Mission: Cure Blog

Pancreatic Enzymes and Pancreatitis: My Experience

By Blog, Exocrine Pancreatic Insufficiency, Uncategorized

Road towards a pancreatitis diagnosis

pancreatic enzymes for pancreatitis

#Creoninthewild Hawaii

My journey with pancreatitis started when I was about 10 years old. Throughout my years in school (elementary, middle and high school), I was misdiagnosed with a “sensitive stomach.” My pain was not taken seriously by doctors. I was sent to several counselors while I was in college because, despite my symptoms, doctors believed that the pain was in my head. I received prescriptions for chocolate as a way to ‘just calm down’ and let go of some stress. This was probably well-intentioned but clearly did not address the source of my intense pain. (Now that I have a diagnosis, I recognize that stress does, in fact, contribute to my symptoms. This makes counseling sessions a positive and essential part of my care.) Read More

Exceptional Pancreatitis Care Providers

By Blog

Exceptional Care Award

During our 2020 Moments of Hope party, we asked patients to submit the names of care providers that gave them a Moment of Hope during their disease journey. Pancreatitis is a commonly misunderstood disease, even in the medical community. New science has revealed that chronic pancreatitis is not caused by alcoholism, but rather a combination of environmental and genetic factors— yet the stigma still persists. The lack of understanding of the disease often hinders pancreatitis patients from receiving the best care.

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New Pancreatic Cancer Screening Guidelines: What Pancreatitis Patients Need to Know

By Blog

Key Takeaways

    • Pancreatic cancer is very rare. But it is also very deadly because by the time it is discovered, it often has already started to spread to other organs.
    • People with pancreatitis and a PRSS1 genetic mutation (hereditary pancreatitis) should be screened every year for pancreatic cancer starting at age 40.
      • Screening involves and MRI and a CT Scan.
    • Annual pancreatic cancer screening is not currently recommended for pancreatitis patients with SPINK1 p. N34S, CFTR, CTRC, CPA1 and CEL genetic mutations unless they have two blood relatives with pancreatic cancer.
    • Stopping smoking, a healthy diet, and exercise can help prevent pancreatic cancer.
    • If you do not know what genetic mutations you have, you can find out through specialized genetic testing
Having chronic pancreatitis increases the risk of pancreatic cancer. According to Dr. Randall Brand, Gastroenterologist and head of the early pancreatic cancer detection program at the University of Pittsburgh Medical Center, people with chronic pancreatitis have approximately a five percent chance of developing pancreatic cancer over a 20-year period. [1]

However, recent research has shown that the risk is not evenly distributed among chronic pancreatitis patients. People with PRSS1 variants (sometimes called hereditary pancreatitis) have a significantly increased risk of pancreatic cancer, although it is hard to accurately quantify the risk because different research studies have shown different risk levels. Studies suggest that people with chronic pancreatitis and some CFTR mutations and chronic pancreatitis have a slightly greater risk of pancreatic cancer than the general population. Thus far, research has not found a direct association or increased risk for pancreatic cancer for people with chronic pancreatitis-linked genetic variants such as SPINK1, CTRC and CEL but there needs to be more research on other genetic variants, chronic pancreatitis and pancreatic cancer.[2]

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Patient-Centered Care Models for Pancreatitis Patients

By Blog, News
Director of Patient Centered care

Avi Khullar, Director of Patient Centered Care

What are the experiences of individuals suffering from chronic pancreatitis and acute recurrent pancreatitis as they seek care and support?

  • How does this condition change the way that they go about their daily lives?

  • If pancreatic patients could reimagine their ideal care experience, what would that look like?

These were some of the questions that we sought to answer as we spoke with patients and caregivers of those suffering from chronic pancreatitis and recurrent acute pancreatitis.

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Seeking Treatment for Chronic Pancreatitis: Laura’s Story

By Blog, Patient Stories

Laura while traveling in Wadi Rum, Jordan

Stabbing Pain Leads to Acute Pancreatitis Diagnosis

In December 2018, Laura Perry, a 24-year old previously-healthy law student, began experiencing abdominal pain after returning home from a trip to Mexico with her family. While in Mexico, Laura had contracted an infection. Believing that it was nothing serious, her doctor prescribed antibiotics. The antibiotics were unsuccessful in reducing the pain so Laura went to an urgent care in hopes of a more effective treatment. The urgent care doctor incorrectly diagnosed H. Pylori and prescribed more antibiotics. But, Laura’s pain intensified. She describes the pain as the worst pain she had ever experienced in her life, like someone was repeatedly stabbing a knife into her stomach. With increasing pain intensity, Laura went to the emergency room and found out that her lipase levels were alarmingly high. (The pancreas produces an enzyme called lipase that is released into the digestive tract to help digest fats).

