I had my gall bladder removed in 1986, the day after I delivered my first child. During pregnancy, I had repeated HORRIBLE bouts of pain in my upper right quadrant (the tennis-ball-stuck-under-the-ribcage metaphor works for me--this is the worse pain I have ever felt, including childbirth pains) and doctors were sure that I had developed gall stones, not uncommon when female hormones shift. I achieved complete relief from this pain for almost 8 years, and then it came back with a vengeance! After a couple of years of never knowing when these attacks would occur and I would be helplessly writhing on the floor in agony, I finally was diagnosed with possible SOD. Was referred to a specialist at University Hospital in Ann Arbor, MI who had done a number of sphincter bisections with the ERCP and I had the outpatient procedure done in 2002 with no complications. I did have a temporary shunt inserted, but this passed out of my system within a week. Once again, no pain for a number of years. Over the last year or so, milder symptoms have returned and in the last 2 months, two fairly painful episodes. I'm thinking of going back to the specialist to see if I can have the procedure performed again, as it did help me tremendously, although it obviously has not been a permanent solution.
A couple additional comments. I have found that quickly drinking a few gulps of ice cold water often stops the building pain totally...but I need to do this as soon as I feel the pressure beginning. Also, my painful bouts are almost always precipitated by having an empty stomach and particularly when drinking red wine on an empty stomach. And like some other comments I've read on this forum, morphine-based painkillers seem to make my symptoms worse.
I really appreciate the suggestions I've read here about different helpful medications to stop one of these horrible attacks. I've had too many trips to too many emergency rooms resulting in nurses/doctors being stymied what to do with such a pain-crazed individual. And it has been great finding this forum and receiving further validation that I am not nuts. This is a horribly stressful condition and I wish all you posters the best of luck in finding your own personal solution.
The only way to diagnose SOD is via an ERCP with manometry. The manometry is a very important part of the test because the diagnosis is dependent upon the pressure reading being high in the bile duct.
You may want to to ask your doc about doing an MRCP which will visualize the biliary system and look for any abnormalities. It's a non-invasive test. The ERCP with manometry is an invasive test and it carries with it a fairly high risk of subsequent pancreatitis. You need to discuss both of these tests with your doc.
Following a low fat diet may be of some help.
SOD is not that rare. Some studies suggest that up to 40% of those who have gallbladder surgery for low ejection fractions (with the presence of stones or sludge) can go on to develop SOD. It depends on the studies that you read - more conservative numbers are suggested to be about 14-17%.