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.

[Snickers27]

To: candieflossie

Are you still pain free after taking the calcium channel blockers?  Do you experience any bad side effects from it?  I hope you're doing well.  I'm so worrried, and scared to have an ercp since it seems most people get pancreatitis and then only get temporary if not, no relief from sphincterotmies, stents, balloons etc.  What kind of diet do you follow?

[chahunta1]

I had my gall bladder removed because of gall stones. I am Diabetic. I have suffered for the last year, in tears. I dont wanna live like this. i have done MRI, CAT, Untra-sound, Upper gastric....all negative. I have gone from dr. to dr.. most suggested pain management. Like I am a *****. I got soooooo mad at them. I am an Operating Engineer, A tugboat guy, I can take pain. But this has ruined me. I am on my knees in pain and tears. There is a lump in my gut. The doc dismiss it as scar tissue. Sphincter of oddi or scar tissue that has tethered causing me grief. My forehead get cold and clammy when I move around. Can anyone help me? Dying seems like a good way out. E-mail me at ***@****

[HessyKat]

I also have been dealing with right side pain close to where the gallbladder was removed in May and pain under my right ribs around to my back. I have had numerous trips to the hospital where they did CAT scans , ultrasounds and all they said was my bile duct was dilated. This last trip to ER they said my liver enzymes were high but not seriously. So, Ive called and called my surgeon who took out the gallbladder and couldnt get an appointment until December.  Finally, i got a call from the nurse for me to go to Gastro doc and have some test on the bile duct. I am so scared and just wondering what all kinds of symptoms did anyone have with the dx. of the spincter of oddi? Thanks

[shankate]

I have been having RUQ pain for the last few weeks constant.  I have had this pain before a few times after my gallbladder was removed 2 years ago but it has gone away after a couple of days.  I have had 2 CTs, ultrasound, many blood tests. My liver enzymes were pretty high at first but have gone down on the last work up. All other tests have been totally normal. My lipase was barely high. My GI and the ER have told me that it was just IBS despite me not having constipation or diarrhea. My PCP believes me but has limited ability to help. The pain is worse when I eat but even when I wake up in the morning it hurts. The doctors gave me Vicodin for the pain but it only mildly works and I hate taking it.  Any help would be much appreciated.

[ajcauff]

I have been diagnosed with SOD for about a year and a half now.  I have had every test from ultrasounds to liver biopsy to ERCP!  I have also had my sphincter cut to help relax it and allow the bile to flow easier, but that has not seemed to help.  I have attacks about every 6 months that leave me in extreme pain in the upper right side of my abdomen and sick for a couple days with elevated liver enzymes.  I am usually hospitalized for pain control as the exteme pain is comparable to the intensity of labor pains.  My gastro/liver specialist diagnosed me with SOD and said that if attacks became more frequent or liver enzyme levels became more extreme and did not lower to normal after attacks, a surgical procedure could be done but it was very risky.  I am very interested in the botox injections you have received!  Is this a newer treatment for SOD?

[didnof]

hi, i have been getting pain in my back, which the more i read i am thinking it might be SOD. this only happens maybe 1 or twice a week and has been going on for about 3 months. usually 5 minutes or so after i eat i get a pain, which feels like a golf ball is being pushed down the centre of my spine. no matter how much i stretch it out it wont go, i just find myself sitting down and contorting my back in different positions to try and  get rid of the pain. i am seeing the doctor about it tomorrow so it will be interesting to see if this is what it is.