Many patients struggle with receiving an accurate pancreatitis diagnosis. Mission: Cure held a webinar on March 10th, 2021 to address the many concerns that patients have regarding their diagnosis “are pancreatitis and pancreatic cancer related?”, “can pancreatitis be cured?”, “which tests do I need to get done?”. You can watch the webinar here. Due to the high volume of questions we received during the live webinar, we were not able to answer them all. Dr. Eli Penn has answered the remaining questions on a wide range of topics, including how pancreatitis is diagnosed, treatment and prognosis of pancreatitis, exocrine pancreatic insufficiency, and general questions about pancreatitis.
Types of Pancreatitis
Q: Images indicate that I have focal pancreatitis associated with the tail. Is this common?
Should the approach to this pancreatitis be different?
A: Pancreatitis can be present in the head, body or tail of the pancreas or all of the above. It is common to have pancreatitis associated with the tail. Pancreatitis can occur anywhere in the gland and the treatment does not differ.
Q: How is pancreatitis treated if it is caused by incomplete pancreas divisum?
A: There is no difference in pancreatitis treatment whether pancreas divisum is involved or not. It is not scientifically proven that divisum causes pancreatitis. However, it is widely believed to play a role, perhaps with other contributing causes such as genetics.
Acute vs. Chronic Pancreatitis
Q: Does each flare cause further damage to the pancreatitis?
A: Every episode of acute pancreatitis leads to some degree of pancreatic damage. The pancreas has a large “reserve” and so not all patients develop chronic pancreatitis. Put another way, the cumulative damage in many patients is not enough to cause chronic pain or pancreatic insufficiency.
Q: When can acute turn to chronic, or does it have to?
I’ve had 3 flares within 8 years, each time idiopathic. Don’t seem to be related to food. I do have psoriatic arthritis and am on methotrexate, diagnosed last year.
A: In my experience, most patients with this history end up having features of chronic pancreatitis on EUS. Whether or not patients are diagnosed with chronic pancreatitis has to do with symptoms and evidence of pancreatic insufficiency or pain, not just the imaging features. Presumably the 3 flares were significant episodes but usually multiple subclinical episodes have occurred in the interim. I would suggest that you see a pancreatologist/endosonographer and eliminate any medications or risk factors for pancreatitis.
Q: What can or should I do moving forward in regards to my pancreatic health?
I’ve had six bouts of acute pancreatitis that between 1995 and 2014 and they were seemingly completely random. I really don’t feel pain in between these bouts.
A: You should be followed by a GI with an expertise and interest in pancreatitis to monitor your disease state and progression and make treatment suggestions and changes as appropriate. You need a thorough workup for causes of pancreatitis so that you can eliminate any ongoing damage if possible. This might include genetic testing. Any one bout of acute pancreatitis can carry a 5% chance of death. This risk lessens as chronic pancreatitis sets in the patients who develop it. The most pressing issue in patients with recurrent acute pancreatitis is to try to identify a cause and intervene if possible, to avoid the risk of future acute pancreatitis and the development of chronic pancreatitis.
Q: I have EPI. Does that mean I have chronic pancreatitis?
A: As answered in the webinar, it is unusual to have EPI without chronic pancreatitis although there are other diseases that cause EPI such as cystic fibrosis, IBD, or prior gastric surgery. However, if it is caused by pancreatitis, for most patients, EPI does not occur until advanced stages of the disease so it is unlikely that a patient with EPI caused by pancreatitis would not have chronic pancreatitis.
Q: Do you continue to monitor EPI with the stool test to see if PERT is effective?
A: Yes, along with symptom monitoring such as weight, stool features, and vitamin/mineral levels easily obtained through a simple blood draw.
Q: Are the AbbVie-specific Multivitamins generally recommended to your patients?
A: The AbbVie-specific multivitamins are usually paired with Creon as patients with EPI often have difficulty absorbing fat-soluble vitamins and the AbbVie formulation was designed for patients with EPI taking PERT. Yes, recommended for this group of patients.
Q: Is EPI irreversible?
A: EPI is generally irreversible and develops when 90% of the exocrine pancreas is destroyed by fibrosis and is nonfunctional. I have occasionally seen patients with very mild EPI improve after addressing the cause (such as stopping smoking) after 12 months or so. Presumably the exocrine function can improve a few points (9% to 11%) and since one only needs 10% of the gland to avoid EPI that is possible. However, over time normal wear-and-tear with age, as with all organs, may lead to recurrence in such patients, even without the previous injurious agent/problem.
Treatment and Prognosis
Q: Should you have any checkups as to the status of your chronic pancreatitis over the years?
A: Yes, you should have regular checkups that include scans to determine damage to the pancreas and/or progression of disease as well as signs of pancreatic cancer. Tests to determine EPI and diabetes should be ordered and reviewed and a regular review of patient symptoms, diet, or other changes should be noted and monitored.
Q: Will this be a lifetime condition to just live with it or can my chronic pancreatitis be cured?
I have been diagnosed with chronic pancreatitis. I do not have too much abdominal pain and I have been prescribed Creon.
A: There is not enough information to provide guidance. How was this person diagnosed with CP? Was a fecal elastase test done to determine EPI and prescribe Creon? Today, if this is an accurate diagnosis there is no effective treatment or cure that will stop or reverse CP but there are many researchers working on these, some supported by Mission: Cure.
