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.

[ArrowD]

I am a nurse and suspect that my husband has developed SOD.It has not been diagnosed yet and Im trying to convince him to go to the doctor. He had his gall bladder out 6 years ago and the pain started this past year. He has had a rue-n-y procedure because the common bile duct was damaged during the gallbladder surgery. His gallbladder had gangrene, no stones. The liver now attaches to the intestine just south of the stomach, and  above where the sphincter of oddi is located. The procedure was done by a liver transplant expert. He has had no digestive or pain problems post surgery until this pain developed last year. It comes and goes, varying, every 2 to 4 weeks. Sometimes he vomits. The pain often lasts for 24 hours. It does not seem to be associated with anything particular that he eats. He got it today on day 6 of a vegetable juice fast.  He will break the fast tomorrow if the pain is gone.

We live quite far from advanced medical care and we are leary of surgery. We also have to rely on the Veterans hospital system and have concerns about that.

What are the leading medications that help people as we think that a medicinal option should be tried first.  Is there any evidence that you know of that acupuncture has been of help to relax this muscle?

He is 64 and otherwise has been in very good health and active. His blood pressure is  115 over 70 so I was wondering about it being low for his age and some of the meds that may be selected.

Can you list the general protocols for taking these meds?  Is it daily  or just when the attacks come?  Thank you for any insight you might be able to offer.

[sharisnana]

Your story sounds very much like mine. I had my gall bladder removed, then developed chronic pancreatitis that seemed to not improve. After multiple tests and several years, my GI ran a doppler on th superior mesenteric arteries. That is where the problem was. SMA Syndrome, rare, but correctionable by surgery. I had surgery within a few days. I hope this helps someone else.

[Christopher R Watters, MD]

Have they suggested an endoscopic sphincterotomy or SOD manometry?

[mindylou5]

That is the exact same thing that happened to my 16 yr old daughter. She has since had a sphincterotomy & it has been 2 1/2 months & is back in the same pain again. Just wondering if you have had any results with anything else? We are thinking about trying botox injections, anyone have any success with that?

[LisaMarie969]

Thank you.  I have been diagnosed with SOD and have suffered with both elevated liver and pancreatic function.  I've had to be hospitalize this last time.  I left on Calcium blockers, but I normally have low blood pressure and worry about this.(Normal BP for me would be 96/64 or so).

I'm looking everywhere for more answers.  I haven't even ruled out my kids' idea of medical majuana.. but I've never smoked or tried it, so I'm also a bit afraid of going down that road too.

I'll check out your suggested website and keep researching futher.  

Thank you!

[lau95]

Can you let me know the name of your consultant in Southampton, as my husband currently travels to London to have his Botox for his sod it takes 1hr 30 to get there and soton is only 30 mins away. He has had one lot of Botox really helped would be great to have it done closer to home