Just diagnosed with EPI(exocrine pancreatic insufficiency) and I'm scared

Digestive health
1

So I've posted before bout some troubles I had been having for a few years which was always brushed off by the docs as acid reflux.

I I just went to a new gastro doc who did a fecal fat test which came back saying I had a lot of fat in my stools. He has diagnosed me with EPI and I'm supposed to start taking creon. 

I'm scared now to tell you the truth. I've done some reading and noticed that EPI usually doesn't occcur until late in CP or when a large amount of damage has been done to the pancreas. 

I just don't understand. I had a Ct scan with contrast done in February of 2017 that showed a normal pancreas. I have been drinking since then. Occasionally heavy at times, but nothing too ridiculous. I'm just trying to understand how my pancreas could have went from fine on scans to not working at all now.

I'm scared about what this can mean for my life expectancy because not only do I most likely have CP, but that it is most likely at an advanced stage.

Any opinions or support would be appreciated as I am expecting my first child in 2 months and am scared I won't really be around to see him grow up all the way.

2

Hi Greenear,

Im a 52 year old male with symptoms going back to 2014, I have test after test, recently went to Mayo clinic in Jacksonville about 6 mths ago, normal Ct scan, Normal Ct enterography, Normal MRI, Normal MRCP and just had an EUS normal, yet im still having symptoms, I have fat inn my stool, mild, and I have pain under right ribs through to back, my stool is bulky and floats, I think that I have chronic pancreatitis as well... I too continued drinking but not that much a few glasses of wine here and there, this Christmas I drank a bit more on about 5 occasions 3 to 4 glasses of wine, now I have more pain, im STILL UNDIAGNOSED, tomorrow I see a specialist, so I don't know, apparently this is very very hard to diagnose.

3

Hey bud,

I'm sorry to hear about all the trouble your going thru. I know how it is since I've been dealing with it the past couple years. I hope you get a diagnosis as to what is going on. And hopefully it's not your pancreas. Just trying to get the creon they prescribed me is not working. Apparently it costs about 1k for a months supply. Using any discount I could find I could only get it down to $700. Which I still could never afford

4

hi Again

Where you from? how old are you? listen, I know that pancreatitis is not a nice situation, but you have to make the best of it, I hear that from people all the time lol I know its frigging depressing, im not sure if I got this from drinking or a combination of alchol and med as I have an autoimmune disorder, ive been told for two years its not pancreatitis, so I still drank but not as much, still if I knew I would have stopped for sure while I had a chance. Give up the alcohol for 4 months see what happens you never know, last year I gave it up for 6 months and started with occasional wine after the doctor said it was ok, but I guess he was wrong.

Take care.

 

5

Hey man it's good to have someone to talk to about this. I'm 29 from NC, and got my first baby(boy) due in April. I guess just the stress from that and then this diagnosis has me over stressed but I'm trying to stay positive. Putting alcohol and my delicious cheeseburgers behind me. Gonna just try and eat healthy and see if I can't atleast stop this from progressing any further.

6

Yes its good to talk to others, im as scared and depressed as you, i too have a 3 mth daughter, i see a specialist today, i hace given up drinking but from what i read thos an be bad for some people, maybe just maybe u can life a pretty normal life, my doc said my fat in stool was mild, 11 grams, top of scale for normal is 7. When i eat well low fat no drinking i feel better. Give it a good shot 6 moths exercise as well take a good probiotic, then see, dont panic yet. Keep in touch.

7

CP or Acute P need to be taken serious.  NO ALCOHOL at all. NONE. LOW FAT DIET 

It is a very difficult life style change but if you want to survive CP those are a must.  

Anyone who does not take it seriously has no respect for the disease or the consequences!

Wishing you luck and happiness as a soon to be parent. 

8

I am taking it very seriously! Im just a little taken aback by this diagnosis of EPI.

I've had plenty of tests done. Even a CT scan done just a year ago that came back all normal. Now I have some fat in my stool and the GI diagnosis me with EPI. If My pancreas was that messed up I figured something else would have shown up by now.

They didn't even explain anything to me, just called me over the phone and told me I had EPI and when I asked the cause they just said they didn't know.

Is fat in the stool enough to diagnose EPI? All other previous scans/tests etc have been normal. And can you go from normal CT scan to EPI diagnosis in about 1 year? 

9

Get your doc to give you answers. It’s your life and you have that right to know about your body and what’s going on. Insist on more test if you can. Good luck.. 

