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.

[bob699]

I HAVE SEEN THE BEST DOCTORS IN MY AREA  FOR SOD AND THEY DON'T  SEEM TO CARE JUST MORE TEST WITHOUT ANY RESULTS$$$$$.  IF YOU  HAVE HAD SOD FOR TWENTY FIVE YEARS AND YOU HAVE THE RIGHT DOCTOR WHY DON'T YOU SHARE YOUR FINDINGS WITH US?     I AM  JUST STARTING ZENPEP FOR MY SOD  AND I AM GETTING SOME POSSITIVE REACTIONS TO MY PAINE.

[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

[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

[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?

[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!!!

[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!