 

At this point, Laura was hospitalized and diagnosed with acute pancreatitis. Given the lack of understanding and treatment for acute pancreatitis, Laura’s total pancreatitis treatment consisted of IV fluids, pain medications, and limited food, leaving her feeling frustrated and helpless, even after she was released from the hospital.

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ICD Codes Linking Pancreatitis to Alcohol Harm Patients. Let’s Change Them.

By Blog

icd codes pancreatitisKey Takeaways

    • Currently, ICD Codes for pancreatitis associate the disease with alcohol consumption, which is scientifically inaccurate. Physicians use a system called ICD-10 codes to identify diagnoses and procedures in patient medical records and for insurance reimbursement.
    • Chronic Pancreatitis has been inaccurately thought to be caused by alcohol. This is now known to be inaccurate, but is still reflected in ICD codes. That needs correcting.
    • Inaccurate coding harms patients, causing incorrect diagnosis, delayed treatment, bias and stigma.
    • Mission: Cure has submitted a proposal to the CDC to delete the code for Alcoholic Chronic Pancreatitis and replace it with scientifically relevant codes.
    • We will need patients and family members to contact CMS and the CDC to speak up against the current coding structure and demand changes to the codes that reflect accurate diagnosis.

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Mission: Cure’s Statement on Racial Equality and Justice We at Mission: Cure stand in solidarity with the Black community, the Black Lives Matter movement, and efforts to end systemic racism. We commit to look into ourselves as individuals and as an organization and to do more to advance anti-racism in everything we do.

Mission: Cure’s Statement on Racial Equality and Justice

By Blog

We at Mission: Cure are shocked and outraged by the circumstances surrounding the deaths of George Floyd, Breonna Taylor, Tony McDade, Sandra Bland, Ahmaud Arbery and countless other victims of anti-Black violence. We stand in solidarity with the Black community, the Black Lives Matter movement, and efforts to end systemic racism. We commit to addressing racial inequality whenever and wherever we encounter it. However, as white female leaders, we acknowledge the limits of our own life experiences and therefore, will seek out and listen to those who face systemic injustice on so many levels. We commit to look into ourselves as individuals and as an organization and to do more to advance anti-racism in everything we do.

Taking on tough challenges is part of Mission: Cure’s DNA as it was founded to change how all disease is cured, starting with chronic pancreatitis.  Our mission is to ensure that all people afflicted with debilitating and untreatable diseases can count on life-saving treatments. Clearly though, this vision cannot become reality without confronting and addressing the systemic racism that routinely restricts Black, Indigenous and people of color’s access to diagnosis, treatment, cures, advocacy and support. These barriers impede participation in clinical research and Black rare disease patients are under-represented in the fight to improve patient outcomes. Mission: Cure’s quest to find a cure for chronic pancreatitis is far from over and we are committed to making sure no one is left behind. We must, and will, step up to do more as determined agents of change.

At a minimum, we commit to the following concrete steps to advance anti-racism in our organization and our work:

  • Expand our pancreatitis patient engagement efforts with a focus on expanding our reach within the Black, indigenous and people of color pancreatitis patient communities to understand and document their specific needs and priorities.
  • Ensure that studies supported by Mission: Cure will actively include and address the disproportionate burden of chronic pancreatitis in the Black and Brown communities.
  • Amplify the voices of Black, indigenous and people of color communities, including patients, clinicians, researchers and entrepreneurs in our work.
  • Develop a working group to brainstorm on lessons learned from COVID-19, including significantly worse outcomes for Black and Brown communities and the need for systemic healthcare reform to improve access to care and better care coordination.

