Chronic pancreatitis sufferer

[Pancreatitis000]

I am new to this group. I’ve suffered from pancreatitis for over 30 years. Now I have an atrophic pancreas and very damaged pancreas and was diagnosed with chronic pancreatitis via EUS’s. I also have EPI -exocrine pancreatic insufficiency as well. My enzymes like my Trypsinogen level is very low now. My enzymes like my amylase and lipase do not elevate anymore as well. I get acute on chronic pancreatitis episodes and have almost died multiple times due to acute pancreatitis complications which have affected my other organs. I’ve been on pain medicine to help manage my chronic pancreatitis for years, but my doctor became really ill and closed her practice. I don’t know what to do now. My new family doctor will not treat the pain of pancreatitis even with an EUS report showing chronic pancreatitis, and it is hard getting accepted by other doctors too when your chronic pancreatitis pain has been managed with pain medication. Most of the pain management doctors do not treat chronic pancreatitis pain with medication now. With the opiate epidemic, a lot of doctors will not prescribe the proper pain medicine for chronic pancreatitis. I didn’t ask for this painful condition pancreatitis nor it’s horrible side effects of pain, nausea etc. Have any of you who suffer from acute or chronic pancreatitis gone through the same thing as me? Who are you seeing for the proper pain management of acute pancreatitis or acute on chronic pancreatitis? What is your recommendation? I was pretty healthy a long time ago and never abused my body with alcohol, drugs or anything, but unfortunately I ended up with the pancreatitis and the pain that comes with it. 😢😢

[Jackie1947]

I really feel for you. I was diagnosed a few months ago with significant Pancreatitis. Like you alcohol was not a factor. I have Rhuemtoid Arthritis which is a possible cause of the Pancreatitis. I'm seeing a Gastroenterologist for the first time next month. I also have low EPS but can't take the supplements as I'm allergic to pork and they are pork based. My pain comes and goes and antidepressants help with relaxing the body and lowers the pain. I hope someone here can help you.

[Susaberry]

Are you in the US or UK?

[Tisch2]

where are you located?

[Joanhappy21]

I take simethicone for pain. It helps with gas. I go to GI doc who specializes in pancreas.

[Joanhappy21 in reply to Joanhappy21]

I’m sorry for your problems.

[Skye_MC Administrator]

Hi Pancreatitis000 👋 My name is Skye, and I'm the communications manager at Mission: Cure (we moderate this group). I'm so sorry for you're having a hard time with pain management at your new doctor. What area are you located in? We helped start a pancreatitis pain program at Johns Hopkins, which we've heard good feedback about from patients. Here's a video explaining the program, and what's required for in-person and out-of-state visitors: mission-cure.org/easing-chr...