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.

[Marisen]

If this is, as the doctor claims, Sphincter of Oddi dysfunction, there is probably no amount of rest, relaxation, or "wait-and-seeing" that is going to have any real effect on the symptoms you're having. This is a PHYSICAL problem, not psychological. It makes me wonder if your current Gastroenterologist got his medical degree out of a cereal box, because SOD is a narrowing of the valve that channels bile and pancreatic juices. The main treatment I've seen for that is to widen the valve surgically to prevent the bile from backing up and causing pain. A scary prospect, I know, but so is living in agony with no relief for 2 more years. It will probably be best at this point to consult with a new Gastroenterologist who has your best interests at heart. Try RateMDs.com or Vitals.com to look up physicians in your area and see how their patients rate their overall performances. USEFUL!!

Hope you get relief soon!

[Drcarb11]

Hi,
I was living with the same pain for 2 years when I was diagnosed with SOD.
The only way to be certain is to have a ERCP with Mannography(?), meassuring the pressure of the Sphincter of Oddi and than have through an ERCP a Phincterotomy ( cutting the muscle ) done.
Stents, Balloons and Botox Injections into the sphincter are also an option. The risk of this procedure is pancreatitis.
Unfortunately all this did not work for me. I had 8 ERCP's done before a surgeon was called and they had to do a major surgery called transduodenal Sphincterotomy with minor pancreatic duct sphincteroplasty. This involved a 8 day hospital stay and a long incision on my belly,- very painful.
I had the surgery done on March 4th and I am still in pain. I lost 70 pounds in the last 2 years because of vomiting a lot and my pain. I still cannot keep any solid food in . I have to go for a follow up back to the surgeon,- lets see what he has to say than.
You need to find a different doc. ERCP is the only way to diagnose SOD. He should know this.....good luck to you.

[CandieFlossie]

I've suffered this same pain on and off for years and have not had a proper diagnosis although I know I have chronic pancreatitis.  I even saw a general surgeon who could not help at all recently, so I went home, got on my computer and discovered sphincter of Oddi dysfunction.  What I discovered quite by chance is that calcium channel blockers are sometimes prescribed.  They relax the sphincter muscle and it eases the pain.  Why I am certain that SOD is my problem is that I was on CCBs for BP but stopped taking them about a month ago when I suddenly got an endless dose of pain in my right shoulder blade which is what led me to the specialist.  I started taking the BP meds again 2 days ago and the pain has gone.  I am so relieved.  

[Rosscobandit]

Hello,
I have been experiencing this pain since I was 15 and I an now 22. Being male my doctor said it was a rare case but all the signs point to sod. I'm having some further tests so have been given no prescription pain relief yet. Although he recommended an over the counter anti-spasmodic drug used for IBS. It's called mebeverine hydrochloride. It has different trade names but the mh is the active ingredient needed. I tried taking this the day after the pain when the pain was just dull and I felt better. Hope this helps as the pain is ruthless!

[JLBashleigh]

Rachel
I have had SOD for approx 4 years and have had every test going and been hospitalised several times
However I now have botox injections which I have been having for about 2 years and I am completely pain free. I am only one of a few to have the advantage of being able to have this done as my Consultant at Southampton General Hospital is an expert on Pancreatic diseases and applied to the GMC to do this procedure in the hope that it may work.  My consultant is extremely pleased with the results and so am I!! I have the botox injections into the spincter of oddi muscle approx. every 4/5 months and while it is not pleasant to have done it has left me pain free.

[Daniii123]

Hello. Would you mind sharing the name of your consultant at Southampton hospital please?  I am desperate for a consultant here in the U.K. Who knows something about SOD!

[Snickers27]

Hi there.  I'm glad that the anti-spasm drug is relieving your pain.  I'm a 27 y/o female with post- gallbadder removal pains similar if not worse than before surgery.  I'm thinking now that it might be SOD, and have been trying to research non-invasive treatment methods.  I have my first post op follow up with my surgeon tomorrow and i'm going to bring this up.  I appreciate your feedback about the medicine and only hope that if i do have SOD, i might get relief from the meds as you have.  Are you still relatively pain free now?  I hope so.  Any advice you might have for me would be so helpful right now.  Thanks!  God bless.  

[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.

