pancreatic experts believe a well-funded, coordinated research and development program could lead to effective treatments for chronic pancreatitis. Mission: Cure is working to make that happen.
Since our founding in 2017, we have worked hard to advance effective treatments for pancreatitis, with the goal of developing a cure:
- Developed Best-Practices Care Protocol for holistic pancreatitis care, vetted by top experts
- Worked with 8 companies to develop therapies for pancreatitis after decades without progress
- Brought over 3,000 patients, caregivers, scientists, and advocates together to search for a cure
- Identified 60 potential drug repurposing candidates that have evidence of action on pancreatitis targets
- Held patient-focused drug development meeting with FDA & contributed to the Voice of the Patient Report
- Organized & led a patient panel at National Institutes of Health (NIH) meeting to expedite therapies for pancreatitis
- And More!
We envision a future where all pancreatitis patients can prevent or treat their disease so they are no longer in pain and can live longer, healthier, more productive lives.
We believe this future is possible. Will you believe with us?
