I hear ya. I have only been sick for 3 years. My pain is constant, 24/7. Always worse after I eat anything, but my enzymes don't elevate, and ct shows nothing. Praise the Lord, right? But I feel ya, why can we be in so much pain, yet no one can see it. My doc told me what you are saying, eventually, the pain may subside, but only after the damage is more and the pain receptors get worn out. When is it too late to do anything about it? My pain is so much worse now, than when I was hospitalized for my attacks, so I struggle with what to do? I guess I won't go back to the ER until I start vomiting uncontrollably. This disease is so frustrating. Prayers and hugs, Heather.

go an facebook and check out the group "life without pancreas" sooo many people on there with soooo much information... :)

There has been so much damage and so much scarring that when I have an attack, my enzyme levels often come back normal or close to it. I do, however, often have a high white cell count. No cause for that has been determined.

The pain is persistant and constant. I take oxycodone and dilaudid. I take a lot of phenergan to control the vomiting. It's not the nausea so much...being a diabetic, if I start vomiting, it makes me extremely dehydrated and causes my blood sugar to skyrocket. That means IV fluids since I'm simply not able to orally consume the volume of water needed.

I can only have clear liquids by mouth anyway...all my nutrition is TPN via a PICC line. My pancreas no longer makes digestive enzymes so I can't absorb any calories or nutrition by normal means. I have problems with chronically low potassium and magnesium.

The CP has progressed unbelievable fast. It's only been a year since I was diagnosed and I'm already at the stage where I require TPN and I have moved up the "drug ladder" much quicker than anticipated.

What a life.

For me, the pain has grown less (and different) over the years. I thought I was getting "better" too. The reality is, CP doesn't go away and it doesn't get better. According to my GI, at least 10% functionality is necessary. I am lucky to not be diabetic, but I do have malabsorption. I take Creon and it has allowed my protien levels to come back to the normal range. From what I understand, malabsorption is when the body cannot digest fat or absorb protien. Once protien levels drop, the body begins to starve causing malnutrition and then ascities -- the fluids leak out of the organs and fill the peritoneal cavity. When it started happening to me I just worked harder at the gym. I was working out 6 days a week. I didn't realize that I had no fat, because my stomach began protruding... which made me work harder... not knowing I was actually making it worse. My point is, don't wait for weight loss. If you are having malabsorption issues, you may want to have your protien levels checked regularly. You don't have to be skeleton thin to have malnutrition and ascities. If you google ascities, don't let if freak you out. You have to be very advanced with the malnutrition to look like the pictures they show.

I think my constant pain that gets worse with food is bile duct pain (basically Sphincter of Oddi). It spasms when my pancreas releases the enzymes. When I had pancreatitis, my enzymes levels never changed either but there was a distinct difference with that pain. It was absolutely unbearable.

In my reasearch, I have found many articles that diagnose chronic vs acute vs acute recurring pancreatitis based on symptoms, not test results. A big indicator is whether or not Creon helps. It helps me. Therefore I categorize my illness as pancreatitis and treat it as such BEFORE I cause further damage to my pancreas.

My Mom went through this same disease course and was never diagnosed until her pancreas self-digested and she died from pancreatic cancer at the age of 48. Her amylase and lipase levels remained normal the entire time. My advice to all of us: take care of our bodies and minds, stick to our diets, stop smoking and drinking even if your pancreatitis isn't officially diagnosed. Your doctor can call it anything he wants just so long as he offers you the proper treatments. My Mom's sister is 65 and going strong after being treated for 'IBS' for 25 years--with Creon!

My enzyme levels rarely elevate, which makes the ER tell me that I do not have pancreatitis. I know the oain. Same almist everytime. For me its center of upper abd boring through my back. I have so many ct's that I am afraid of having more. This last time I did not get one and they fiallly went by symptom. I work, and therefore go to the Cleveland Clinic for everything. Not impressed yet. Just saw a new endo and I hope the metformin, and dieting works. Good luck to all

This is all helpful input. Thank you. I have gone on and off of Creon so many times, just to test it. And it does help. So I think that is my best route to help my pancreas.