I have a mistrust of the medical community. My pancreatitis was misdiagnosed several times over a period of 25 years. To be fair, it is difficult to disagnose pancreatitis or any other ailment with multiple symptoms. I also find they tend to focus on the treatment of symptoms, and far less focus on the cause(s).
In this discussion, please keep in mind that this is my opinion based on my own research of both Acute Pancreatitis and Chronic Pancreatitis. The symptoms for both are nearly identical and the most pronounced of these symptoms is a severe pain in the center of the chest just below (and off-center) from the mid point where the ribs meet. The pain radiates through to the back. The pain is dilibitating. When the pain flare-ups occur, it is difficult to find a position that provides any comfort, although I and a few others have found that sitting while bent forwards (with head towards the knees) does help. Doctors tend to focus on pain management. While I appreciate the pain relief, I focus on strategies to reduce the inflammation and work at that 100% of the time.
I have been asked before what I think about having Idiopathic Chronic Pancreatitis. Quite frankly, it does not matter what I think about it, the reality is that I have it, it is life-long, and the damage to the pancreas is irreversible. In my case, what caused the pancreatitis is unknown, that is why it is called Idiopathic (meaning no known cause). I wish I knew what caused it, and I also wish I knew what triggers the pain. If I did have a choice, I would prefer to have Acute Pancreatitis. Although more life-threatening, Acute Pancreatitis means that the pancreas is not irreversibly damaged. With judicious food eating habits, proper medication, focus on reducing inflammation, and attitude, Acute Pancreatitis attacks can be less frequent and the pain can be minimized. With Chronic Pancreatitis, there is no possibility of reversing the damage and it is progressive, in that the pancreas damage just gets worse.
Both Acute Pancreatitis and Chronic Pancreatitis refer to inflammation of the pancreas. What sufferers call a flare-up is this severe pain mentioned above: what causes the pain is a bout of inflammation of the pancreas. When there is no pain there is less inflammation. Chronic Pancreatitis is NOT a more severe form of Acute Pancreatitis.
Acute Pancreatitis (AP)
What defines AP? What I find most interesting is that there is no permanent or long-term damage to the pancreas. The pain is severe, and is often recurring. There is no doubt that AP is far more life-threatening than CP. I have read messages from suffers who have been hospitalized after visiting the ER that their hospital stays are usually many months long. When hospitalized, they typically are cut off from liquids and solids – with IV providing nutrients. This is to give their pancreas a "break" to help it heal faster. Statistically, I understand that 20% of those hospitalized pass on. AP does not necessarily lead to CP.
Chronic Pancreatitis (CP)
Typically CP is not diagnosed until well after the pancreas has experienced severe damage. In my case that was 90% destruction of the pancreas. I understand from two gastroenterologists that the 90% destruction before diagnosis is common. By this time, the pancreas is scarred and/or calcified. Is it possible that you can have a CP diagnosis without the 90% destruction? I am certain that is likely. Is it possible there is no damage to the pancreas and still have CP? No, I do not think so. There are more issues involved in a CP diagnosis, I am sure your gastroenterologist will cover these with you. Some of the other certain symptoms include malabsorption (resulting in malnutrition and weight loss), and poor digestion (particularly carbohydrates and fat) resulting in steatorrhea. Roughly 50% of those with CP also have Type 2 Diabetes.
What is a TP or Total Pancreatectomy? AIT? This refers to the total and complete removal of the pancreas. TP is usually referred to with AIT or Auto Islet Transplantation. The pancreas has specialized clusters of cells that produce insulin. These specialized cells, called islets, can be "infused" into the liver so they continue to produce insulin. When a TP is performed, with or without AIT, digestive enzymes are a necessity. If the AIT is successful, there usually is no need for insulin injections (although that remains a possibility).
