Pancreatic Disorders Group: Introduce yourself and connect with others

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?

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.

@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.

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

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

Hello @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!

I 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.

@cherawgirl
Bile Acid Malabsorption is an interesting side effect of gallbladder removal. Could you provide more information about what symptoms led to that diagnosis, as well as what types of tests were used to confirm the diagnosis?

How are you feeling now? Is there medication that you take?

Hi All,

I have had and still have a very long and complex pancreas history. Where am I today?

I am still in recovery from a total pancreatotomy that was performed March 13 of this year. It was a long and complicated surgery that resulted in hospital stays from March 13-June24 of this year. I just was tested today for gastroparesis as my stomach will not empty. I would love to hear from anyone that is being treated for this and what worked successfully for them.

I am TD1 using Libra 3 glucose monitor and the ILet glucose pump. My endro is beyond pleased with the fact that I stay in range 98-100 percent of the time. I have lost much weight and hope to get my stomach issue fixed very soon.

I can share info on:
IPMNs
Pseudocyst
pancreatitis
Acute necrotizing pancreatitis
removal of pancreas, spleen, gallbladder, part of stomach and small intestine
ERCPs
related bowel issues
EPI w/Creon both before and after surgery

Great to get this group together.
Thank you,
Toni

Hi @tslayden - Welcome to the new Pancreatic Disorders support group. Having chronic diarrhea is no fun. I basically had that while taking semaglutide (Wegovy) shots, and it was how I awakened every morning.

Have you had the chance to talk with your pharmacist or your doctor about the pancrelipase (Creon) and not seeing any difference yet since taking it? If so, what did they say? Are you experiencing any side effects from it?