In solidarity,

Linda Martin and Megan Golden, Co-Directors

Scary Medical Procedures Can Cause PTSD in Kids with Pancreatitis

By Blog, Pediatric Pancreatitis

Key takeaways:
•   Medical procedures can be traumatic for children, and this trauma can cause “medical PTSD”– a condition called pediatric medical traumatic stress, or PMTS
•   PMTS is being studied in people with chronic pancreatitis and other chronic illnesses
•   If children suffer from PMTS, parents can help by finding psychologists experienced in chronic illness, keeping their doctors and social workers informed, and seeking care for themselves

Addison Cuneo, MD, Clinical Fellow Pediatric Gastroenterology

Addison Cuneo, MD, Clinical Fellow Pediatric Gastroenterology, Hepatology, and Nutrition University of California, San Francisco

I see you. I see the struggle of chronic illness, I see the deeply intertwined web of psychological stress and reactions of the body, and I see the impact of the “care” provided by the medical system.

As a fellow in pediatric gastroenterology, I have spent the last few years at the bedsides of my patients, many of whom are living with the ebbs and flows of chronic pancreatitis. I have witnessed a medical system that repeatedly imposes stressful and potentially traumatic practices on kids and their families. I became interested in understanding the trauma caused by medical care and the role this trauma plays in chronic illness.

Researchers are just starting to recognize that medical care can actually be traumatic for patients, especially children. Here’s what we’ve learned so far.

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Managing Chronic Pain in Pancreatitis

By Blog, Pain Management, Patient Resources, Pediatric Pancreatitis, Topics

Key points:

•   Chronic pain from pancreatitis takes a major toll on patients and their loved ones.
•   To effectively treat chronic pancreatitis pain, we need to address the symptoms as well as the impact of pain on patients’ lives. 
•   One piece of the solution is self-management, which involves education, lifestyle changes, pain coping skills, and emotional and social support.
•   Computer and smartphone technologies can be used to teach self-management to patients who lack access to interdisciplinary pain facilities.
•   There are self-management apps specifically for pancreatitis pain and clinical trials for children and adults to determine how effective they are.

Dr. Tonya Palermo - Managing Chronic Pain in Pancreatitis

Dr. Tonya Palermo – On September 26, 2019, Mission: Cure hosted a webinar on Living with Chronic Pain for pancreatitis patients. Pediatric psychologist Tonya Palermo of the University of Washington, an expert in pain medicine, discussed her research on pain management techniques.

The agonizing burdens of chronic pain

The definition of chronic pain will feel familiar to any chronic pancreatitis patient: ongoing or recurrent pain, lasting beyond the usual course of acute illness or injury or more than 3 to 6 months, and adversely affecting the individual’s well-being. In fact, this type of pain—persistent, intense, debilitating—is a defining feature of chronic pancreatitis. Mission: Cure’s Patient Experience Survey identified this pain as the primary symptom affecting patients’ day-to-day lives. 

 Chronic pain affects more than 100 million American adults, including patients suffering from chronic pancreatitis. This number is growing. The burden of chronic pain already eclipses the burden of diabetes, heart disease, and cancer combined. 

Yet chronic pain is difficult to treat and manage. This is partially because the pain system is extremely complex. Research shows that chronic pain does not simply affect the parts of the body experiencing pain. It actually changes the brain. 

I’m a pain specialist, so I see every day what this means for my patients. Chronic pain is not just about aching bodies. It affects patients’ emotions, activities, and relationships—virtually every aspect of their daily lives. Half of patients with chronic pain suffer from anxiety or depression. Chronic pain prevents patients from spending time with their kids, enjoying the company of friends, fulfilling their responsibilities at work. Families suffer too. When children are in chronic pain, their parents are often consumed by worry, anxiety, or fear.

Today we understand that three factors influence the way we perceive pain: biological (such as our sex or whether we’ve been through puberty), psychological (such as our beliefs, moods, or styles of coping), and social (such as our cultural backgrounds or income levels). What does this mean? In responding to chronic pain, we must take a comprehensive approach that addresses all of these components.

How should doctors tackle chronic pain? 

Here’s how I believe we should address chronic pain, given what we now understand. The first step is assessment. It begins with evaluating the location of the pain, how severe it is, how long it lasts—in other words, asking detailed questions about the nature of the pain itself. 

New techniques allow us to measure how the body responds to pain, which can help us decide how to manage it. Next is assessing the impacts of pain. This is new, and essential, given all we’ve learned about the social and psychological effects of pain. Any patient with chronic pain should be screened for depression and anxiety because they occur so frequently. 

The next step should be a treatment program that draws on many disciplines. An ideal program would include 

  • education about chronic pain, 
  • medication, 
  • physical therapy, 
  • alternative therapies, 
  • academic support for children, and
  • self-management techniques.

Self-management allows patients to minimize the impact of pain on their health and daily life.

