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Moderator

Pancreatic Disorders Group: Introduce yourself and connect with others

Posted by Lisa Lucier, Moderator @lisalucier, Oct 14, 2025

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.

Profile picture for Zebra
Zebra | @californiazebra | Feb 1 11:36am
In reply to @greeneyes67f "I had an ultrasound 2 wks ago, it showed dilation of main duct pancreas 5.9mm. Just..." + (show)
Profile picture for greeneyes67f @greeneyes67f

I had an ultrasound 2 wks ago, it showed dilation of main duct pancreas 5.9mm. Just went yesterday for MRI it showed local prominence of main pancreatic duct 5.6mm max @ level of pancreatic head/neck. Main pancreatic duct dialation has progressed since 4 yrs ago, no masses seen no surrounding inflammation to suggest pancreatitis. I did have lab test showed CEA 1.7, CA19-9 35, Amylase 93, Lipase 45. I'm wondering if anyone can help me out with this is it serious for pancreatic cancer, or please give me insights. Thank you

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@greeneyes67f
Glad you have no masses but understand your concern.

I recently had an MRI MRCP as I’m in a high risk for pancreatic cancer monitoring program due to the BRCA2 mutation. It showed my main pancreatic duct is 2.5 cm dilated (they are very concerned). There is a fuzzy spot that looks like it might be a cluster of cysts. I’m scheduled for an EUS Friday 2/6. My CA19-9 is normal at 11. My MRCP 2 years ago was normal and an abdominal CT one year ago was normal. I’ve been in treatment for two unrelated cancers for the past 5 years, recurrent breast cancer and neuroendocrine lung cancer. Lots of cancer in my family but no pancreatic so far. We’ll see how this turns out. 🙏

I am also happy to see this non-cancer pancreatic group and hope I don’t have to move to the cancer group.

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Lisa Lucier, Moderator | @lisalucier | Feb 3 11:01am
In reply to @cherawgirl "@lisalucier I was originally diagnosed with Exocrine pancreatic insufficiency (EPI) but free more testing it turned..." + (show)
Profile picture for cherawgirl @cherawgirl

@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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@cherawgirl - hoping you get to check out some of these discussions on BAM on Mayo Clinic Connect, if you've not already;

- Bile Acid Malabsorption https://connect.mayoclinic.org/discussion/bile-acid-malabsorption/

- How bad is the 48 hour stool collection for fat and bile? https://connect.mayoclinic.org/discussion/how-bad-is-the-48-hour-stool-collection-for-fat-and-bile/

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Lisa Lucier, Moderator | @lisalucier | Feb 3 11:11am
In reply to @mercellort "@j18 About the medicines, the doctor prescribed Creon, but I could not tolerate it. So I'm..." + (show)
Profile picture for Mercedes Llort Wise @mercellort

@j18

About the medicines, the doctor prescribed Creon, but I could not tolerate it. So I'm taking SpectraZyme pancreatic enzimes from Metagenics (Amazon). There are diferent presentations with diferent amounts of enzymes per serving (this is very important to find or figure out). I take this for breakfast (I feel I have a higher EPI at breakfast and dinner because I eat less).
Lunch is my biggest meal, so I take Pancreatic enzymes by PURE. This has a higher content of Amylase, Protease and Lipase.
Also what you take depends on your diet.
Please consult your doctor before you take anything

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@mercellort - what happened when you took the pancrelipase (Creon)? You mentioned you could not tolerate it, but wondering if you could share more about how your body reacted?

How is it going now with the pancreatic enzymes you're taking?

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Profile picture for Mercedes Llort Wise
Mercedes Llort Wise | @mercellort | Feb 4 12:50pm

When I took Creon, the 1st couple of days, I felt great. I could digest everything! About the 4th day I started having pain on my left side, underneath my rib cage, the 5th day the pain was intolerable, I coud not stand up strait, even breathing was difficult, I had a bloody stool, not diarrhea, but blood all around it (I still keep a photo). I have to say that my doctor started me with a high dose, which was a mistake.

As soon as I quit Creon, I started feeling better, the pain was less and about the 3rd day symtoms had almost dissapeard.

The pancreatic enzymes are great, with the help of another gastroenterologist, I have manage to calculate the right dosage and make changes if I eat out, or if I have a latter dinner or eat more than what I normally eat.

I hope this is helpful

Mercedes

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Becky, Volunteer Mentor | @becsbuddy | Feb 4 10:10pm
In reply to @mercellort "When I took Creon, the 1st couple of days, I felt great. I could digest everything!..." + (show)
Profile picture for Mercedes Llort Wise @mercellort

When I took Creon, the 1st couple of days, I felt great. I could digest everything! About the 4th day I started having pain on my left side, underneath my rib cage, the 5th day the pain was intolerable, I coud not stand up strait, even breathing was difficult, I had a bloody stool, not diarrhea, but blood all around it (I still keep a photo). I have to say that my doctor started me with a high dose, which was a mistake.

