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Pancreatic Disorders Group: Introduce yourself and connect with others
Welcome to the Pancreatic Disorders support group on Mayo Clinic Connect. This group is designed to be a welcoming, safe place where you can meet people living with pancreatic disorders or caring for someone diagnosed with one. Let’s share stories about living with a pancreatic disorder, how we've coped with issues and challenges, and exchange tips so we can feel our best and live our best lives.
Please browse the existing discussions or start a new one.
Let’s start with introductions.
What is your pancreatic disorder story? When were you diagnosed, and what symptoms have you experienced? What helps you?
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@greeneyes67f, I don't know if it may be any part of what's occurring in your case, but i do know that for me, it was entirely possible to end up having pancreatitis WITHOUT showing any inflammation on CT's or MRI's, and without having any "abnormally out of range" Amylase, Lipase, or other blood tests, too!
I know, because i managed to have unknowingly had Pancreatitis so often that i basically "digested the back 2/3rds of the inside of my own pancreas.
I had a non-functioning PNET, which was caught when it swelled up & blocked my duct in October of 2004.
That was the one time i had a high Amylase (over 1,200) and Lipase (iirc, over 6,000)--but it was the ONLY time i ever tripped a high test.
We monitored my lump for nearly a decade, and i went in expecting a Whipple in May of 2014.
But after they cut me open & took off the tail of my pancreas, they discovered it was "all duct," because i'd had so many bouts without realizing (i couldn't tell most times, if it was pancreatitis or just stress!).
So my "Whipple" became a Distal, and they just scooped out the tumor (enucleation) & performed a Distal Pancreatectomy instead.
In the years since that distal, i've found some of the research papers talking about how Chronic Pancreatitis can occur without the "typical" pancreatitis pain.
But i haven't found any doctors yet who can tell me of that's why most of my attacks didn't hurt (or if the times i've had lots of abdominal pain that feels like pancreatitis after exposure to secondhand Marijuana smoking & vaping is truly pancreatitis or not.
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1 ReactionHi! Two years ago I had an MRCP done and a 4 mm IPMN was discovered. I recently had a follow up MRCP and it was unchanged. I am still super nervous about having this in my pancreas. I struggle with GERD and IBS symptoms daily. Had my gallbladder removed 10 years ago. I hate being so nervous
Hi @michellesun - welcome to Mayo Clinic Connect. I think that feeling nervous with having an IPMN discovered in your pancreas is normal. The idea of any foreign invader in your body can be unsettling.
I'd like to introduce you to @hopeful33250, who may have some input on the IPMN finding.
How are you managing your IBS and GERD symptoms, in the meantime?