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Sphincter of Oddi dysfunction, what now?
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Sphincter of Oddi dysfunction, what now?

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.
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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!
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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.
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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.  
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Avatar_f_tn
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!
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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.
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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.  
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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?
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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 ***@****
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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
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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.
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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?
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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.
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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?
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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
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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.
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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?
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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
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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!
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Morphine is known to cause sphincter of oddi dysfunction or contraction based on its properties.  Could be cause
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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!
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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!!!
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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?
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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
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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
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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.
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So sorry to hear about your pain. I was in doubled over, bawling pain for months before it was discovered I had acute cholecystitis. After having my gallbladder removed I still had tremendous pain and was living on Oxycodone and Hydromorphone plus an antispasmodic and pantoloc. Even so I still never had a pain free day. Eventually I got a new GI doctor and between him and my family doctor I was diagnosed with Sphincter of Oddi Dysfunction. I had abnormal liver enzymes and blood tests, a dilated duct, and major pain. I had the procedure done to cut my sphincter. This has greatly reduced my pain but I still have some pain. If the pain continues my doctor says they can go in and do a nerve block so you won't ever have pain there again. There are also other meds to try. Don't give up. I totally understand. Find a new GI doctor, see about other meds, doing the sphincter cut procedure, or a nerve block. There has to be a way to relieve our pain. Please update how you are.
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Hello JMChick,
I have been in pain for year now and just like you I never had a pain free day even after having 3 sphincter cut procedure going on four.  I have been living on pain meds (heavy pain meds), with consist vomitting and going to the bathroom.  My husband keep trying to tak eme to hospital, but I refuse to go because every time they do blood work everything comes back normal and to make things even worse, and I know this may sound crazy, but my pancreatitic emyzes are only found in my stool.  so the docs know that I am having a pancreatitic attack with SOD pain, but do not know how to treat it since nothing is showing up in my blood work.  This is sooo frustrating and it is time where I just want to give up.  But is keep on going witha smile on face, knowing inside I am in so much pain where I cannot even sleep at night.
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Hi, i know it was years ago you posted this but i am in the exact same situation as you with having the daily nighttime attacks and constant pain, i was on the same meds as you for months but the attacks just got worse and worse leaving me on morphine constantly, i had an ERCP sphincteroctomy (if that is how you spell it) and im just wondering if you had to eventually go down that route? Rachel
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Try and stay away from morphine......it can make SOD pain worse......

A sphincterotomy via ercp and stent placements are really only the most effective options; some have tried botox injections into the sphincter to paralyze it but this is not a permanent option.....there are also surgical options....

