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IPMNs, concerned for diffuse pancreatic parenchymal atrophy

Posted by sb4ca @sb4ca, Mar 19, 2024

Hi,

I almost feel whinny posting here. I don't have pancreatic cancer but I am looking for insight into pancreas changes. I have chronic hepatitis thought to be drug induced (2 biopsies); had GB removed 20 years ago. I had an MRCP over a year ago which showed .5 cm main pancreatic duct dilation (in addition to hepatic main duct dilation (13mm) and now mild intra-hepatic dilation) along with two very small cysts; one close to head and the other tail, both thought to be branch IPMN's. The objective of the test was to monitor those tiny cysts.

I just had the MRI again but this time it is noted for "diffuse pancreatic parenchymal atrophy", whereas prior there was none. I've read there is age-related parenchymal changes with fat replacement but that was noted to be a slow moving change. On the other hand, I've read that diffuse changes can be a key pre-cancerous finding. I am a thin female in mid-60's with history of weight loss and mild diarrhea. I also have a primary immune deficiency and am now treated with IVIG.

I guess my question is, given the cysts have not grown, would this be considered just an incidental finding? I am wondering if the changes could be related to an enzyme obstruction making it more of a GI issue? I know I have low serum bile acids and no intestinal alp isoenzyme-but whether that is related I have no clue. I have never had abnormal testing related to amylase or lipase. I have never had pancreatitis. Twice I had a tumor marker tested-once it was elevated but when repeated months later it was normal. Of course I will ask these questions to my doctor, but was hoping for some experience-based insight into this kind of thing.

Thanks for listening.

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craigjulian | @craigjulian | Apr 10 9:35pm
In reply to @msmelnik "Well the atrophy means you don't produce the enzymes. And yes, it's a higher risk of..." + (show)
@msmelnik

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.

Jump to this post

How are you doing now?
I have an 8 MM IPMN in the head-uncinate process, I was just diagnosed with EPI, and have a mildly atrophic pancreas.
I have more comstipation than diarrhea so my doctor doesn’t want to put me on Creon because it can cause constipation. I have my first MRCP next week after finding my IPMN. Ugh. I have so many ugly GI symptoms and a week ago I started having middle back pain. The hits just keep coming. I hope you’re doing ok.

REPLY
2 replies
msmelnik | @msmelnik | Apr 10 11:23pm
In reply to @craigjulian "How are you doing now? I have an 8 MM IPMN in the head-uncinate process, I..." + (show)
@craigjulian

How are you doing now?
I have an 8 MM IPMN in the head-uncinate process, I was just diagnosed with EPI, and have a mildly atrophic pancreas.
I have more comstipation than diarrhea so my doctor doesn’t want to put me on Creon because it can cause constipation. I have my first MRCP next week after finding my IPMN. Ugh. I have so many ugly GI symptoms and a week ago I started having middle back pain. The hits just keep coming. I hope you’re doing ok.

Jump to this post

I've been on Creon for a year. I can't eat without it. No more bad smelling gas or greasy stools. I also had to have my gallbladder removed. That has cleared up a lot of my symptoms. I had a chronically infected gallbladder as well as multiple bouts of pancreatitis. Your ERCP should show if your gallbladder is bad or not. It took a while to recover from all that but I'm finally able to eat and have normal bowel movements. I can always tell if I forgot to take my Creon. Almost within the hour. I hope you are on track to fixing your problems. If your gas is foul smelling and your stools are greasy then you should probably be on Creon. I have no adverse symptoms from it. The opposite is true though. I wish you luck!

REPLY
sb4ca | @sb4ca | 3 days ago
In reply to @craigjulian "How are you doing now? I have an 8 MM IPMN in the head-uncinate process, I..." + (show)
@craigjulian

How are you doing now?
I have an 8 MM IPMN in the head-uncinate process, I was just diagnosed with EPI, and have a mildly atrophic pancreas.
I have more comstipation than diarrhea so my doctor doesn’t want to put me on Creon because it can cause constipation. I have my first MRCP next week after finding my IPMN. Ugh. I have so many ugly GI symptoms and a week ago I started having middle back pain. The hits just keep coming. I hope you’re doing ok.

Jump to this post

I'm with you on the GI stuff. Thankfully mine is more in flares then long standing. I'm in a better place than when I posted this. Funny, I have one IPMN in the same place plus one on the tail and a brand new one in the body that's bigger than the other 2. Did they find your cyst when looking into your GI issues?

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