Pain 1 1/2 yrs post ERCP

[Robyn421]

53 y/o female. Had gallbladder removed approx 15 yrs ago. December 2006 I developed recurring pain in upper middle section of abdomen. Many tests later, ERCP was performed. Doctor found many stones, cleaned them out and somehow enlarged the duct(?) to allow future stones to pass thru. Called me a "stone maker". Twice since then (once in Sept 2007 and once last week) I have had episodes of excruciating pain in upper middle section. Feels exactly like the pain prior to ERCP, as I remember it. Most recent "attack" happened in grocery store about 1 hour after eating. One minute I was fine, the next in terrible pain, sweat pouring off. Pain receded a bit, enough to drive home, only to have it start again in earnest. Entire episode lasted about an hour+. What could this possibly mean? Is there such a thing as passing a gallstone? The doctor who performed ERCP no longer in town, so I am starting from scratch. Thanks for your help.

[ohiogirl]

I have SOD, and yes...after years of having SOD attacks, your pancreas can suffer and I have met so many people who end up with pancreatitis along with their SOD.  Pancreatitis is completely different than pancreatic cancer, my thought is that the docs are not going that route as the symptoms are completely different.  From what I know, pancreatic cancer is not painful until it moves elsewhere; pancreatitis is extremly painful from the beginning and does not go away or get better if it's chronic.  It becomes a matter of pain management for chronic patients and I have met some who have gone so far as had their pancreases removed!  It's very extreme, but they are past the point of no return at that point.

There are risks to ERCP, there are significant chances of ending up with pancreatitis following the procedure, but you have to weigh those risks against what you are already dealing with.  Not to mention prolonging treatment, as you mentioned, can also cause damage to the pancreas.

I hope you are able to go to a specialist who focuses on SOD and diseases of the pancreas.  There are three major centers in the US that I know of that I would recommend - the doc needs to have performed literally thousands of ERCP's to be considered an expert.  Indiana University, U of Minnesota and The Medical Center at NC are the centers that I would trust most.

Please keep us posted, good luck!!!

[Jessie611]

I don't know anything about about the side effects of having a duct enlarged, but your attacks sure sound very similiar to mine.  Below is post I entered last week looking for help....it sounds like you may also have SOD.

I have been having what I call "attacks" for the last year and a half.  The best way for me to explain it is that it feels exactly like when I had gallstones.  However, my gall bladder was removed in August 2003.  The pain is as if I have a rubber band about 6 inches in diameter around my up abdomen and someone is behind me twisting it to make it tighter and tighter.  It seems hard to catch my breath and the pressure and pain get so intense that I sometimes vomit.  Finally, one day the attack just wouldn't go away and I ended up in the ER.  Since then, I have had numerous tests - CT, Ultrasound, MRI, Endoscropy, blood test upon blood test.  I can have an attack twice in a week or I can go months without one.  Needless to say, I am now forced to carry narcotics everywhere I go just in case one of these attacks pops up.  Last week, I had the worst one so far.  Even with the pain meds, it would not go away.  I couldn't eat or drink anything because it would cause severe cramping on top of the pain.  Went to the specialist AGAIN, they are now saying I may have SOD(sphinter of oddi dysfuntion) and will be scheduling an ERCP for September.  Does anyone know if this condition can cause damage to the pancreas and liver if not taken care of?  Both my grandmother and her sister passed away of pancreatic cancer.  I just don't understand why given my family health history their isn't any urgency to help me.  Also, if the test turns out negative they will just send me home and tell me to keep them posted.  Has anyone else experienced these symptoms and if so, what was the eventual diagnosis?