Is it worth considering a TP? Yes it is. With or without an AIT, a TP has a success rate of 80% at eliminating the pains associated with AP / CP. The remaining 20%, or so, still report pains afterwards, though. I personally would not consider a TP unless the pancreas was necrotizing, but again, that is a personal choice. You need to consider a TP with your own personality and life criteria, as well as discuss this with your family and medical support team. PS. I also would not consider removal of a gall blader ... no removals at all unless it is backed up by solid evidence that is necessary (life-threatening) to remove.
What do you mean you focus on reducing inflammation? Without knowing the cause of the AP or CP, the reason for the severe pain is inflammation of the pancrea. That is the very definition of pancreatitis: inflammation of the pancreas. At this point in my research, I am not satisfied that the pain is strictly from the inflammation of the pancreas and I am not sure what causes the inflammation. There are known triggers for a pain flare-up: consuming alcohol, continued smoking, excess fatty foods, excess carbs, injury, sweets, etc. I do not know that these direct affect the pancreas or the peripheral. I do not know that the inflammation is not caused by the peripheral. The only "sure" thing is that it is inflammation that is causing the severe pain. Common sense tells me that if I can control the inflammation by either eliminating it or minimizing it, the flare-ups should be minimized or eliminated as well. So far, that strategy is working for me. I take a number of supplements to control the inflammation, most notably vitamin D3 (2000 ui, 3X daily for a total of 6000 UI) and Arnica Montana (two 30ch, minimum of 2X daily, more if I feel pain "twinges" which is a signal that a flare-up is coming). In my blood test results, I have noticed that my Vitamin D3 levels are too low. And, again, my research shows that those suffering from diabetes and pancreatitis have lowered levels of Vitamin D3 and Chromium.
Why do you think Diabetes and Pancreatitis are on the rise in North America and Europe? Actually, Diabetes and Pancreatitis are on the rise world-wide. It is a mis-conception, though, that diabetes and pancreatitis are diseases of the developed world or of Western culture. The highest incidences of diabetes are in Asia, with India the highest incidence rate. The highest incidences of pancreatitis is also in India (specifically the province of Kerala). I do not know why the incidences are increasing, although, I personally suspect genetically modified nutrients contribute to the rise. I also note that heavy alcohol use is prevalent where diabetes and pancreatitis incidence rates are highest. It also astounds me that the cost of treatment is lowest where the incidence rates are the highest.
Why do you call your pancreas 90% destroyed vs 90% dead vs 10% functional? I used to call it 90% dead. However, I had to change that because that is not the reality. If the pancreas, or any portion, were dead that would mean that the dead portion would be necrotizing and that would mean the pancreas would have to be removed. Leaving a necrotizing organ in the body would mean certain death. Whether you use 10% functional or 90% destroyed is a matter of choice. However, keep in mind that pancreatitis is one of those "invisible" diseases, that is there is nothing in your appearance that would suggest severe pain. Yes, I know extreme weight loss would be a signal ... but many friends and family would not connect weight loss to severe pain. Choose the phrase that suits you best, it is a matter of personal preference. Neither phrase is positive. If you say 10% functional, that sounds positive, but you always end up adding that your pancreas functionality will reduce - turns the phrase into a negative. If you say 90% destroyed and will only get worse, that is a negative too. (Sad to say, but there isn’t much positive about this disease).
I am at wits end trying to deal with AP (or CP). How can I cope with this? Do not give up. The severe pain may last a few days, but it does go away. I know it is severe, I have it too. Pain medications usually involves some seriously high strength pain pills including narcotics. Those can leave you in a mental fog and unable to do a whole lot. I am not sure how this affects you and I cannot make any recommendations while you are in pain. Once the pain subsides, though, it is time to kick in your research skills and looks up ways of dealing with your pain, reducing inflammation and flare-ups, find a support network that includes family, friends and your medical team, discuss the anxiety and depression due to your disease ... use the time effectively to find ways to cope when the pain does flare-up. I wish I could be more helpful with this question ... but the ways that we all individally find to cope work only for ourselves.