Heavily suspected early-CP (22yrs old), no diagnosis. Anyone else?

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My main, most aggravating symptom is a chronic epigastric pain/discomfort, that doesn't seem to respond to anything. It is always present from morning to night and medication barely seems to help, including (weak) pain meds. I also have indigestion with meals, and pretty often I get bizarre stools/diarrhea with no real rhyme or reason.

My symptoms used to respond to antiacid which I would take in the morning and it would help me for the entire day. But those stopped working about a year ago. I started noticing something was DEFINITELY wrong when I would notice the pain right after waking up. Not the sunlight from the window, not the birds, but abdominal pain. Great.

I have had pretty much every test under the sun.

  1. Abdominal Ultrasound - NORMAL
  2. Gadolinium-enhanced MRI/MRCP - NORMAL
  3. Upper Endoscopy - NORMAL
  4. Blood Tests: Too many to count..

SERUM TRYPSINOGEN: The result was 9751 (not a typo), reference range of 169-773. This test was only performed once. This very high level did not seem to cause my physicians any alarm. This was a MASSIVE red flag for me because Trypsinogen is unique to the pancreas.

I have had fluctuating, persistent abnormalities with Lipase (Normal Range 0-60), and some with Amylase (Range 30-110). My highest recorded values were AMYLASE 168 and LIPASE 168 (same number for both tests, there was no exacerbation of pain during this time). I repeated Lipase and Amylase many more times in the following months, and values fluctuated chronically between normal and mildly elevated for Lipase, with elevations typically between 60 and ~95. Lipase would be mildly elevated if I ate fatty food prior to the blood draw. Amylase was only elevated once after the highest recorded number, thereafter it remained at the high level of normal.

I've had mild elevations in liver enzymes as well. These fluctuate too and I don't know what to make of it.

ANA was normal, IGG4 was negative. Fecal Elastase was >500, ESR and CRP were normal.

  1. EUS - NO signs of Chronic Pancreatitis per Rosemont Criteria (??), not one, but he did find "minimal gallbladder microlithiasis" as well as that the pancreas was "borderline enlarged and minimally diffusely hypoechoic". The EUS specialist doctor told me that these signs were non-specific. He doesn't seem to think I'm dealing with CP at all but he did mention that it's maybe possible that it's too early to detect on EUS. I got offered a repeat EUS in a year.

I got prescribed some pills to treat the microlithiasis but it's been months and they haven't really helped. He told me it can take months but I doubt this is the cause of my pain.

I have genetic testing pending.

So far it seems like what I'm dealing with is probably one of these 3

  1. Type 2 Autoimmune Pancreatitis? I'm talking to doctors about this now but it doesn't sound likely given the normal MRI. None of them are willing to take a biopsy either.
  2. The microlithiasis is causing the inflammation and pain (doubt)
  3. This is very early-stage chronic pancreatitis, probably due to genetics.

The physical pain is bad, but the mental distress is probably just as bad. I recently turned 22 and this has already destroyed pretty much all the pleasure I had in life, which wasn't much to begin with. I'm halfway through my undergrad, I've been trying to maintain my old lifestyle of studying/working and it's next to impossible with this STUPID pain. I've become miserable to be around and there is no joy in my life anymore. HOW am I supposed to deal with this for the rest of my life? That is probably the most gnawing question.

I can't do anything a normal 22 year old can do. It's pathetic. Literally everyone else around me is normal and I'm stuck with this stupid, nightmare of a chronic disease that is so RARE. WHY am I stuck dealing with this?

Low-fat diet doesn't really seem to help either? Today I barely ate anything, less than 5g of fat for the DAY, and the pain is at it's worst it's been for a while. There are days where I order takeout and eat a lot, and the pain is less severe. It makes NO sense.

Another huge source of annoyance is treatment from doctors. My GI is well-known in my city and he does ERCP, but I am treated like a hypochondriac or something. He ignores everything I say about CP and then offers me an antidepressant for the pain. Not just by him, but also anytime I've gone to the ER. I tell them EVERYTHING I outlined in this post, which should make it obvious that something is going on with my pancreas, and they just hand-wave it away and act like it's dyspepsia or somatic pain? Even my EUS doctor was treating anxiety/somatic pain like it's a possibility.

HOW? On what planet does anxiety show up with 3 different elevated pancreatic enzymes and epigastric pain?

Sorry, this post turned into a major rant. The pain is worse today than it usually is... but I've spoken to some people online and it seems like I'm not alone, so I thought I'd make this post for posterity's sake.

Anyone dealing with this issue? Any older CP-veterans with advice or wisdom? I am lost and I find myself just barely surviving day by day, not really living but not dead (yet). The suffering is pretty intense and I find myself reading about TPIAT as a daydream more than anything else.

Thanks in advance

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2 Replies

  • Posted

    How are you now. I feel so sorry for you. I am experiencing similar symptoms - though all my bloods are fine so far. I am considering paying for a scan privately. I also have pain under ribs and into my back.

    Hope you got some answers - the not knowing is so difficult.

    Julie x

  • Posted

    Hi, how is everything? Unfortunately I do not have any advice regarding your diagnosis but I can relate to your frustration with this illness. I'm 20 years old and completely understand the emotions you have with not being able to live a normal life anymore. I feel like all of my friends are out doing whatever they want while i'm constantly meeting with my doctors, in pain, or worrying about my illness. Here if you need someone to talk to. You are not alone!

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