If you've been reading the posts, you know that I have chronic pancreatitis. Your pain sounds like mine when I am having a flare. It can be in the upper abdomen, or at the base of the sternum, and always radiates into my back, under the shoulder blades (particularly the left), and along the line where my bra hits. My amylase and lipase do not elevate anymore when I have this kind of episode. I have some friends with Sphincter of Oddi Dysfunction and pancreatitis, and they say their pain centers higher in the diaphram. Has your doctor suggested the possibility that your pancreatitis may have become a chronic condition, or checked into SOD?
Has your doctor suggested enzyme supplements to help with the pain, nausea and diarrhea associated with eating? They are very helpful in controlling all three of these problems. Not everyone loses weight, in fact many people I know have gained weight. I lost before I was diagnosed, but have gained it all back since receiving good medical care. You need to keep searching for the cause. Good luck.
Nanny
Thanks for your response.
I have read in other posts that you have CP. The episodes (for lack of better term to call them at this point) do come across the line where my bra hits. My mom was the first one to ask before I had my surgery it it felt like someone has tied a rope around you and was just tightening it. Between that description and then the description of feeling like someone had punched me and left their fist there are the only ways I know how to describe it.
My doctor did not mention it, but I did notice on my billing/diagnosis form from his office that the diagnosis code he had circled was "chronic pancreatitis". I don't know if he just circled the wrong diagnosis or if he is really leaning that way. We have not discussed SOD. I think he was trying to set a foundation to start from because I was only about 5 weeks post-op when I saw him last. At that time I had not developed the diarrha so he doesn't know about that yet. I've just been trying to live with it until I see him next on 10/15.
I'm trying to educate myself as much as possible so I'll know what questions to ask him when I go back. I dont' want to just "settle" for an answer of IBS because the tests I've had done have come back "okay" if there are more tests they can do. I don't want to live the rest of my life this way.
I will ask him about SOD and also about the enzyme supplements. I just wonder how open doctors are to the suggestion of continued pancreatitis when your levels are not elevated and the biopsy was "okay".
AGAIN, thanks for your response.