[bungee6]

I've had SOD starting a year after gall bladder removal (20+ yrs ago). Have not had the manometry but all the symptoms point to it. I am fortunate that my attacks are infrequent however I am unable to take codeine or Immodium. I have a surgery upcoming and will need pain relief. Does anyone have any suggestions for pain relief which will not bring on an attack?

[UKSODit]

I've posted a few individual comments to some of you, just figuring out how to use this web-site.  I looked on here about 18 months ago when I was first diagnosed with SOD type III.  I have two main contributions to make to the discussion.  

First, a trial is being run in the USA for surgical interventions, and listening to the podcast by the English doctor in charge, Dr Peter Cotton, is really quite reassuring, you realise you're not crazy after all:  here's the link:
http://www.muschealth.com/multimedia/Podcasts/displayPod.aspx?podid=808&autostart=false&action=rate#

Second, I have managed my situation and got my life back by using medicine to "manage the pain".  I know that's a horrible sounding phrase when thrown at you by a doctor who doesn't know how to help you, but, in this case, it can be the best approach, if your stupid SO is not actually causing any damage to your liver or pancreas, just causing you pain, then masking or managing the pain is a workable option.  I take Amitriptyline, 30mg daily and Buscopan, 30mg daily.  Amitriptyline was originally designed as an anti-depressant but don't worry, you would have to take much higher dose for it to do any good for that purpose and in suggesting you take it, your doc is not implying that you need it for that reason.  It takes several weeks to work fully but has done the job for me.  My daily pain is now zero, my bad night-time pain attacks have petered out (although I  have dihydrocodeine and / or oxycodone (morphine) tablets for those).
Best of luck everyone

[collrunner]

I had the same problem. I had my appendix removed then two years later my gallbladder. and now two years later the pain is back. I was diagnosed with SOD, but I didn't want to have the ERCP due to the risks and the rate of not being successful. I went to alternative medicine which has helped a lot. I still am not 100% but I feel a lot better and I think I am on the way to recovery. If you are interested you can study on the Hulda Clark parasite zappers. I went to a doctor that used this method as well as some other techniques in Akron, IA.

[KarenLavender]

It's really assuring to know that other people are having or have had issues.  I collapsed over 10 years ago due to pain, was given a scan and was informed I had gall stones.  I the had an ERCP which gave me acute pancreatitis and left me hospitalised for 15days.  Once this cleared they removed my gallbladder.  They never found any gallstones!  I then suffered with abnormal liver function tests and I kept getting told they weren't too abnormal to do anything about.  Every now and then I also got pain in the upper right hand side just around the ribs.  I always got told it was stress.  Finally, after all these years, I paid to see an expert privately, he only saw me two weeks ago, I had a biliary scan with morphine on Friday and am having my scan without morphine on Monday.  I was physically sick at the scan with morphine - anyone know why?

[kuritsa]

I had my gallbladder removed in 2002 and same pain as you all just under ribcage and radiating to the back. after all this, they just put it down to scar tissue. After reading all the post, how can they say there is nothing wrong.... makes me wonder. Thanks everyone, I am going back to tell the proffessionals what is wrong with me...crazy isn't it

[ptadvoc8]

It's possible the nausea you experienced the first time was from the morphine, which is well known to cause nausea — they should have told you that was a possible side effect of morphine or maybe administered an anti-nausea drug with it, but that's water under the bridge now... Hope your second testing attempt went well and that you are soon on the way to recovery!

[jjduf]

Morphine is known to cause sphincter of oddi dysfunction or contraction based on its properties.  Could be cause

[rose4christ]

