Rohit’s Pancreatitis Story: Avoiding Pancreatitis Complications and Seeking Proactive Care

My First Pancreatitis Complications

My first (diagnosed) pancreatitis complications occurred in 1998 after I had eaten lunch. It was a shooting pain that rendered me immobile. I was in excruciating pain and later learned I had been in a coma for a few hours. Doctors told me that I had suffered an episode of acute pancreatitis after tests confirmed elevated enzyme levels. This incident was followed by frequent flare ups for the first two years. I finally got some relief after stones were removed from my pancreatic duct. I had a few minor flare ups and was diagnosed with type 2 diabetes, but I was able to get on with my life with a disciplined diet.

In 2009 I started having digestive problems, including oily stools and significant weight loss. In spite of my history with acute pancreatitis, I was not tested for chronic pancreatitis until I moved to a new city where my new primary care provider (PCP) took my symptoms seriously. After four years of deteriorating digestive health, I was finally diagnosed with chronic pancreatitis in 2013. I was prescribed pancreatic enzymes but eight years later I am still unclear about the appropriate dosage. I have regained weight, but my digestive symptoms continue to keep me on my toes.

What really treats pancreatitis?

Exhausted and confused with these digestive issues (in spite of a healthy home-cooked realize that my digestive symptoms could have been anticipated and proactively diet), I started reading medical journals and articles. After extensive research, I realized I had to manage my own disease. For example, in spite of my digestive symptoms, I was not tested for EPI until late 2020. And while I was prescribed enzymes in 2013, the dosage was not calibrated to the level at which my pancreas was functioning. Now I wonder if an earlier test for EPI could have helped calculate the right PERT dosage to better manage my symptoms.

I have an endocrinologist to help manage my diabetes and a gastroenterologist (GI) to help manage my digestive issues. They are experts in their respective domains, but the burden falls on me to manage the complexity of living with both diabetes and pancreatitis. During my research I came across the term “type-3c” diabetes. I checked with my endocrinologist recently who confirmed that my diabetes is a result of my early pancreatitis attacks and that this type of diabetes is associated with digestive issues in most patients. If my diabetes type had been accurately identified and noted, perhaps the connection to digestive issues would have been made sooner.

Severe Pancreatitis Complications

Last fall, I was referred for a bone density test. I looked at the test results and my heart sank. The test results showed such low bone density numbers that it was hard to believe I was able to walk and be as active as I was. I requested another test hoping for an error to explain these numbers, but the subsequent test results confirmed that I had developed severe osteoporosis. Now as I read the medical literature, it is known that pancreatitis patients have a high likelihood of developing osteoporosis because exocrine pancreatic insufficiency causes nutrient malabsorption. I was never referred for a bone density test in the first 20 years following my first diagnosed attack.

Now I am on a semi-annual cycle to test my vitamin levels to ensure proper fat absorption and a bi-annual cycle to test for bone density to make sure my osteoporosis is in check. I write this blog as I prepare for my next check up in hopes that others can learn from my experience and advocate for proactive pancreatitis care and disease management.

Key Takeaways

Pancreatitis is a progressive disease that should be managed proactively to avoid complications.

In addition to symptoms such as pain and digestive complications, pancreatitis can cause nutrient malabsorption which not only results in fatigue but can also result in long-term effects like osteoporosis. In addition, pancreatic patients are more likely to develop diabetes and pancreatic cancer. Talk with your care providers to request proactive screening to test, monitor, and (if possible) prevent these related conditions. This is particularly important for patients who do not have recurring debilitating pain. While you may not feel any symptoms early on, frequent tests can help track pancreatic functioning and proactively manage your overall health.

Self-advocacy is a crucial part of improving care.

Unfortunately, as is the case with other uncommon diseases, not all doctors are trained to diagnose and treat chronic pancreatitis and the complications that might arise from having pancreatitis. However, we can raise our hands to ask for help and advocate to receive better care. I encourage you to lean into the resources that Mission: Cure and other similar organizations are putting together to demand better management of symptoms today and prevent long-term complications. This includes flagging medication and/or therapies that may be affecting other aspects of your well-being (such as sleep, pain, and/or quality of life).

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Your story matters. If you’re living with pancreatitis or caring for someone who is, your experience can inspire and empower others who are going through the same thing. That’s why we want to hear from you! Share your story with us by clicking the button below.

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