I have no insight to offer. but mine were extremely high and the really bad pain came down quite fast . but the mild pain stayed around for aaaages. and I was so unwell. it took ages for the lipase to lower
the hospital assumed I was an alchoholic. they were so high

was your LFT elevated at all?

once it is slightly elevated they don't really bother to keep checking.

but my first attack .. 2nd and 3rd attacks were all quite different. I only have the blood results from this attack.
it depends on the reason for the attacks... ie if it was gall stone related ? or ??
good luck at your next appt. I have one on the 18th. gi no 3. .lost count of how many appts I have had re pancreas this year

Hi Sesser,

I think you and I have a similar CP diagnosis. I have been diagnosed with ideopathic small duct (alka minimal change) CP, on EUS I have 4 out of 5 criteria for a definitive diagnosis. My diagnosis was made on the symptoms plus the 4 criteria. My current GI doc says it's not unusual for CP to show up this way. He also says they are still learning and even though he's been practicing and focused on this area for 25 years, he sees something different every day. I had an ERCP (earlier with a diff GI) to try to find out why I was losing weight and having painful attavcks and constant nausea. The ERCP caused an AP episode where my lipase went to 18000. The ER doc said he'd never seen lipase that high. I got admitted and it was down to 3000 in 3 days and they sent me home once it dropped to 400-500. I was still in pain, but bearable. Well the ERCP helped the nausea, but the pain became constant and just got worse and my weight kept dropping. after 6 months of no progress, 40 lbs of weight loss I switched to my current GI who diagnosed the CP. It took 2 years of constant pain, a couple of docs, and ongoing weight loss to get my diagosis. I still have pain, but luckily the pain meds help me control it mst of the time.

BTW, what I've read is that small duct, minimal change CP is not usually associated with alcoholism. The current literature also states that alcoholism, while a cause, is not 80% of the cause as was previously thought. I'm fortunate, so far I've not had a doctor assume I was an alcoholic. It takes a lot to get a CP diagnosis, because once you have it, you can't get life insurance, long term disability, etc. so Drs. are very slow to diagnose. Good luck getting a diagnosis and finding out how to resolve your pain.

GG

Thanks guys. Ive seen so many drs. The scope dr said once again ZERO criteria, that my panc is "perfect". I do have an incomplete divisum but because its incomplete he said its n/a. The scope dr did say he feels its reoccurant mild pancreatitis but obv did not dx w CP since there is no damage. However, if it were reocurrant than why do I have pain every wk now? They used to be in flares, but no longer.

I did drink- a lot- in my 20s and early 30s so maybe this is why I have this. But I think CP from alcohol usually presents with calcifications.

Its all puzzling, and the scope dr was puzzled-he said though EUS was normal again, it is likely pancreatitis due to my symptoms and mild lipase. But again, my lipase has never been more than dbl and I always thought that mild levels were only related when most of the panc is dead

I personally think something is just irritating it slightly

My levels dont seem to change too much, they tend to be higher whenever Im puking alot and end up in the hospital. Even then they arent too high. I have cp where it doesnt really show up on the labs or tests except a ercp or scope test. Those always show irritation in my stomach and scarring in my pancreas. But I always have pain, every minute of every day, even with pain meds so i think it just defers from person to person

During my last hospitalization, my doctor told me that my levels were not where he would expect them to be with me having so much pain. I couldn't eat or drink anything that I could keep down. With CP, the levels can seem somewhat normal and you could still be in bad shape. Apparently, my pancreas is pretty beat up from this. I am getting scoped shortly so the doc can see what she looks like. There may be an old burrito stuck in it somewhere.

I have constant, never-ending, all day pain with this thing. The pain really wears me down. Please let us know what the doc says. I have a great gastro team but I live in a rural area and use a somewhat rural hospital so the docs don't have much expreience with someone like me. Thanks! God Bless. I will say a prayer for all of us so that maybe we can all get better someday.

Hi largefrog -

Your post made me laugh - "maybe there is an old burrito stuck in it somewhere."! Of course I feel terrible for your pain. Sometimes a little humor helps. Thanks for making me laugh :)

My lipase almost never go up. They went up a couple times once when my gallbladder was septic another time was last May, but it wasn't all that high.

But my labs have always been screwy... I now tell doctors don't look at my labs, if you want to treat me, because for some reason they don't tell the whole story..It took 57 years for docs to find out that yea, I can have a full blown infection & my white count still be normal...Or I can have a normal CT scan and 3 days later my gallbladder is full of stones & septic..So I no longer put any faith in tests.

Lots of prayers & good thoughts to you..
Cheryl

I guess what Im puzzled by is i thought that when CP only has mild elevation its because the pancreas is so dead that it no longer produces enzymes. Am I wrong? Trying to understand all of this!

I feel if that were my case and 90% of my pancreas wasnt functioning to not produce enzymes then something would of shown on my EUS tests. Maybe its something thats just mildly ticking off my pancreas.

Its all so confusing. I just wish it was something else, and obv part of me holds out a little hope since my scan was normal again.

It is a confusing disease. My lipase has not gone up since the first AP attack, at least not when they measured. The pancreas can recover very quickly after an episode so the blood levels go back to normal. I don't think I would have been diagnosed with CP if I didn't have 4 out of 9 criteria, and the weight loss, pain etc.just was added confirmation. My pancreas looks normal on a CT, Ultrasound, ERCP, or at least it did a year ago. The only test that showed any damage was the EUS. It's sick, but when you've been sick, in pain, etc. for 2 years, you just want to know what's wrong and how to treat it so you'll grasp at any diagnosis if it fits your symptoms.

Sesser, since you don't have any of the criteria, etc. just the symptoms, it's natural to want to have it be something else and it could be. Have they ruled out celiac, Crohn's disease? My GI said the pain, nausea from both of those could be confused with CP and he ruled them out first. A capsule endoscopy will rule out Crohn's and there is a blood test as well as a biopsy to check for celiac.

Good luck
GG

Ive had celiac labs and biopsy-negative. Ive been wondering (and praying) Crohns too-I see my dr soon, so will be asking for this. Is the capsule better than the colonoscopy?

I know its likely pancreatitis (though apparently not CP though it makes no sense if I have continued pain)-but youre right, guess its natural to want to have "proof" and look for other answers.