I recently in the last years found that I too suffer from pacreastist! My first diagnoise was January! Suffere constant pain when sitting, standing or laying down. The doctors kept saying nothing show up to justify. They kept telling me it was not my heart, and that they did a lot of test on me, where everything were normal. Why must everything being normal in their eyes, be enough.  They look at the patients like we 'need' their attention so bad that we would make this stuff up. I suffer pain that feels like a heart attack and I am afraid, that if I really have one, that I am going to be in some serious denil, because they keep dismissing me as to say nothing is showing up as negative, what do you want us to do. Recently two Weeks ago the pain Started radiating around my back, and front rapped around my right side. My organs feels like a scarey feeling, which I soon learned was having spasms. These esophagus pain and spasms is now causing, heart spasms, and causing other organ to spasm to. They act like I am making it up, because there is nothing showing them otherwise. Then I started now getting a little diaria and gas bloating Pain with much softer bowel movements.  They tell me that my liver is showing abnormal, and my kidney is showing abnormal, but they are not showing failure. I don't understand. They said these organs where not normal, but they are not doing anything to treat this, so called abnormally. I am wondering what's wrong with me. I went back to my doctor for pain in my back and chest, and they say it a pitched nerve, or a neurological problem, or a form of authristis They sent me to a Rhumatologist who said that the test he got from them showed that my metabolic system was show abnormal, and my kidney ways up, my rhumitosd factor was active ! But he said they didn't do the right test to see if I was having another pancreas attack!  He retested me and com to find out my lipase was elevated high. The gastroantologist said he was puzzled! Hum mm? What I'd this? He is a socialist in this field and he is puzzled. Well, what do he think I feel!  Help me somebody filter though all this. I am new here and after reading all your stories, I feel better knowing that I have a place to go and hear other people's stories. You all has helped me a lot, but what is napping to me. Never heard of gallbladder enlarged bile ducts, or SOD, or any of these other things.  sounds like ya'll telling my story in different ways. Please advise!

[meandmysod]

After 23 years of pain I was finally diagnosed with SOD. The doc perscribed nitroglycerin tablets that go under the tongue like heart patients take. IT WORKS. I had been told over the years that it was spasms in the lining of my rib cage and, this is the best one, muscle spasms from breastfeeding. After having pancreatitis I realized the pain was the exact same.  I researched my symptoms, came across SOD and went to a gastro specialist.  I never told him I had looked around online...docs don't seem to like that..I laid out my history and continued symptoms truthfully but in a way that guided him to the SOD diagnosis. Now I just pop that little pill as soon as the symptoms start, rest a few minutes and it's back to my life. I still have these attacks several times a month (it's worse since i'm on nexium) but now i can stop it in its tracks.

Wooohooo Nitroglycerin!!!

[Samsicle418]

I had my gallbladder removed back in 2008 and about a month later the pains were back.  I was sent to every doctor imaginable in the western New York area because nobody knew what it was.  Finally I got the answer I was looking for.  SOD.  I've taken about 10 different medications now and nothing has helped me.  The nitro pills that everyone says are miracle workers didn't help at all either.  I'm sick of being in pain but way to scared about the ERCP since I've heard only like one person say it worked for them.  Pancreantitis is no joke and I've seen my father have to deal with that.  No thanks.  I just don't know what to do anymore about the pain.  I'm a college student and trying to concentrate in a 3 hour class with massive pains in the right side of my back and abdomen are horrible.. no matter which way you sit, the pain never disappears.  What do you do to ease the pain?

[bob699]

I HAVE HAD SOD FOR ALLMOST TWENTY YEARS.  I HAVE HAD ERCP WITH SPHIMCTOTOMY THREE TIMES. I HAVE HAD ALL TEST AND TRIED ALL OF THEIR MEDICATIONS.  I STILL SUFFER EVERYDAY THEY GOT NOTHING FOR US. THEY NEED TO MAKE US A NEW DRUG THAT THAT STOPS THE SPASM AND DOESN'T UPSET OUR STOMACHS. EVERYBODY THAT READS THIS THAT HAS SOD NEEDS TO WRITE A LETTER TO THE  FDA AND TELL THEM  OR NOTHING WILL BE DONE . THE DOCTORS KNOW WHAT SOD IS AND THEY ALLSO KNOW THAT THERE IS NOTHING FOR IT THATS WHY THEY CAN GIVE YOU THOUSANDS OF DOLLARS  WORTH OF TESTS AND THEN LOOK AT YOU LIKE YOUR CRAZY AND TELL YOU THERES NOTHING WRONG WITH YOU.   WRITE YOUR LETTERS TO          THE HONORABLE  MARGARET HAMBURG,M.D   COMMISSIONER FDA  10903 NEW HAMPSHIRE AVE        SILVER SPRINGS, MD 20993~0002

[Reruho]

You need a new doctor, now. Your best is to find one that knows something about SOD. I have suffered with this for 25 years.
Reta