Sphincter of Oddi dysfunction, what now?

[RachHenson]

Hi there, after suffering with chronic pain in my upper right quadrant for the past 8-10 years I finally got referred to a gastroenterologist today and after a thorough consultation, I was, for the first time in my life, diagnosed with and given a name to my condition - sphincter of oddi dysfunction. The Dr was quite certain that my condition was due to my stressful job and commented that it was a rare condition he had only seen in 4 other patients - all of whom were women in a similar position. I had 4 or 5 hospital stays, A&E visits over the years and each time bloods are taken and results normal. My Dr thinks that the condition will settle over the next couple of years but I'm inclined to disagree. When the episodic attacks come on I am doubled up in pain and though bizarre, I find lying on objects such as a hard deodrant can or similar hard object and rolling around on it gives me a little bit of relief but not enough to stop me wanting to admit myself for more pain relief.

I really don't want to face yet another 2 years of just 'waiting and seeing,' so am curious to know of any other options to investigate, treat, prevent or deal with the attacks please?

Any comments would be appreciated.

Many thanks

Rachael


This discussion is related to Sphincter of Oddi Dysfunction Questions.

[doubledee4444]

I really dont know what else to do. I have had 2-endoscopies,2- colonoscopies, blood work, ct scan and all were O.K. gastro says just IBS but I believe he is full of crap. I have had IBS for many years and this pain is terrible !! I have had it since my gallbladder removal in 2003. No one doctor will listen to me on how much pain I am in. What next? I have found info on SOD also and it totally sounds like the pain I am having but gstro said he doesn't think so. Won't do anything else for me even though I am in chronic epigastric pain. HELP ME PLEASE !

[jilly645]

Thank you for your input!!! I tried to get Buscopan here in the USA and it is not available so I ordered it from Canada. Still waiting on its arrival but i have heard a lot of good things about it! Amitriptyline I have also read about but it has sooo many side effects that I'm a little concerned but will end up trying if the Buscopan doesn't work! I have had SOD lll since May of 2010, the evening I had my Cholescytectomy!  I thought the Dr didn't do anything in there because the pain was even worse than before I went in!!
Sleeping in an elevated position (hospital type or adjustable bed) has really helped for "during the night " pain and discomfort!  Good Luck to everyone with SOD, it ***** and life is never the same!!! It's really hard on your spouse or significant others and family too!!! God Bless Us All with a Cure!!!    

[Sarsi]

Try and stay away from morphine......it can make SOD pain worse......

A sphincterotomy via ercp and stent placements are really only the most effective options; some have tried botox injections into the sphincter to paralyze it but this is not a permanent option.....there are also surgical options....

I hope you can get some answers and relief soon

Sarsi

[RachSODsufferer]

Hi, i know it was years ago you posted this but i am in the exact same situation as you with having the daily nighttime attacks and constant pain, i was on the same meds as you for months but the attacks just got worse and worse leaving me on morphine constantly, i had an ERCP sphincteroctomy (if that is how you spell it) and im just wondering if you had to eventually go down that route? Rachel

[Tanzie722]

Hello JMChick,
I have been in pain for year now and just like you I never had a pain free day even after having 3 sphincter cut procedure going on four.  I have been living on pain meds (heavy pain meds), with consist vomitting and going to the bathroom.  My husband keep trying to tak eme to hospital, but I refuse to go because every time they do blood work everything comes back normal and to make things even worse, and I know this may sound crazy, but my pancreatitic emyzes are only found in my stool.  so the docs know that I am having a pancreatitic attack with SOD pain, but do not know how to treat it since nothing is showing up in my blood work.  This is sooo frustrating and it is time where I just want to give up.  But is keep on going witha smile on face, knowing inside I am in so much pain where I cannot even sleep at night.

[JMChick]

So sorry to hear about your pain. I was in doubled over, bawling pain for months before it was discovered I had acute cholecystitis. After having my gallbladder removed I still had tremendous pain and was living on Oxycodone and Hydromorphone plus an antispasmodic and pantoloc. Even so I still never had a pain free day. Eventually I got a new GI doctor and between him and my family doctor I was diagnosed with Sphincter of Oddi Dysfunction. I had abnormal liver enzymes and blood tests, a dilated duct, and major pain. I had the procedure done to cut my sphincter. This has greatly reduced my pain but I still have some pain. If the pain continues my doctor says they can go in and do a nerve block so you won't ever have pain there again. There are also other meds to try. Don't give up. I totally understand. Find a new GI doctor, see about other meds, doing the sphincter cut procedure, or a nerve block. There has to be a way to relieve our pain. Please update how you are.