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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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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?
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1 ReactionI 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.
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1 Reaction@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.
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1 ReactionMy 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
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1 ReactionI have a dilated duct with 3 IPMN's. No symptoms. I also have a really enlarged common bile duct.
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1 ReactionHello @lisalucier
I've dealt with pancreatic cysts (known as IPMN) for almost 20 years now. I was extremely worried at first, but after so many years of follow-up MRIs without any significant changes in size or number of cysts, I'm finally able to relax.
I look forward to sharing and learning with this new group!
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1 ReactionI have moderate EPI. I take Creon and it helps with digestion. I also was diagnosed with Chronic Pancreatitis by way of MRI and MRCP. I have a pancreatic cyst that they are checking every 2 years, and one calcification. I am asymptomatic for the Chronic Pancreatitis.