At a loss, chronic pancreatitis or possibly worse

You can ask for an EUS but they don’t usually perform them for diagnostic purposes because it can cause a pancreatitis attack. If you really think it’s your pancreas then ask for a MRCP, it’s the gold standard of noninvasive tests. As for the gallbladder, that’s tricky. I had mine removed back in 2003. No one advised me I had to change my diet and I was running to the bathroom every time I ate something greasy. Needless to say I learned, once you have it removed, you have to stick to a low fat lifestyle. If you don’t remove it, it can start producing stones or become infected (really depends on the condition of your gallbladder). As for pancreatitis, I was born with Pancreas Divisum (rare condition where you’re born with two pancreatic ducts that never fused together). Due to the PD it caused CP. I’m only 38 and really young to have CP. Normally, a person is diagnosed with acute pancreatitis first and then over the years it can possibly develop into chronic (not always the case). I had an ultrasound, endoscopy and blood work all come back normal. It wasn’t until the CT Enterography show atrophy of my pancreas. The MRCP was ordered and the Pancreas Divisum was diagnosed. I was then referred to a pancreas specialist who performed an ERCP and the chronic pancreatitis was diagnosed. All these tests took over a year before I was diagnosed and I was born with the condition. I started to get really bad symptoms in 2014-2015 but didn’t know what it was. I lost nearly 50 pounds in a matter of months. I had pain after eating. The abdominal pain was on the left side and radiated to my back. The pain was so extreme, I was literally scared to eat. When I did eat, I had a 50/50 chance of keeping my food down. I have other medical conditions and was already on nausea and pain medication which did nothing for me at home. I was waking up in the middle of the night to vomit, my stools were clay/pale color (bile was backed up in my ducts and that’s the cause for the color change). My hair started to fall out, I developed kidney stones due to malabsorption. The list of symptoms can go on but I tend to forget because I deal with so much everyday. If it were your pancreas then you would be in debilitating pain. When my gallbladder was acting up I remember I had flu like symptoms and felt like crap. Once it was removed I felt better but they did have to do exploratory surgery the following month because I started vomiting (little did the doctors or I know it was my pancreas back then). I’ve been in/out of the hospital throughout my life and none of my blood work has ever showed pancreas symptoms. However, my liver enzymes elevate all the time. I recently found out I’m a carrier for hemochromatosis which means iron overload. It will affect your pancreas and liver and it’s more common in men. It may be something you might want to be screened for. The doctors were quick to dismiss the pancreas with me due to my age but it’s not common for people to get chronic pancreatitis, pancreas cancer unless you have a family history, cystic fibrosis or Pancreas Divisum if you’re under 50. My pancreas specialist advised me pancreatitis is common amongst the elderly because it takes years to develop. 

You’ve been reading my mail, as the saying goes. My chronic pancreatitis followed almost word for word your path, and it was a simple x-ray that finally diagnosed and confirmed the chronic pancreatitis, due to the calcification that showed up only in the x-ray. None of scans or MRI showed any signs of the disease, I had my gall bladder removed because there were “signs of sludge”, should have left that alone, and had appendix removed, supposedly had “signs of inflammation”. After almost two years of every kind of treatment and pain control, I was talked into a Whipple surgery...BIG MISTAKE. Don’t let them operate on the pancreas! Not only did it not solve anything, it made the pain worse, and made me an instant diabetic. 

There isn’t a lot to be done, and opiates are in your future if not already part of your life. Resist the temptation to continually increase pain killers, you’re going to have to find a level of pain you can deal with. I’ve been way up the scale more than once, and have to go thru withdrawals and more to get to the point where less medicine has much effect. 

Good luck to you, you’re in for a helluva ride, I’m sorry to say, though knowing what’s wrong is definelty better than worrying about cancer. Ask for an x-ray, if yours is “calcific pancreatitis” you’ll know right away. There are other causes for chronic pancreatitis, and they are not all related to alcohol abuse, despite what most doctors will tell you. If alcohol were the primary cause of chronic pancreatitis, there’d be a whole lot more of us......there’s a whole lot more alcoholics out there that don’t have pancreatitis. Go figure..

I m T1D from last 35 years, Got CP 6 months back. I start feeling swelling at upper abdomin. Pain used to start from back and side, as if their is some issue in kidneys. Never realised that it will be CP. Did MRCP.. Got 13mm stone on pancreatic head, dilated pancreas. Dr adviced me enzymes. I got some relief but I still feel pain once or twice in day after eating food. Pain is horrible as if I m unable to move my back downwards. Issue is also related to Bile duct. Done CA19-9 test which came as 2

All other reports normal. Went to another specialist, he told me to go for surgery and get that blockage remove. He may cut some parts of tube which is blocking pancreas to function. I have decided I won't go for any surgery. Will bear pain as long as life is. Once a mechanism gets punctured it never remains the same. Lost 10 kgs in last 6 months. I will flow with life as it takes me. I fought T1D for 35 years.. Now I m. 45..will fight CP.

Does movement or walking or doing anything aggravate your pain?

This is my MRCP report. Feeling lowerback pain after I eat anything. Pain upper abdomen. That's life.. I still believe this is bearable. People suffer more.. I m lucky.. Positivity in life can help to live with Chronic Pancreatitis.