Pancreatic Disorders Group: Introduce yourself and connect with others

Posted by Lisa Lucier, Moderator @lisalucier, 9 hours ago

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?

Interested in more discussions like this? Go to the Pancreatic Disorders Support Group.

Lisa Lucier, Moderator | @lisalucier | 8 hours ago

I'm tagging @yvonnecappe @shezza51 @kristiefisher @sdave @tls @crystallynn1976 @howboy @irr4et @dianehrdr @mercellort @normfairfield @crickard70 @korazon99 @nonnie9153 @tra418 @sarah60 @ladyaceintx1 @tslayden @cherawgirl @rozy288 @geegeebabe @ericawiersfischer @gravity3 @1realjeannie @jacquie415 @moodysgoose @sb4ca @bebold @speedbird @harper7745 @roseb39 @araman @chrioli @judypville @fpc3 @tigreyes2004 @thefam2016 @jkarmazin @creondave @rashida @mjemjm @musicbart @cheyne @geri1 @watcl3355 @warrior09 @renocmh to get the new Pancreatic Disorders support group started.

You've all mentioned the pancreas or a pancreatic disorder previously that you have personally experienced or witnessed in someone you know, such as:

-Pancreatitis
-Pancreatic abscess
-Cystic fibrosis
-Pancreatic cyst or pseudocyst
-Pancreatic trauma
-Exocrine pancreatic insufficiency (EPI)
-Pancreas divisum
-Annular pancreas
-Pancreatic serous cystadenoma
-Intraductal papillary mucinous neoplasm (IPMN)
-Mucinous cystic neoplasms
-Solid pseudopapillary neoplasms
-Insulinoma
-Pancreatic intraepithelial neoplasia (PanIN)
-Pancreatic fluid collection or acute peripancreatic fluid collection(APFC)
-Walled-off pancreatic necrosis(WON)
-Hemosuccus pancreaticus

What symptoms are you or your loved one experiencing? If you or someone you know has a diagnosed pancreatic disorder, what treatments have you or they had? Do you have any input or suggestions for new members?

tslayden | @tslayden | 5 hours ago

I have EPI. I had no symptoms that I could attribute to it before the diagnosis. My bariatric NP thought it may have played a factor in my chronic diarrhea. She prescribed Creon, which I take with meals and snacks. I do not see any difference taking the Creon but I have only been on it a few months so I am willing to try it for longer.

cherawgirl | @cherawgirl | 4 hours ago

In reply to @lisalucier "I'm tagging @yvonnecappe @shezza51 @kristiefisher @sdave @tls @crystallynn1976 @howboy @irr4et @dianehrdr @mercellort @normfairfield @crickard70 @korazon99 @nonnie9153..." + (show)

@lisalucier I was originally diagnosed with Exocrine pancreatic insufficiency (EPI) but free more testing it turned out to be Bile Acid Malabsorption due to gallbladder removal.

mercellort | @mercellort | 2 hours ago

My diagnose is Pancreatric atrophy, multiple (aprox 10) cystic lesions. As a result I have low EPI. My symtoms at the moment are difficulty digesting. I have problems finding the right pancreatic enzimes.

I am very happy to be in this community

Mercedes

sb4ca | @sb4ca | 41 minutes ago

I have a dilated duct with 3 IPMN's. No symptoms. I also have a really enlarged common bile duct.

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