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...
I have had attacks for 20 years now.
They were always severe, I mean SEVERE pain.
About 3 months ago, I got sick. Nauseated, lost 20 lbs and had constant pain. Just not the severe pain, more of a dull pain, but rather painful nonetheless.
The dr did an endoscope to make sure it was not an ulcer and so on. I have already had 2 ERCP and the were unhelpful in finding a cause of my pancreatitis.
The ERCP showed no ulcer or anything. Just the entrance to the duodenum looked misshapen is all.
Now, when the did the ERCP the first time, 10 years ago, all was normal. I had not ben diagnosed with pancreatitis yet.
The second one was last year. Again all was normal. But, he was unable to get into one of the ducts. It was too closed off.
My current GI put me on creon when I started losing weight, vomiting and being constantly nauseated.
It helped. I now throw up about once very 2 weeks and get nauseated a few times a week is all. No more weight loss.
I stopped taking the creon for 2 weeks and my stools started showing undigested food.
I started back in within days, stools were normal again.
The pain though is daily. And if I don't take my creon, it occurs moreso about 20 minutes after I eat.
They did a catscan and no damage appeared to be done to my pancreas.
Now, here is my question.
I am worried that since I am now having constant pain. But it is less severe that my pancreas is dying off. But, would that not show up on a catscan? And if it could be dying off and not detected via a CT, what test should I have?
Tonight my pain is pretty bad. I took a medication that can set off an attack, so the pain is more severe... like the old attacks, but it is still way less than it used to be.
I know, less pain sounds good. But I am scared it mean it is simply dying off.
Could the duller pain and the fact my body will not break down any food without me taking enzymes mean it is getting worse?
I know you can't answer that for me, but anyone experience anything like this or have any insight for me?
I might add too, I live 4 hours from the nearest specialist, so I have yet to go to one... just a regular GI. I would like to find a way to see if it is worsening so I will know if I should see a specialist.
Thanks for any advice, tips, or insights you might have.
They were always severe, I mean SEVERE pain.
About 3 months ago, I got sick. Nauseated, lost 20 lbs and had constant pain. Just not the severe pain, more of a dull pain, but rather painful nonetheless.
The dr did an endoscope to make sure it was not an ulcer and so on. I have already had 2 ERCP and the were unhelpful in finding a cause of my pancreatitis.
The ERCP showed no ulcer or anything. Just the entrance to the duodenum looked misshapen is all.
Now, when the did the ERCP the first time, 10 years ago, all was normal. I had not ben diagnosed with pancreatitis yet.
The second one was last year. Again all was normal. But, he was unable to get into one of the ducts. It was too closed off.
My current GI put me on creon when I started losing weight, vomiting and being constantly nauseated.
It helped. I now throw up about once very 2 weeks and get nauseated a few times a week is all. No more weight loss.
I stopped taking the creon for 2 weeks and my stools started showing undigested food.
I started back in within days, stools were normal again.
The pain though is daily. And if I don't take my creon, it occurs moreso about 20 minutes after I eat.
They did a catscan and no damage appeared to be done to my pancreas.
Now, here is my question.
I am worried that since I am now having constant pain. But it is less severe that my pancreas is dying off. But, would that not show up on a catscan? And if it could be dying off and not detected via a CT, what test should I have?
Tonight my pain is pretty bad. I took a medication that can set off an attack, so the pain is more severe... like the old attacks, but it is still way less than it used to be.
I know, less pain sounds good. But I am scared it mean it is simply dying off.
Could the duller pain and the fact my body will not break down any food without me taking enzymes mean it is getting worse?
I know you can't answer that for me, but anyone experience anything like this or have any insight for me?
I might add too, I live 4 hours from the nearest specialist, so I have yet to go to one... just a regular GI. I would like to find a way to see if it is worsening so I will know if I should see a specialist.
Thanks for any advice, tips, or insights you might have.
So, that is the background. As far as the pancreas dying off, they might not be able to tell from a CT scan, I actually had a doctor tell me flat out that I did not have CP from an ERCP after I was diagnosed (and knew damn well I had it!) I have even had MRCPs come back normal. I think one of the best tests for seeing how the pancreas is doing damage-wise is an Endoscopic Ultrasound (EUS) with pancreatic function panel. They doctors judge the amount of damage to the pancreas using a certain set of 9 indications (or conditions). They should be able to tell by the function test if your pancreas is dying off. That has been by far the most useful test I have had! And my five indications have been the primary factor in (finally) recieving the care I need from doctors after years of fighting.
I have the SAME reaction as you to less pain. I haven't had much pain for the past three days, although last week was horrible. I sat around and did very little and was very careful with my diet all weekend, and now I find myself worrying and wondering about my decision to have the TP-AIT (which I'm in the process of being approved for). What if I don't really need it? What if I'm worse off after? What if I'm 'getting better' (I know-probably not)? Or if the pancreas is already dying (dead) then, maybe I can save the money and just deal with things as they are? It's easy to know that I want the surgery (and I want it NOW!) when I am in a ton of pain, but even a day pain free (I hate looking a gift horse in the mouth) sends my doubts a-ringing. I know there is a panel of doctors who determined I'd be a good candidate, and wouldn't have made that decision if there were substantial doubts... but having the ball in my court about making the final call has me (possibly over)analyzing every single (non)factor. Good luck, keep us updated. I'm really interested to hear what your docs find, since I am going through a similar situation.
You sound like me in regards to the surgery. We are sick for months on end and when we get 2-3 days of relief we believe we are healed. :P But we all too soon learn otherwise.
Good luck with the tests, I really hope you can find some answers! Let us know what you find out!