IPMNs, concerned for diffuse pancreatic parenchymal atrophy

I just had a second MRCP to follow 2 tiny IPMN's; one in uncinate process the other in the tail that were found in '22. Would the uncinate be considered the head?
Neither of these have grown, but the report says an endoscopy should be done to rule out stricture/obstruction. I got a call today (saturday) and was scheduled for EUS ERCP/pancreas. I just had one of those in '23. Anybody have any insight here?

Hi @sb4ca, I moved the 2 discussions you started into one discussion, so that members can follow your diagnostic testing journey. I can imagine that you have lots of questions and that you are making a list to ask your doctor.

When are you scheduled for the ERCP (endoscopic retrograde cholangiopancreatography)?

Thanks Colleen, I am hoping for some feedback. I made a list of questions and have already sent it through my portal and tomorrow have a phone consult to review them. I have the EUS ERCP scheduled for July. But I have just had one last year so I'm a bit baffled by this. One of my questions is related to accuracy of EUS ERCP vs MRCP. You would think the EUS would be more accurate yet it failed to show the cysts that both MRCP showed. And now MRCP is suggesting further testing with concern of mass or stricture. I feel like I'm going in circles. Thanks for your help.

Biopsies and biopsy reports are very important. I suggest you send your tissues to Johns Hopkins. They know what they’re looking at. The earliest report you can get is the best.

An MRI or MRCP is the method of choice in accurately assessing whether an IPMN is communicating with the main duct or strictly in the side duct. Indeterminate cysts and analysis if cyst fluid can be better using EUS.

Thank you for your comment. The concern is actually not the IPMN's as far as I know-they are >5mm. The concern is for a mass or stricture likely in the area where the head/duct meets the small intestine from what they have told me (I spoke with them after I posted this). The reason they are thinking this is because of increased duct dilatation in the pancreas, liver CBD, and intrahepatic ducts. So they think it is a pressure issue downstream from the liver. My confusion is why last year's EUS/ERCP didn't show any obstruction or this new ERCP. Is it possible that without any suspicion of a stricture, that area was not looked at? Or maybe that area is hard to image and something like a stone could hide there.

Hi. I was just recently diagnosed with severe pancreatic atrophy. I had the endoscopy with ultrasound and lots of biopsies. Two weeks later, about 10 days ago, I had the ERCP which found several gallstones and sludge. A stent was placed in the bile duct from the gallbladder. I just started Creon and I have questions because the doctors are good but the don't seem to want to tell me everything. Then I read stuff on the Internet and it's overwhelming. They seem to be worried about me getting pancreatitis. I'm taking the Creon but I still have a lot of problems clearing my colon. I'm not constipated but it just takes so long, 10 days, to have a bowel movement. Anyone else have slow digestion? I thought it was because of the Creon but if I don't take it I'm so miserable with such foul smelling gas I can't even stand it. I guess I'm not sure I'm on the right dose. I hate taking so much ducolax. I haven't felt very good but it's probably the "new normal" I suppose? I'm glad I found a group to ask questions about this stuff. Any suggestions about the slow bowels is appreciated. This is all new to me. Do you take the Creon with every meal? Even if it's just yogurt? I'm hoping to get into see a nutritionist. Not really sure what to eat but fat free and I guess chocolate is off the list. I have had trouble with too much fiber it seems. I'm trying a low fiber diet which may help with the slow digestion? I'm trying to walk and do yoga stretches that stimulate my abdomen. Any suggestions? Thanks.

Try this works for me has for several years. Get the blue pill at Walmart. Just the regular laxative. Yes, plain old Ex-Lax over-the-counter take two pills about 8 o’clock in the evening before you fall asleep. Should be good for the next a.m. BM movement if two doesn’t work try three don’t go over three cause you’ll not stop when you get regular go down to one per day… it works great.

I drink Yogi tea Stomach ease which contains fennel, helps some with stomach cramps and gas. I believe the hepatobiliary dietician at MSKCC saved my life. A standard dietician might not be a lot of help but reasonable to start there and see what happens. I was down to 103 lb from my before pancreatic cancer weight of 145 lb. One of the things which has been helpful is nut butter (I like almond butter or Nutella. It is high in fats that are digestible for me.

Well the atrophy means you don't produce the enzymes. And yes, it's a higher risk of pancreatic cancer. It's good they are monitoring your cysts. I just had a number of biopsies and all ok thank goodness. I was put on replaced enzymes. But if your not having the classic symptoms like foul smelling gas and shiny, greasy stools then maybe it's not that bad yet? Mine is severely atrophic and I had the strange new symptoms for about 5 months before it was found on CT. So your gut will tell you if you're having problems digesting. And you will know when you eat something like desert or chocolate which I loved. It's a pretty big change in the bowels you can't ignore. It's very foul to say the least. I'm on an enzyme called Creon now and it's derived from pigs of all things. But I couldn't even stand to smell it myself and was happy I live alone so let your gut do the talking, lol. Good luck.