Gastro Help - Can't get DX

[Deb0223]

A few years ago, after a year of pain and no diagnosis, it was found that my gallbladder was draining at zero!  When my gb was removed my bile duct wasn't draining correctly and the surgeon "thought" it could have been the anesthesia.  If not, my doctor could do a "simple" procedure in his office to correct it.  After recovering from the surgery, the pain was still there.  My gastro doc said he didn't do an ERCP (the simple procedure the surgeon referred to) in his office.  I was sent to a University Medical Center for evaluation and it was found that both my bile duct and my pancreatic duct were closed down, a condition the doctors there told me preceded my gallbladder shut down.  Ok, I have an ERCP with stents placed in both ducts.  Less than a year later the procedure had to be repeated.  Now, I am having similar pain, almost like pancreatitis, it comes, gets better, then comes again.  I can't get a diagnosis!  The doctors think I am crazy - that is always encouraging.  If it is my ducts, why do they keep shutting down?  

[CalGal]

Your not crazy. You may unfortuantely be dealing with a condition called SOD - sphincter of Oddi dysfunction which can be difficult to treat. This is an overview: http****

I would suggest you read through the information and then sit down with a better understand of what is going on and have a long talk with your doctor.

One of the problems with SOD is that not a lot of docs are up to speed on the condition, and it unfortunately doesn't have clear-cut treatment. However, whenever and ERCP is done, that test should be done WITH manometry which measures the pressure in the duct (common bile duct) and at the sphincter (the muscular opening to the duodenum). If the pressures are raised, then and only then should the sphincter be cut (sphincterotomy). In some, that can greatly reduce the problem for long periods of time - hopefully. In others it's not that successful. But if the pressures are not raised, that sphincter should not be cut.

I'd really suggest you get a copy of all of your records and read through them. You need to know what they found and what was done, and it's possible you may find your diagnosis within those pages.

You're not nuts, but you've got to get a basic understanding of what is going on in general with the bile/pancreatic/gallbladder system in order to talk with your docs and get some answers. And that's one of the things you need to do - talk with the doc. If you don't get answers even after you show them that you know something about what might be going on in your system, you need to find a doc that you can communicate with so that you can help yourself.

Conditions that affect the biliary and pancreatic systems are not easily 'fixed.' You need a darned good doc to help you with this.