Managing your own pain 

I want to focus on that last item: self-management. Self-management refers to a comprehensive set of psychological techniques that empowers patients to tackle their own pain. Self-management programs educate patients about chronic pain and teach strategies for managing pain symptoms, such as relaxation techniques.  These programs help patients think about pain in a different way, which reduces fear and panic about the pain. Patients say they feel less likely to go to the hospital for pain when they can think more rationally about it. Self-management programs also help patients resume activities they value—for instance, helping them to re-engage in physical activities. Sometimes they target a particular issue, such as sleep. Self-management is a comprehensive approach, considering patients’ lifestyles and emotional and social support needs, reminding patients they are not alone and that there are a lot of other people struggling with the same thing.

There is a strong research base—around 100 studies—on the effects of psychological therapies on chronic pain in adults, finding moderate improvements in patients’ disability, mood, and catastrophic thinking about their pain. My colleagues and I reviewed 43 randomized control trials of adolescents with chronic pain and found small to moderate benefits in reducing pain intensity, pain frequency, disability, and anxiety, showing that these therapies are helpful for people of all ages.

A limitation of the research base is its lack of published studies on pain interventions specifically for chronic pancreatitis. But there’s good news: two current studies are addressing chronic pancreatitis pain management.

Pain management on your computer or mobile phone

There is a severe shortage of interdisciplinary pain facilities, especially for children, with only about one facility per state. Waiting lists are long. Despite the urgent need, only about 5 percent of kids with chronic pain, and very few adults, get the psychological treatment we know could help their pain. 

Fortunately, technology offers a way for people to get psychological care without going to a psychologist by bringing pain care directly to patients. For 15 years, I’ve been working on technology to teach self-management techniques, recently focusing on chronic pancreatitis. I’ve helped launch two trials of web-based methods, one each for children and adults.

Pain management on your computer or mobile phone

There is a severe shortage of interdisciplinary pain facilities, especially for children, with only about one facility per state. Waiting lists are long. Despite the urgent need, only about 5 percent of kids with chronic pain, and very few adults, get the psychological treatment we know could help their pain. 

Fortunately, technology offers a way for people to get psychological care without going to a psychologist by bringing pain care directly to patients. For 15 years, I’ve been working on technology to teach self-management techniques, recently focusing on chronic pancreatitis. I’ve helped launch two trials of web-based methods, one each for children and adults.

The second program is for adults 18 and older with chronic pancreatitis. It has been adapted for pancreatitis patients from an Australian program, the Pain Course. The Pancreatic Pain Course has five lessons that teach self-management, as well as vignettes of real patients. The Mayo Clinic and Seattle Children’s Research Institute are evaluating it; their trial is also open for enrollment. (See box.)

Current trials of self-management technologies for pain in chronic pancreatitis

WEB-MAP
855-932-6272  

Enrollment criteria: 

  • Children between 10 to 17 years old
  • Suffering from chronic pancreatitis
  • Parent and child have access to the Internet

Pancreatic Pain Course
206-884-6312

Enrollment criteria: 

  • Older than 18 years old
  • Diagnosed with chronic pancreatitis and experiencing associated pain
  • Have access to a web-enabled device

***

Mission: Cure thanks Dr. Palermo for sharing her insights on managing chronic pain. We’re heartened by the growing interest in developing better treatments for pancreatitis pain and are working hard to persuade researchers and funders to devote resources to pancreatitis patients. Dr. Palermo can be reached at palermolab@seattlechildrens.org.

To watch Dr. Palermo’s webinar

CLICK HERE

EPI and Pancreatic Enzymes: Expert Doctor Answers Patient Questions

By Blog, Exocrine Pancreatic Insufficiency, Patient Resources
Photo of Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School

Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School

Dr. Steven Freedman, MD, Ph.D., a worldwide expert on pancreatic disease and cystic fibrosis, presented on Mission: Cure’s Pancreatitis Patient Webinar on Exocrine Pancreatic Insufficiency (EPI) and Pancreatic Enzyme Replacement Therapy (PERT). EPI is one of the symptoms of pancreatitis. For a more comprehensive overview of EPI, please read this article. 

Pancreatic enzymes are a confusing but critically important part of chronic pancreatitis treatment. If you missed the webinar, you can watch it here:  We had so many questions during the webinar that we could not get to them all. Here, Dr. Freedman answers patients’ questions about EPI and pancreatic enzymes.