I get a EUS on the 9th of February, and an nervous about what the findings may be.

10

I'm set up for another appointment with him this week. Hopefully I can get some answers and push him to do more specific tests for this.

I wish you the best of luck with your EUS, let us know how things go.

11

Greenear, I am in Chapel Hill, NC. Where are you? I'm female, 44yo and 9 years in on chronic pancreatitis (just diagnosed in July 2017, 3 hospital stays later and MANY attacks over the years). I quit smoking 3 months ago (after I threw a blood clot that suffocated 1/2 of my spleen). I've cut back on alcohol A LOT but not 100%. CREON seems to be working, but only if I stay hydrated. Can you afford it? Do the diet if you possibly can. Surprisingly, with CREON and Tramadol for pain, life isn't too bad. Psychologically, it still sucks, but it's good to find an active community to listen to. There's also a reddit channel out there somewhere, but this is less chaotic. 

12

Hi there! I'm from Washington, NC. Out near the coast. I was finally able to afford the CReON after trying all kinds of things to get the cost down. Finally was able to get it to $5 a month. 

Had a little bit of a misunderstanding with the nurses about my diagnosis. They just called me and said there was a lot of fat in my stool and that I had EPI and would need to take CREON forever.

Well I went back in for a follow up and apparently the doctor never diagnosed me with anything. He said he just wanted me to try the creon to see if it worked. Which it hasn't really, I've tried different doses. Taking an extra one here and there but little improvement. I'm gonna continue taking Creon for the next month to see what happens and then he will do more tests. I told him they had me scared and he looked pretty p****d, pretty sure that nurse got in trouble. 

I'm trying to not get into all the details but basically they don't know The cause but I'm not absorbing fat right. He's gonna do more tests soon if the creon doesn't help. On a side note he did say that he doesn't think I have CP since I've never been in the hospital for Acute and my tests have always been normal, even my CT 1 year ago.

I will update soon as I get some answers but I will say I've been feeling a lot better after talking to the doc. 

I'm glad to hear you are doing ok with your diagnosis and I wish you the best of luck in the future. NC represent! Lol

13

This is a really old thread that I just stumbled across, but I also struggled tremendously from a relatively young age with this. Just in case it can still help those here, there was a Harvard gastroenterologist doctor specializing in EPI (Dr Steven Freedman) who has a few helpful videos on the subject, and a book I just finished reading which was amazingly helpful called Primal Pancreas. How have you been coping with all this Greenear?

14

i to have just been diagnosed with EpI and on CREON which takes a bit of getting used to. googling EpI was a shock by my Gp its normal for diabetics (me) i have worked out to take creon everytime i eat something and eat a low fat diet. i certainly suffer if i eat something high in fat

15

i was finally diagnosed with EPI back in October 2019. since then I've been taking Zenpep, a PERT med, that luckly my insurance covers. if they didn't, it would cost $4,500.00 per month. Ridiculous, right? For without PERT we'd be dead,

Anyway, I was one of those people where they can't determine its cause - idiopathic they said. Myy pancreas appears normal on CT scans, no stones blocking its ducts, no sign of cancer. Indid discover that my first cousin, once removed, also had had EPI for years. Does anyone have family with it too? I'm just wondering if it could be in any way genetic.

over the last two years i was able to figure out the enzymes - how many I should take with certain meals. Originally I was told to take two with every meal, and one cap with a snack. But it really depends on how much fat is part of the meal. Fried foods take a normal amount of two, even when its just a snack. A scoop of ice cream merits a full two caps. If not, I suffer the next morning.

My go to snack is fresh fruit - mandarins, seedless grapes, bananas, water melon, cantaloupe, etc. With them I don't have to take an enzyme capsule. And the fiber helps keep me regular. Every morning I eat a banana and a good sized mandarin. I will also eat a mandarin as "dessert" after my dinner. I really believe they help with regularity and keeping my stool normal and smooth.

These past two months, I've been experiencing additional GI issues. Severe nausea, weight loss (again), lower abdominal pain etc. My PCP ordered a few tests., The lab work showed the CO2 levels in my blood were lower than normal. The AST also jumped by ten points. Next wednesday I'm scheduled to have an abdominal/pelvic CT scan. I'm not looking forward to ingesting the contrast solution. It makes me nauseous, and since I'm already super nauseous, I'm afraid I wont be able to keep it down without spewing it right back up. ugh. I will warn them.

Last, does anyone know of any good patient discussion forums where people like us can discuss our issues?

thanks,

KEN