I hope you can get some answers and relief soon

Sarsi
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Thank you for your input!!! I tried to get Buscopan here in the USA and it is not available so I ordered it from Canada. Still waiting on its arrival but i have heard a lot of good things about it! Amitriptyline I have also read about but it has sooo many side effects that I'm a little concerned but will end up trying if the Buscopan doesn't work! I have had SOD lll since May of 2010, the evening I had my Cholescytectomy!  I thought the Dr didn't do anything in there because the pain was even worse than before I went in!!
Sleeping in an elevated position (hospital type or adjustable bed) has really helped for "during the night " pain and discomfort!  Good Luck to everyone with SOD, it ***** and life is never the same!!! It's really hard on your spouse or significant others and family too!!! God Bless Us All with a Cure!!!    
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I really dont know what else to do. I have had 2-endoscopies,2- colonoscopies, blood work, ct scan and all were O.K. gastro says just IBS but I believe he is full of crap. I have had IBS for many years and this pain is terrible !! I have had it since my gallbladder removal in 2003. No one doctor will listen to me on how much pain I am in. What next? I have found info on SOD also and it totally sounds like the pain I am having but gstro said he doesn't think so. Won't do anything else for me even though I am in chronic epigastric pain. HELP ME PLEASE !
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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.
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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!!
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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.
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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!
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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.
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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!!!
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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
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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!
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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?
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Have they suggested an endoscopic sphincterotomy or SOD manometry?
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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.
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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.
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i just had the botox procedure done, i also have sphincter of the oddi. did you have any side effects after the procedure? my doctor said its suppose to take up to 2 weeks before it starts working but its been 5 days and im still in a lot of pain. so im just nervous that its not going to work
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Please can you give info on where botox is available in uk as my doc in london said that he hasnt got authorisation yet but thinks i should have it before the ercp as he thinks the procedure is really risky for me
Anyone know if it is available in australia?
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I too have got sod type III I am under UCLH and they too are waiting authorisation of botox injections, I have had sod for 2 years now the pain started straight after cholecystectomy but has got worse over time I have such bad pain I have to go by ambulance to hospital to have a high dose of iv morphine it is the only thing they relieves my pain I have 2 children and would rather go through labour than this pain. My local hospital in brighton are fantastic ok they don't understand the condition but I just take my letters to prove what I have and they give me pain relief straight away which is all I want at the time is too be pain free then they ask me the same questions over and over but the more info you can give them about the condition the easier it gets to get treated.
I have tried amitriptyline -no effect doctors and I agree not to put me through ercp due to risks as my kids have there lives disrupted with my frequent day trips to hospital let alone weeks in hospital, buscopan has no effect either.
I also can't connect any triggers I have tried no fat diet and have lost way too much weight I am now at 6 1/2 stone it ended up getting psychological as I thought if I don't eat I wont be in pain but have realised now that I still have attacks of pain so there is no point, I only take paracetamol  as certain medications start it off sometimes I can tolerate oramorph and other times it starts it too.
sod is a very hard condition to understand as I can't put my finger on anything specific that can help I have also become agoraphobic  
as I am worried there wont be a hospital near by or to have an attack in public would be mortifying as I scream and curse where I cannot take this pain, I hope they come up with some new advances in medicine but I have come to the decision with the docs that I would rather have these attack than have pancreatitis which can be serious and life threatening so I would rather be here for my children and in pain than take any risks, I will try the botox when it becomes available but as stated before it is not permanent and not guaranteed to work good luck to u all
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Hello tiger princess , I don't want to worry you but you can get pancreatitis from having SOD , I know because it happened to me the pain is unbelievable , I go to southampton on Wednesday to find out if I can get Botox , UTC
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an update and query, bigbezzer I am aware it can cause pancreatitis hence why I refused an ercp -botox has been given the go ahead and I am due to have a round after Christmas aswell as having that they want to do an endoscopic ultrasound to check bile ducts even though mri confirmed them clear, I am still dubious about the botox as I don't know the success rate hence query if anyone has had it done yet? my doubts are if the sphincter isn't functioning properly anyway what advantage would paralysing it do ?
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Just up date , I had botox done on 21/11/13 and feel iam getting some benefit after 3 weeks , I now get no bloating and the pain as decreased , it is still there but not as bad about 3/10 compared with 6/10 so I would say that is positive , the procedure is quite simple and done within an hour , the team in Southampton is superb and I wouldn't have any reservations about having it done again , utc
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My doctor diagnosed me also with Sphincter of Oddi Dysfunction after I had severe upper stomach & back pain similar to my gallbladder attacks before it was removed in 2001.  I also had some nausea & heartburn.  I also had gastric bypass surgery in 2009.  I am taking 20 mg 2x a day of omeprazole & .125 mg of hyoscyamine (an anti-spasmodic) up to 4x a day.  I was also told it wouldn't hurt to take an antacid like Tums.  I was told that there is a surgery they can do, but it's not a one time surgery since the scar tissue that's keeping the sphincter from working properly would grow back.  Also, it's more of a high risk surgery due to my gastric bypass.  Also, following a lower fat diet 30 grams or less is supposed to help.  So far the meds are helping a lot, but I still have some upset stomach & diarrhea on a regular basis.  Praying that changing my diet will help those issues.  
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  You may still have Gallstones- I did after my Gallbladder as removed. I had to have an ERCP to have it confirmed - the stones were too small too detect on ultra sound.  The duct narrows and acts as a Gallbladder.   The DR. Had to cut the duct and the stones fell out.  I still have them- I am a producer I guess! Please see your Dr. And ask for an Ultra sound and then an ERC P if nothing shows on the US.
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  You may still have Gallstones- I did after my Gallbladder as removed. I had to have an ERCP to have it confirmed - the stones were too small too detect on ultra sound.  The duct narrows and acts as a Gallbladder.   The DR. Had to cut the duct and the stones fell out.  I still have them- I am a producer I guess! Please see your Dr. And ask for an Ultra sound and then an ERC P if nothing shows on the US.
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morphine  and Demerol are contraindicated in SOD  nitro relieves my pain with residual muscle soreness   nitro relaxes smooth muscle  works for cramps in the rectum too  I had a sphinterotomy  years ago  now having severe scapula pain  up to shoulder rt side  see GI on thursday
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I have also been diagnosed with SOD after years of pain, I had my gall bladder removed when I was 21 I am now 44, I suffered diarrhea, vomiting and chronic pain to the middle of my stomach and upper right quadrant, firstly I was diagnosed with Bile salts malabsorption I couldnt drink the solution for it and found a tablet form called Colesevelam Hydro-chloride it really does work BUT I still suffered the SOD pain 24/7 and it would peek once or twice a month so bad I had to go to hospital for pain relief and I.V due to not being able to eat or drink for days this has slowly got more and more frequent 2/3 times a week I have also had so much time off work and felt guilty and almost quit my job. I have tried Ampytriptilin, Buscopan, Tramadol, G.T spray, Co-codamol, Morphine none of which worked. I was admitted again 4 weeks ago the nurses and consultants were brilliant (Treliske Truro Cornwall) I said I am petrified of having the op as I have 5 children and both my parents died at 50 and 58 I dont want my children to be with out me, I was allowed home on mothers day :D with pain patches (Matrifen Matrix 25 mgc) and tramadol and it really works I don't have any pain at all although I woke up 1 night in pain and was gutted thinking I was back to square 1 again but to my relief the patch had fallen off after half an hour of it being on again I was pain free. I do know that canabis is also great for pain.
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Avatar_n_tn
I was suffering severe extreme pain in my upper rt quadrant. Had multiple visits to ER. Doc said it was a Heart problem. Went to Cleveland Clinic and they advised me to get a Gastro. Did find one locally and he thought it might have been abdominal wall nerve entrapment as a result of GB Surgery. Pain continued and I keep researching the issue. I could not relieve the pain with anything until finally I read about Nitro sub lingual for SOD sphincter of Oddi dysfunction. It stopped my spasm and pain immediately. Saw a Doc at Johns Hopkin and he thought it was a remote possibility. Had a HIDA test and sure enough the SOD was not working properly. Awaiting an ERCP to relieve the Sphincter. I think I suffered from this for the last 40 years. having my GB removed did not help with the pain. If you are in a similiar situation ask your Doc for Nitro sublingual and if it relieves your pain WALA! good luck.
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Have you tried sublingual nitro when u have an attack? Talk to your Doc about SOD and Nitro.
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