For a comprehensive summary of exocrine pancreatic insufficiency and pancreatic enzymes, visit our page dedicated specifically to EPI.

How do I take pancreatic enzymes for EPI? How many enzyme pills should I take?

Q. At what part of the meal or snack should I take my enzymes?

Dr. Freedman: The goal is to mimic the actions of a healthy pancreas and a healthy pancreas will release more enzymes with fat. Therefore, a person should consider how long it will take to eat a meal and what they are eating and take the appropriate enzymes. If the meal is taking longer than expected, need to take more enzymes to match enzymes with food.

Q. A question about pancreatic enzyme dosing: For an adult the dosing is 500u/kg/meal and 250u/kg/meal. Is dosing based on size of meal or amount of fat? Are these just ballpark doses?

Dr. Freedman: The FDA approval is based on body weight. However, the pancreas does not secrete based on a person’s weight but on the food that is ingested. A typical dose based on severity of EPI (may vary by patient)

  • Mild: 1-3 capsules (24,000)/meal and 1/snack
  • Moderate: 2-5 capsules/meal and 2/snack
  • Severe: 5-7 or up to 9 capsules/meal and 3-5/snack

A super-fatty meal might require 9-12 capsules. There is no magic formula and each person may be different. The amount of fat in a meal or snack affects the amount of enzyme needed.

Q. Does drinking a glass or so of water when eating a meal cause the enzymes to move through the stomach faster (wash the enzymes away before they can start working)?

Dr. Freedman: Actually, some fluid with enzymes is helpful as enzymes need some fluid to dissolve well. For example, an 8 oz glass of water with enzymes can be helpful.

  1. I make a protein drink with milk and 10,000 Creon and this makes me constipated. Why?

Dr. Freedman: If you are constipated after certain foods or drinks, it is usually due to your normal digestive state (for example, dairy causes constipation in some people). This is usually not due to the enzymes, as pancreatic enzymes do not cause constipation.

Q. Do the enzymes really expire after a few months or is that just a ploy by the pharmacy to get us to buy enzymes more often?

Dr. Freedman: Enzymes do have an expiration date since the enzymes need to be active. Usually, they are ok for a year.

Q. Can you break Creon apart to take throughout meal, or does it reduce effectiveness?

MC:  Creon capsules should not be crushed or broken apart as that will affect how they are digested and absorbed and interfere with the action on food.

Q. Do you need to take Creon with certain drinks like hot chocolate?

MC: Yes, if the hot chocolate is made with regular milk and chocolate which has fat. Enzymes are probably not needed if it is the “low fat, low sugar” kind of hot chocolate made with water.

Q. What about over-the-counter pancreatic enzymes?

Dr. Freedman: Over the counter pancreatic enzymes or digestive aids are unregulated and most are not active whatsoever. I have found none that are effective and believe these are a waste of money.

Q. Is there a vegan (non-animal based) pancreatic enzyme that you recommend?

Dr. Freedman: No. All enzymes today are from pig pancreas. There is currently research and development going on to create a non-pig formula.

EPI (exocrine pancreatic insufficiency) symptoms and causes

Q. Why did it take so long for my physician to finally diagnosis me with EPI?

Dr. Freedman: There are few people with expertise with EPI and PERT outside of cystic fibrosis as most other doctors have not had experience or training in this area. Dr. Freedman has published extensively to provide more information for clinicians and others on this subject. Many doctors don’t consider unless the patient presents with symptoms but often malabsorption has been going on for quite some time prior to obvious symptoms. Doctors should test and treat when there is any question of EPI such as low counts in the fat-soluble vitamins.

Q. What are some causes for EPI in a child without cystic fibrosis?

Dr. Freedman: There are a few other causes including chronic pancreatitis, celiac disease, a rare genetic disorder called Shwachman-Diamond Syndrome and occasionally, idiopathic EPI that, even though there is no known cause, is treated the same with enzymes.

Q. With hereditary chronic pancreatitis for 22 years, I have all of the EPI symptoms with a chronic low lipase levels of below 10 but my fecal elastase was only 180. How could that be?

Dr. Freedman: The pancreas does have plenty of reserve and is not until >90% of the pancreas is destroyed, that EPI will develop clinically.