As soon as I quit Creon, I started feeling better, the pain was less and about the 3rd day symtoms had almost dissapeard.

The pancreatic enzymes are great, with the help of another gastroenterologist, I have manage to calculate the right dosage and make changes if I eat out, or if I have a latter dinner or eat more than what I normally eat.

I hope this is helpful

Mercedes

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@mercellort Have you seen your doctor since the problem started? What did they say?

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debhammel | @debhammel | Feb 5 7:32am

For those who take Creon - how do you determine how much to take with each meal? My GI doc prescribed two capsules with meals and one with snacks. I take the 36,000 unit capsules, weigh about 135, and I also have collagenous colitis so my symptoms overlap. My meals average about 450 calories and usually have a snack in the evenings that runs about 200 calories. I split the dose during meals - taking one at the start of the meal and one about halfway through. For several months my symptoms were controlled but over the last 6 months I have started having diarrhea again that does not appear to be related to anything. I was placed on a higher does of Budesonide, which briefly helped. I have contacted my GI for further instruction and in the interim am doing my own research - and wondering if I should try increasing my Creon dose. What has your experience been?

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Profile picture for Mercedes Llort Wise
Mercedes Llort Wise | @mercellort | Feb 5 12:46pm
In reply to @becsbuddy "@mercellort Have you seen your doctor since the problem started? What did they say?" + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@mercellort Have you seen your doctor since the problem started? What did they say?

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@becsbuddy

I saw him, he didn't agree it was the Creon what cause the problem! I change doctor and got a different treatment with supplements, that have been great.

Regards

Mercedes

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Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 5 9:48pm
In reply to @debhammel "For those who take Creon - how do you determine how much to take with each..." + (show)
Profile picture for debhammel @debhammel

For those who take Creon - how do you determine how much to take with each meal? My GI doc prescribed two capsules with meals and one with snacks. I take the 36,000 unit capsules, weigh about 135, and I also have collagenous colitis so my symptoms overlap. My meals average about 450 calories and usually have a snack in the evenings that runs about 200 calories. I split the dose during meals - taking one at the start of the meal and one about halfway through. For several months my symptoms were controlled but over the last 6 months I have started having diarrhea again that does not appear to be related to anything. I was placed on a higher does of Budesonide, which briefly helped. I have contacted my GI for further instruction and in the interim am doing my own research - and wondering if I should try increasing my Creon dose. What has your experience been?

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@debhammel Like you I take 2 capsules with meals and 1 with snacks. It seems to be working. My problem is that I forget the capsules with meals! Have to work harder to remember! The GI doctor never said anything about calculating doses so I’ve just stayed where I am.

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gordond | @gordond | Feb 6 12:33pm
In reply to @debhammel "For those who take Creon - how do you determine how much to take with each..." + (show)
Profile picture for debhammel @debhammel

For those who take Creon - how do you determine how much to take with each meal? My GI doc prescribed two capsules with meals and one with snacks. I take the 36,000 unit capsules, weigh about 135, and I also have collagenous colitis so my symptoms overlap. My meals average about 450 calories and usually have a snack in the evenings that runs about 200 calories. I split the dose during meals - taking one at the start of the meal and one about halfway through. For several months my symptoms were controlled but over the last 6 months I have started having diarrhea again that does not appear to be related to anything. I was placed on a higher does of Budesonide, which briefly helped. I have contacted my GI for further instruction and in the interim am doing my own research - and wondering if I should try increasing my Creon dose. What has your experience been?

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@debhammel
I was on 36000 Creon after pancreas removal for about 18 months, I switched to to the 2400 Creon as I was going to bath room to many times.
I take Clearlax in my coffee every morning and a stool softener with each meal, not going as often now. My biggest problem is I cannot gain weight.

Gordon

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jkarmazin | @jkarmazin | Feb 8 11:07am
In reply to @gordond "@debhammel I was on 36000 Creon after pancreas removal for about 18 months, I switched to..." + (show)
Profile picture for gordond @gordond

@debhammel
I was on 36000 Creon after pancreas removal for about 18 months, I switched to to the 2400 Creon as I was going to bath room to many times.
I take Clearlax in my coffee every morning and a stool softener with each meal, not going as often now. My biggest problem is I cannot gain weight.

Gordon

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@gordond
I usually go up in Crean when I’m going too much!

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