Severe EPI with no currently found cause - still scared
Posted , 6 users are following.
Hello; im still living in fear of whats the matter with me.
I started to get oily slicks in my poop, it started being lose and foul smelling although the colour didnt not go pale or clay.
It was discovered that my fecal elastase was very very low, unit 12 when it should be way way wayyyyyy higher, and it showed a lack of pancreatic function, although weirdly I was not found to be a diabetic.
I was sent for a CT scan with contrast last august which was one of the most nervous moments of my life when i was waiting for the results, the results came back via a letter saying, there was nothing abnormal about my liver, gallbladder, my pancreas was of normal size and shape, there was no pancreatic duct dilation and no sign of anything malignant or inflammation, which was a relief, but it didnt change the fact i had severe pancreatic insufficiency, my follow up was rearranged due to a mix up with dates, i received the appointment letter after the actual appointment date. And my follow up was December 16th, obviously i was happy to be on the waiting list as i knew that had there been anything bad they would of fast tracked me
The doctor is now sending me for an MRCP no contrast this time, when i thought i was not needing other scans, which has made me nervous all over again, the doctor said it was to check for any cysts which has confused me because i thought cysts would appear on a CT with contrast.
Im scared and confused, if they find no cysts, what on earth is causing my EPI and oily stools, Ive had a blood test a few weeks ago in preparation for my MRCP and ive not heard anything back from that so i assume its ok.
Can EPI and oily stools have a cause that it sometimes not found out or understood? my doctor said that the CT scan did not detect anything suspect of a cancer, but i still have the fear of it especially with this MRCP scan.
Quick final note in case any doctors read this, I am only 30 years old, and i am hopeful that a young age will be on my side when the subject of pancreatic cancer comes up.
0 likes, 14 replies
jay16004 Boffintosh
Posted
has food intolerances and allergys been ruled out ? try to remain calm . i know its hard . the request for more tests could simply be because they are scratching there head as well . just a precautionary look to see if something else can be seen . pancreatic cancer at your age would be EXTREMElY rare . you should feel good that you are coming through these tests with negative findings . dont get hung up onnthe "cysts" part . cysts can offren be harmless and your doctor is just merely saying that if you had one this test would show it
jay16004 Boffintosh
Posted
when you say oil slicks what exaclty do you mean ? is it extremely noticeable ?
Boffintosh jay16004
Posted
its not like oil droplets but more like a film on the top of the toilet water, but you can tell that the stool is oily because of its texture.
jay16004 Boffintosh
Posted
is it easily noticeable at the top if the water ? also us it clear ?
Boffintosh jay16004
Posted
its not coloured but it is noticeable i think, more clear when you look in to the bowl
pippa58442 Boffintosh
Posted
Since your doctor said nothing sinister showed on your CT, you should believe what you have been told because these scans are highly accurate This is a positive sign. Try to remain calm and don't over think things too much. Ask your doctor plenty of questions about anything you don't understand or is worrying you. The more teats you have will give your doctor a better chance of diagnosing you.
heather38380 Boffintosh
Posted
I've been reading up on epi because im taking med classes and the pancreas interests me because its such a difficult organ to understand and diagnose but just to try and put your mind at ease their are loads of people who have epi and dont even know it they say its becoming more predominant and that lots of cases are idiopathic meaning theres no sinister reason behind it. do you still have your gallbladder? also a ct with contrast would show tumors in most cases so if all they're looking for is cysts thats a good sign as cysts can be managed.
Boffintosh heather38380
Posted
sorry for slow reply, thank you, i still have my gallbladder and my liver function is fine
jay16004 Boffintosh
Posted
also keep in mind epi is only a cause of cancer when it obstructs Biliary flow. between your labs and CT scan they would have detected a blockage . and even if you did have a blockage it would be more likely that it was from the gallbladder . have you had a liver function test ? this would give you your bilirubin reading which would show an obstruction if one was present
Boffintosh jay16004
Posted
my liver function in my last blood test was fine. im also not a diabetic which is even more confusing. my scan is in 15 mins
Boffintosh
Posted
just about to have my scan. i hope everything will be ok. side note, ive brought a new house recently, and today is the day i move in, how annoying lol
jono24631 Boffintosh
Posted
Hi there,
Just wondering how you got on with your results? Sorry, I know this post is 10 months old, but I'm going through similar issues. Been having yellowish, oily stools for several months now and my weight keeps dropping by 3-4kg in the space of a week and then it increases by a couple of kgs before dropping again. Also have abdominal pain which has been moderate up until this last week where it's now intensified and shots to my back more. I had a plethora of blood and urine tests done when this first started in June which have all returned normal. Had an ultrasound in July which was also normal (albeit with a slight fatty liver). The tail and head of pancreas was a bit obscured on the image but everything they did see appeared fine. Had a colonoscopy and gastroscopy in September which was all clear apart from a small hiatal hernia. This was followed up with a CT scan a week later which came back all clear with no irregularities spotted on the small intestine, kidneys, biliary tree, pancreas or gallbladder. Liver was fine but had a small lesion on it which they said was likely a blood vessel and benign. Since then my symptoms continue to persist and are becoming more prominent. Went to the doctors yesterday with upper abdominal pain and severe back pain. He now wants me to do a stool sample to test for pancreatic enzymes as he thinks EPI is the likely cause (despite normal pancreas on CT scan 3 months ago). Getting very scared that I may have something sinister going on in my body, so just reaching out to you all for advice. Sorry for the lengthy message - really need to talk to people who are experiencing the same problem.
Many thanks,
Jono
jono24631 Boffintosh
Posted
Forgot to mention: I'm only 31 years of age and haven't had any history of health problems. I drink but only socially (like once or twice a month and never in excess) and I have never smoked.
Risinski jono24631
Posted
Did either of you get diagnosed with something in the end?