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.

[Sarsi]

See a psychiatrist?!?!?!!!! I had a GI Dr say that to me once....and I point blank refused!!!

You have a physiological issue, something not working correctly in your body, and even given a diagnosis!!! it's NOT IN YOUR HEAD!!! Man this makes me so angry for them to say things like this....

I have sod II and biliary issues, and also take amitriptyline 50mg....there are many other medications that may help you, not just the amitriptyline....

Don't take this as an answer and let them write you off!!!

[mharrell815]

I have been diagnosed with SOD III.  I am taking amitriptyline 10 mg.  It doesn't help that much.  I tried 25 mg but I got too emotional.  GI doc says I need to see a psychiatrist.

[jilly645]

Dr. Watters I appreciate you coming on this site and offering your professional opinions to all of us!!  I had the sphincterectomy on the CBD side and it did help temporarily however the pain has returned daily/hourly especially worse after ANY thing other than water goes down my esophagus! I was told that I could have another sphincterectomy on the pancreatic duct but will most certainly have a pancreatic attack as I did with the prior surgery. I also have anatomically too narrow & too short of CBD and PD as well as too small of an Ampula of Vater. So I don't think much can be done for my SOD lll because of my anatomy but I need to have some pain relief.  I heard about Buscopan from a blog and must say it helps sometimes. I am occasionally able to eat more than before I started taking it.  Do you have any thoughts about Buscopan?  How about CCBlockers or nitrogycerin as other possible treatments? Again thnak you for your input!

[Christopher R Watters, MD]

It certainly sounds like this is impacting your life significantly. As an aside, morphine is the worst narcotic for this problem as it causes the most spasm of the sphincter of Oddi. I don't understand allthe doom and gloom of a sphincterotomy. There is a small risk of pancreatitis but this is an endoscopic procedure performed on a daily basis. If the diagnoss is solid it should help you significantly. I have to say though, if the doc is that uncomfortable maybe he's not the one to be doing it.

[Scottishlassie77]

I have had upper right quadrant pain for 14 years now, i had my gallbladder removed 10yrs ago but still suffer this pain it used to be a couple of bouts of pains a year that would last a few days then go but in the last 2 years when i get pain it is constant for 3 months and have had so much time off work that i have now given up my job, ive had every test & medicine going and the only thing that helps dampen down pain is oral morphine. My consultants at local hospital have said there is nothing more they can do for me and referred me to a specialist 100 miles away who i have seen a few times this year, he diagonsed SOD just by my notes! He gave me botox injection 4 months ago but just made pain worse! Now he has suggested that i have sphincter cut to release pressure but given my age (35) past history (pancretitis) he thinks i am in very high risk for developing pancretitis and said he doesnt want me to leave my 4 young children without a mum!! This has frightened me so much so that i cant make a decision whether to have this op or not, i live in daily pain and im in agony after having a meal. Should i have the op? I have spent hundreds of pounds on alternative therapy and although treatment give short term relief it doesnt cure my symptons, i feel if i am to have any quality of life i have to have op and i have lived with this pain for 14yrs and am so fed up of it but consultant said so many people choose to have op through desperation and the risks of complications are so high but the only alternative is to carry on taking daily medication that doesnt even help!!

[Christopher R Watters, MD]

I would recommend going to www.romecriteria.org . This is the organization that your physicians should be getting their information from regarding SOD and other forms of biliary dyskinesia. Most cases of SOD can only be diagnosed once the gallbladder has been removed. The simple combination of biliary type symptoms, common bile duct dilation, and elevations of liver function tests, when retained stones have been ruled out makes a strong arguement for type I SOD. The vast majority of patients will see significant relief of symptoms following an endoscopic shincterotomy in this category. It is interesting that in many cases of SOD the symptoms are actually worsened by removal of the gallbladder as it was acting as a bellows or reservoir and masking the dysfunction downstream.