EPI, pancreatic enzymes and diabetes

Q. What about patients with diabetes? Does Creon/PERT affect insulin for a diabetic?

Dr. Freedman: It is no accident that the endocrine and exocrine pancreas cross talk and that a person with diabetes can affect the exocrine function as insulin is needed to keep the acinar cells healthy to release enzymes and EPI can affect the release of insulin. There is a big effect on a patient if they are diabetic and have EPI and do not take enough enzymes. Without sufficient enzymes, there is malabsorption and not enough nutrients, including glucose will be taken up. This affects the amount of insulin required. If the patient then starts taking PERT or more PERT, they will be getting more glucose and their insulin requirements will be higher. A person with diabetes needs to carefully monitor their blood sugar when starting to take PERT.

Pancreatic enzymes and the gallbladder

Q. I no longer have a gallbladder. How does that affect my digestion? (My pancreas has been resected and I have already been diagnosed and treated for EPI.)

Dr. Freedman: This may result in bile salt malabsorption, which affects how well fats are broken up and digested. In some patients, persistent oily diarrhea may develop from bile salt malabsorption, and is treated with a bile binding drug (cholestyramine, Welchol, etc).

Chronic pancreatitis pain treatment

Q. You said on the webinar that Viokace is the only enzyme shown to improve pain because it is uncoated. Should I ask my doctor to switch to Viokace?

Dr. Freedman: For treating exocrine pancreatic insufficiency, there is no need to change. For the treatment of pain, especially if the pain is not responding to Zenpep or Creon or another enzyme, then you could ask your physician to switch to Viokace with an acid blocker to see if it helps.

I can’t afford pancreatic enzymes

Q. My co-pay for Creon with insurance is over $400. My income is a bit too high for assistance. Any ideas on how to get it at a lower cost?

Dr. Freedman: This is an issue for some patients as enzymes are expensive. Most of the manufacturers of pancreatic enzymes have assistance programs. You should check with them. Also, check with your physician to get help with these assistance programs and/or to try to get authorization from your insurance company.

Do I need pancreatic enzyme replacement therapy, or PERT?

Q. I have been diagnosed with chronic pancreatitis. I have/had no symptoms of EPI. 1st fecal elastase was 70.  Put on Creon for EPI and to alleviate pain.  On Creon for ~ 1 month, retest of fecal elastase was >250.  7 small meals/snacks day, one 12,000 unit Creon with each.  Want to go off Creon for 2 weeks and retest fecal elastase.  Not sure I need it at all.

Dr. Freedman: Creon will not interfere with the fecal elastase test. Given a normal value of >250, it is not unreasonable to retest.

Q. What is risk of starting PERT too soon? I have low fecal elastase but my doctor said I don’t need to start PERT because I have no symptoms.

Dr. Freedman: There is no value to starting PERT prior to a diagnosis of EPI but there are no risks of taking PERT. PERT has no side effects but they will not be absorbed and no data that supports that taking PERT will slow down the progression of the disease. In some patients with frequent recurrent acute pancreatitis attacks quick release PERT may help.

Q. I have Crohn’s of the jejunum and a partial pancreatic divisum. I am low in Vitamin A and D but I don’t know about the other vitamins. Do I need to take pancreatic enzymes?

Dr. Freedman: You should have your physician check a fecal elastase test and that would determine if you need pancreatic enzyme replacement therapy.

Q. I have chronic pancreatitis and my MRI shows atrophy. Does taking enzymes help slow down the atrophy process?

Dr. Freedman: Probably not based on studies in animal models of pancreatic disease. We would like enzymes to slow down the process of atrophy but instead we need to target the underlying chronic pancreatitis to minimize inflammation and scarring to minimize the atrophy process.

TPIAT and pancreatic enzymes

Q. If I get pancreatic surgery, do I automatically need a PERT?

MC: If you have a total pancreatectomy you will need PERT as you will no longer have a pancreas to produce enzymes and will need to take PERT.

Q. I had the TPIAT (Total Pancreatectomy with Islet Auto-Transplantation) 17 months ago. I take Creon as I had prior to my pancreatectomy. I need an NJ feeding tube. Will I need to take enzymes still?

Dr. Freedman: After a pancreatectomy you will need to take enzymes as you no longer have a pancreas to provide these enzymes. There is a product called RELiZORB that provides enzymes in a cartridge designed to work with enteral feeding.

Q. What enzyme do you suggest for a young adult who has had a TPAIT and still has pain?

Dr. Freedman: This is a complicated issue since TPIAT should have relieved your pain from chronic pancreatitis. Thus, other causes of your pain should be explored.

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