New to exocrine pancreatic insufficiency (EPI): What helps?

@hopeful33250
Thank you for sharing!

Hi All,

I just received an email about an EPI webinar. It takes place on April 20, at 2 p.m. EST. Here is a link if you are interested in registering:
https://zoom.us/webinar/register/WN_gevocrO0SwqbdjR62PJdyg

Probably because bismol doesn’t appear to be for diarrhea and simply coats your system. …Imodium is for diarrhea allowing for absorbing of fluids pre-exit. …just an idea. Check label for any side effects.

@venture should I do another elastase test without bismol?

The med is likely affecting the test. Your D-symptoms are common with severe EPI. -Especially losing weight can mean you are NOT digesting food thoroughly, thus diarrhea. CREON and ZENPEP are excellent meds to boost your digestive enzymes. Which must be taken WITH your meals at the beginning. This should involve multiple creon or zenpep pills each meal. There are NO over the counter enzymes that can treat EPI. If possible stay off any prescription digestive meds for few days before your elastase test. If you are taken enough Creons you diarrhea should improve

Anyone? 😭😭😭

20m. For the past 4 months I have been having diarrhea and light colored stools with every meal I take. The stools are type 6, light brown, floating, no oily slick on toilet, easily flushable, not smelly. I'm also losing weight and am fatigued. Doc first prescribed bismol thinking that I have ibs. I did elastase test while on bismol and it came back at 422. Then another elastase test 15 days later. It was 86??. I'd say the stool that I gave for sample was also very loose. I went to 2 docs about it. One said it's not reliable as you have diarrhea. The other one said epi and put me on kreon. So I did a test by myself while taking bismol and kreon and it came back at 811??. I'm saying is it possible that bismol might have altered the results? I was taking bismol to firm up stools cause otherwise it would be diarrhea. Does this indicate epi?

New EPI sufferer here. At least I was diagnosed Sep 2025. However, I believe my pre-EPI life started around 1993/94. That was when uncontrollable weight gain happened then up and down swings in weight. Started having dental problems with my gums (bleeding, receding, surgery) then cysts under my skin. Last decade or two feels like I was in a brain fog as since I've been on Creon the last couple of weeks I finally feel awake and aware of my surroundings like never before. I'm not having to sleep 12+ hours a day anymore.

I did have to quit my job to deal with the chronic side effects that started in early 2025 and the increasing brain fog. Diarrhea 12+ times a day, explosive at times, was afraid to leave the house, constantly in diapers (still am as afraid of what might happen if I get my dose of creon wrong). I'm 61. In 2025 I lost 35lbs which is simply unheard of for me but that was when the EPI really swung into action. I've been mostly weight stable but have been inching down in weight. My highs and lows are both dropping though not as fast as 2025.

I was also diagnosed diverticulitis/osis back in 1999 or so.

I'm pretty sure my problems are genetic. Both my parents had undiagnosed diverticulitis/osis (from the same symptoms I saw in them 50 odd years ago) and potentially EPI mostly on my maternal side (mother, grandmother).

Funny thing is the only reason I knew to ask for the EPI test is that our Australian Shepherd dog that we adopted 8 years ago from rescue had really bad poop, underweight and nothing was working until the vet diagnosed him with EPI.

My GI specialist was next to useless. When I first came in she tested me for Celiac (negative). Scheduled a colonoscopy that was clear. CT scan from ER visit (blood in stool) turned out my pancreas looked normal. Then radio silence for 3 months as my diarrhea morphed from just a messy sh*t to undigested material of just about everything I was injesting. My probiotic tablets were not digested. The food I could point to and say what part of the meal it was (tomato skins, onions, etc completely undigested).

I'm really beginning to wonder why EPI stool tests are not part of the norm in doctor/patient relationships. All my years of being overweight, developed ED when I turned 50, and all the other problems I had are starting to revert. I'm actually getting some feeling back in my ED which is a lost decade to me now.

I'll be back later.

Hi @dianehrdr - sorry that you have to deal with overall fatigue on a long-term basis. That, and the treatment you've been through, sound tough to deal with. And it sounds like some of your symptoms continue. Ugh.

I'm sorry to hear that you've found professional advice lacking. I am, however, encouraged that you've learned from members here on Mayo Clinic Connect.

Are you saying you are finding that practitioners outside of traditional medicine are quite expensive?

If you do have some nutritional advice you think would help other members here with EPI, will you share some of that?

I too, have an overall feeling of fatigue, long term, since before and now after 2 years of treatment (creon, supplementation, healthy diet, food sensitivity testing and elimination, minimal alcohol). I still experience regular diarrhea and am always at least 20 lbs underweight. I have found more frequent, smaller snacks/meals are best, but can't seem to address the weakness, loss of muscle, weight loss, fatique...
I have stopped seeking professional advice due to lack of information on subject and in the case of wellness practitioners, lack of sustainable finances. I do, however, learn from sharing information on this chat site.
I have no family history, have not been diagnosed with Pancreatitis (MRI), although my symptoms began about a year after a serious bout of Covid.
I feel like I am not providing enough advice, but also am willing to share some nutritional advice from my nutritionist if anyone is interested.
I too, would like to know what you have been prescribed.