Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

623 Members
2,803 Posts
0 Online
Gastrointestinal System
/ Pancreatitis Support Group

Thank god for elevated numbers!

njdevil2
njdevil2
My wife has suffered through her last half dozen of attacks with no lipase elevation, or slight elevation. She has had her Gallbladder removed, sphincterotomy, and stent placements. Well, she hadn't felt right for a couple weeks, and then she woke up one morning and couldn't bear the pain at home. Her Lipase was at 15,000. It sucks that she is having an attack and her numbers are high but atleast it shows the ER and Dr's that she does have and knows when she is having attacks even if the numbers are normal. We are going to head to John Hopkins in a couple months. Their Pancreatitis center looks good, but its a couple months for an appt.
nibbor
nibbor
Grr! Just typed a long reply and it's gone. In summary, I'm in much the same place as your wife. My doctor told me with all the work I"ve had done in the area, my pancreas may NEVER who elevated levels again. Something about damaged nerves. I try to explain this to the ER/hosp but they just look at me like I"m crazy!

Trying to find articles that show this phenomenon so I have can show it's something the medical community discovered not something I made up. Will send you them if I find some, if you like.

Best wishes to your wife. March I was back in the hosp for a few weeks and had elevated enzymes (and infected liver) and I was RELIEVED to have PROOF I was sick! How crazy is that!

Sending good thoughts your way. Take care, Robbin
Paula1960
Paula1960
I went through years of what you're describing. Finally I met the right doctor. He documented my episodes to prove that my levels didn't increase untill 3 to 4 days after the onset of pain. He included my case study in his last book. That was years ago, but I think a lot people that post here have the same issue. From what I understand, my pancreas, as it continues to deteriorate, can't produce the enzymes so I haven't had a test showing elevated enzyme levels in years.
nibbor
nibbor
Were you able to get anything in writing? I asked my specialist but he didn't seem to want to write a note. I try and try to tell the ER and Hospital doc's about the phenomenon but if my levels aren't up and the MRI doesn't show anything, they don't believe me.

It's SO FRUSTRATING! There must be something we can do or bring with us to PROVE to the doc's that we still are having an episode regardless of the levels!

Paula, so sorry about your poor pancreas. I wish it could grow back, like our hair! That would be awesome, aye?
Paula1960
Paula1960
The doctor that researched this passed away 2 years ago. He retired from practice about 20 years ago. The GI I've been seeing for the last 20 years just retired. ... So, nope, I have nothing in writing and I get to start all over with a new doctor. Blah.

There is research out there though. The Cleveland Clinic calls it "pancreatic burnout." Lab Tests On-Line even states that "As chronic pancreatitis progresses, amylase and lipase may be normal or decreased even during acute attacks."

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/gastroenterology/chronic-pancreatitis/

http://labtestsonline.org/understanding/conditions/pancreatitis/start/2