Pancreatic insufficiency ..No cause?

Im 53, just diagnosed with EPI & Collaganeous Colitis. I was having diarrhea soo bad, soo much in June. The urgency & a few accidents sent me to the gastroenterologist. I've had bloodwork, stool test, CT scan with & without dye, colonoscopy. My elastase was 10. No known cause yet. Never had pancreatitis, no diabetes, no celiac. I am supposed to have an MRI & more blood work! I think I've had this for at least 5 years. I went from having IBS with constipation to chronic diarrhea. I had a colonoscopy 5 years ago. I told my doc then, I have diarrhea daily 2 or 3 times & he said, "you don't have diarhea". He retired & soo far happy with the new one. I wish I advocated for myself better! I knew something was wrong. I'm kinda disappointed that I have not lost weight. Currently I am taking Zenpep.

Thank you all for your replies. As I see most responders are in the 70 s of age or older so EPI could be related to age. This doesn't apply to my case, I just turned 40 and my symptoms started 15 months ago. I have recently been diagnosed with prediabetes so this could be related. I haven't found any explanation for my symptoms so far. Even EPI is just a possibility, according to symptoms (excessive gas, chronic diarrhea, abdominal pain )but not a defintive diagnosis as I haven't had the elastase test ( very expensive where I live).

@hopethereisnothing

I am only 38 and have EPI. It's hard dealing with it. All my blood work is normal and CT scan was normal. My Glucose was high but I wasn't fasting when they took the test. It's hard dealing with this. My GIndr said more and more younger people are getting this likely from the junk in diets. My stool elstate test was 200 when I was diagnosed. It's now over 800 on creon.

The 800 score was when I was on Creon. My Dr said that was just Creon doing it job. I'm still so scared of pancreas issues. Working on getting a second option but I'm not sure how to do that. My back pain is a burning sensation that moves around. I have had so many test including colonoscopy endoscopy and CT scans and blood work but everything comes back as normal but the extreme tiredness comes and goes. I'm still fighting and trying but it's taxing as I'm not sure what fight I should be fighting.

I was recently diagnosed with EPI and didn’t have any symptoms until I began losing weight and having greasy stools.
Never had and still do not have any pain.

@lslogan51 Welcome to Mayo Clinic Connect! Sounds like you were diagnosed with EPI which is the disease no one ever heard of. I suffered for 2 years with it, just figuring I ate something or someone didn’t wash their hands. Plus, I was going back and forth across country because my mother was so sick. Anyway, my neurologist ordered a colonoscopy which showed EPI. Boy, was I surprised! It’s now been 3-4 years (I have a bad memory) and I’m doing quite well as long as I remember to take creon with meals. I never had pain, either! Just remember to take creon with meals and you should be OK !

I also shown to have it by 3 day stool test sent to Mayo for results that showed the insufficiency. I went from 178 1/29/2020 to 153 in 7/5/2022 then to 145 by Oct 2022; HOWEVER the scales @ different Dr's offices were rarely the same and my own scale showed more accurate readings so I am sure my weight had been lower all along until I got a better/consistent scale.

i was placed on 12,000 Creon in Oct/Nov of 2022 but was not given or told about any specific 'diet,' so I ate anything I wanted and actually ate more than I ever ate in many months tho I did stick to grass feed beef burgers, chicken and many generally often recommended foods while still eating ice cream, chocolate (freak 4 it!) halfn'half in coffee, while taking choc cupcake for snacks 2-3 times a day or a few thin slices of Aldi's apple pie (apples seeming to have a settling effect on my digestion) both with small amt of 2% milk and/or even some thin slices of cheese Danish on some days.

When I went to Gastro on 1/4/2023 I weighed 147 - 147.6 and actually had gained 2 or so lbs so I asked if I could maybe cut back on the Creon from 4 to 3 times a day to see what would happen and he said 'Yes.'

I tried it and actually lost the 2 lbs gained plus a little more so I looked up a recommended Creon diet (of which there are many) and started it but I stayed @ 122.4-.6 since.

I am wondering if when my Dr prescribed the Creon he didn't mention any 'special diet' b/c he actually meant for me to NOT change eating habits to determine if the Creon would work with my 'normal' everyday diet? I saw his PR last week (who actually ran the whole program to find my problem last summer actually) and she was also a little vague and gave me a 'diet' sheet that was again different from any other I encountered in searching the web.

I must admit I had no appetite for many months prior to the fecal test results and I know that @ 80 yo I had to have lost a whole lot of muscle in the past 2 years, so I watch whether stools float or not and it seems that some style of eating (a lot of chicken turkey & pasta tho I don't know 'how much is too much' @ each sitting) has aided this noticeably and I do take fruit and veg (usually canned but not always) with each small normal 3 meals and some apple sauce with the Creon for the 4th dose B4 bed which they advised, but I am seriously now thinking of going back to eating everything I feel like eating and see if my weight starts to climb up past 142.6.

My situation still nags at me somewhat and I have gotten to a point where I don't really care what happens but decided to just 'experiment' with my 'diet' or ('non-diet'!) and keep a record of occurrences as I have for many years believed that it is sometimes worth letting your OWN BODY be your 'laboratory' and find out what does and doesn't work for YOU.

PLUS - many of these 'diets' themselves are quite different from each other to begin with 🙁 🙁

Blessings to all regardless ...

Nick