Q: What oral pain meds or pain med combinations do you find work best?
A: My approach is unique. I try to keep patients off chronic opiates for as long as possible with celiac plexus block 1-2 times a year and low-dose naltrexone (2 mg) to enhance the body’s natural pain relieving system. When they do need opiates, I definitely buck the trend of the pain management doctors by trying to limit the meds to times of flares. Chronic daily opiates lead to tolerance and actually increase pain sensitivity in the central nervous system, and at higher doses they can cause significant impairment in quality of life. Quality of life ultimately determines when I send patients for Total Pancreatectomy with Islet Auto-Transplantation (TPIAT) evaluation.
Q: What is the average life expectancy for patients diagnosed with CP in their 20s?
A: Chronic pancreatitis does not directly alter life expectancy. Most mortality related to chronic pancreatitis is actually caused by related issues such as diabetes, malabsorption, and mental health conditions resulting from long term chronic pain and other related symptoms. Chronic pancreatitis can increase the risk of pancreatic cancer. Hereditary pancreatitis patients should have annual pancreatic cancer screenings. Comorbidities like diabetes and malnutrition can be identified early and managed.
Q: Are you available for consultation?
A: Dr. Penn has indicated that he is available for consultation through his office.
Elastase Stool Testing
Q: Is a Pancreatic Elastase-1 test result a good measure of the function (health) of the pancreas?
A: It measures the exocrine function of the pancreas. This is the part of the pancreas that produces and releases digestive enzymes used to digest and absorb food. The other part of the pancreas is the endocrine function. This is the part of the pancreas that produces and releases insulin. An A1C plus a fasting blood sugar or glucose tolerance tests are used to measure how well the pancreas is producing insulin.
Q: Is it appropriate for me to send my GI a note through the patient portal specifically requesting a Pancreatic Elastase stool test and endoscopic ultrasound?
A: Yes, it is always appropriate to request additional tests if you did not get the answers you need. However, if the GI dismissed pancreatic issues, understanding his/her reasoning is important to determine next steps. If you don’t think you or your disease is being taken seriously, consider getting a second opinion.
Testing to Diagnose Pancreatitis
Q: I was recently diagnosed with acute pancreatitis after experiencing extreme abdominal pain. I was taken to the ER, received a CT scan, and had blood work done. I was released within a few hours. Is this normal practice?
A: Whether this is “normal” depends on the results of the scans and blood work but often, if the results look normal and unless the ER staff determines that the patient needs IV fluids and medicines, this is pretty typical.
Q: Why does imaging show an inflamed pancreas, yet my inflammations markers come back negative?
Is this because of my SPINK1 mutation?
A: Many of my patients with chronic pancreatitis have intermittently had normal inflammatory markers at times of pain and I have taken this as evidence that other mechanisms for pain, such as obstruction of small tributaries of the branches of the pancreatic duct by calcification and fibrosis, play a role. There simply is no test that is universally abnormal during a flare of chronic pancreatitis pain.
Q: I have 5 minor Rosemont Criteria on EUS, but my GI does not want to label it chronic pancreatitis.
A: Gastroenterologists who perform EUS are very reluctant, in my experience, to label patients with chronic pancreatitis. Rosemont criteria are far from perfect but in my opinion are the best test for patients with moderately severe pancreatic-type pain prior to the onset of EPI (which is diagnostic). Your doctor will have to tell you why he does not think it is chronic pancreatitis. It could be the case that he does not see or recognize the damage in the pancreas through scans.
Q: Is there evidence that supports treatment of chronic pancreatitis with large doses of Vitamin C, Grapeseed Extract, and Curcumin?
A: Though there is no scientific evidence to support this, given that we have a poor understanding and even poorer diagnostic abilities for chronic pancreatitis patients with pain flares, I often tell patients that if something so inherently-benign helps to keep taking it. I don’t think the supplements could have any negative impact on testing, such as altering lab results or imaging.
Q: From your experience, what does the chronic pancreatitis patient population look like?
Is there an even distribution across adults, adolescents, and pediatric patients?
A: The pancreatitis patient population is quite diverse and heterogenous and affects adults, adolescents and children. Different underlying causes affect one subgroup more than others. For example, PRSS1-driven pancreatitis, also called hereditary pancreatitis or pediatric pancreatitis, presents in children as young as toddlers but is more common in 9-16 year olds. Chronic pancreatitis affects both men and women with slightly more men than women.
Q: Is there any evidence that shows a relationship between eating disorders like bulimia and pancreatic disease?
A: There is no direct relationship that we know of. Any statistical relationship would likely be due to secondary associations such as tobacco use.
Q: Can one develop Gastroparesis after having Chronic Pancreatitis?
A: Although gastroparesis is a different condition than chronic pancreatitis, it is not unusual for a patient to have both although with treatment, some patients can manage gastroparesis while dealing with chronic pancreatitis.
It is interesting that I have seen several patients with both chronic pancreatitis and gastroparesis, but I am not aware of any pathophysiologic relationship. One of these patients had a surgical procedure that eliminated gastroparesis but her chronic pancreatitis is still symptomatic.