“What it sounds like is Sphincter of Oddi dysfunction. It is a problem with the bile and pancreatic ducts where they are spasming out of control and the more they spasm, the more pain it causes. I have had this problem for two years now. It started on August 30, 2008. I have been to doctors who look at me to tell me that I created the pain to associate pain with eating. I have traveled to St Augustine, FL from CO to have a Dr who never even did an exam tell me that there is nothing wrong with me, even though I had an attack while I was there, and to go back to CO as he can do nothing wrong with me (as he hands me a prescription for more meds). I have had doctors tell me it is the pain of scar tissue of pulling from the removal of my gall bladder (even though it is the same pain I had prior to the removal of the gall bladder). I have had doctors tell me that I need to see a behavior therapist because the pain really does not exist. This after he cut the bile duct and diagnosed me with Sphincter of Oddi dysfunction.
I have had the manometry readings show the elevated readings for both ducts to prove they are spasming. I have had elevated Liver enzyme readings showing something is out of line with my liver. I have been hospitalized with pancreatitis multiple times. I have missed my son’s state football championship game due to pancreatitis. I have missed so much of my life due to being sick one week every month for the last two years.
I know your pain and the only thing I can say is keep looking for the doctors until you find someone who is willing to help you. What I finally found was a pain doctor who did the ERCP with Manometry reading showing the elevated pressure readings. Also I found a pain Dr who did a Celiac Plexis block that showed the GI doctor that it was not in my head and to keep looking for something. And I found a great GI dr who mentioned something about about another type of potential pain and my other pain dr thought about proactively trying some other pain meds.
I just kept trying. I am not done. I am still trying to get full relief. But at least I have a group of drs who finally believe me. It took almost 18 months and probably 8 drs before I found them. And lots of tears. I wish you the best of luck.
Also, Google. Google. Google. Don’t be afraid to know more than the drs. This is not a day where you can’t know more than them. Keep looking for someone until you find a dr. who really knows what they are doing. If it really is SOD, you need to find someone who is very experienced, as those ducts are very sensitive.
Best of luck to you all!”