I’ve been quiet lately, as I haven’t been feeling great.
For years (11 to be exact) I’ve been having attacks of pain on the upper right hand side of my stomach. It happens a couple of times a year, starting with pain and pressure and fever. The fever goes away after a few hours, but then I’m in pain for days after I eat anything.
The first attack happened when we were on vacation in Las Vegas in 1994 and sent me to the emergency room. It mimics the symptoms of gallstones, so that’s what was assumed but ultrasound showed nothing so I was sent home with pain meds. Local doctor said it was reflux. Three years ago, my gallbladder was tested and found not to be functioning properly so it was removed. But I still had a few of these episodes.
A couple of years ago, I did some Googling and I suspected that the problem was sphincter of Oddi dysfunction.
Sphincter of Oddi dysfunction and papillary stenosis are conditions which occur when this sphincter (opening) mechanism is disturbed. When the hole is too tight, there is a backup of bile and pancreatic juices. This can cause pain (biliary colic). More prolonged obstruction may result in bile leaking back into the blood stream, resulting in abnormalities of the liver function tests, or even yellow jaundice (discoloration of the eyes and skin). Also, blockage to the pancreatic orifice can cause pancreatic pain or attacks of pancreatitis.
I mentioned this to the GI in Stamford and he blew it off. He said my problem was a pulled stomach muscle. The only reliable way to diagnose sphincter of Oddi dysfunction is with ERCP which is an invasive test. And it’s rare…certainly less than 4% of the general population have it from the reading I’ve done.
So fast forward to New Jersey. I’m due for a colonoscopy (joy) and I go through the prep (no joy). Somehow, drinking a gallon of Gatorade as the doc prescribed didn’t sit well with me and it brings on another attack. No fever this time, but pain on the upper right side and nausea. In the consultation with the doctor, I had mentioned my history of these attacks and he suggested doing an endoscopy at the same time as the colonoscopy as long as he was going to have me there to see what was going on. The colonoscopy was fine, but in the endoscopy he said he saw some bile in my stomach and he noted that my ampula papilla, the little hole that the sphincter of Oddi surrounds was “fibrotic” (small and hard).
3 days later and the pain doesn’t go away, so I went in for blood work which showed slightly elevated liver enzymes. Not not joy. Monday night I had a MRCP (a more advanced MRI that looks specifically at what’s going on with the liver, gallbladder & pancreas) and that was normal. So my wonderful doctor suggests sphincter of Oddi dysfunction as a likely cause of my problems. I think he was surprised that I knew exactly what he was talking about. Once I get this thing treated I’m tempted to send all the paperwork back to the doc in Stamford with a big “I TOLD YOU SO” stapled to it.
The way to diagnose and treat sphincter of Oddi dysfunction is through ERCP (Endoscopic Retrograde Cholangiopancreatography). It’s like endoscopy, in that a scope goes down the throat, but they introduce dye and watch how it moves through. Specifically when they’re looking for this condition, they test the pressure of the ampula papilla in something called sphincter of Oddi manometry. If it’s too high, they can cut the sphincter right there and it typically solves the problem. There are 3 types of SOD (explained here). Because I had abnormal liver functions tests, I’m either Type-I or Type-II which means that the sphincterotomy should do the trick.
The big risk in ERCP is that it can bring on an attack of pancreatitis. My doctor does ERCP, but he doesn’t have experience doing this manometry thing so he wants to refer me to someone who does (which will also give me a chance for a second opinion from someone who is familiar with this condition). Now I’m waiting for that referral. I’ll likely have the procedure done in Philadelphia or Manhattan.
This page thoroughly explains the problem and the treatment.
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Here’s a few question I wonder if you guys can help me with?
1. Do you get diarrhea following flare ups and is it bright yellow?
2. Do you get pain only on the right side or does it cross the midline to the left?.
3. Do you get a lot of stomach gurgling, rumbling etc with flare ups.
These 3 criteria should exclude SOD from the diagnosis but there are more than a few cases here with these symptoms reported and high pressures on manometry testing.
Hi to everyone here with SOD.I have had this disease now for 10 years and have had to figure things out on my own to calm down the attacks as it was getting out of hand.Going to the ER was not possible as i am a stay at home mom of a 2 year old.I have also had my gallbladder out because i did have stones.I was so relieved to hear tht i had stones as i was misdiagnosed for 4 years.I had my GB out and the next day i had one of the worse attacks i ever had.I called the surgeon immediatley and they said to go to the ER.At this point im exhausted and cannot take another attack.Anyway there are some things that may help some of you.Everyone seems to have very similar symptoms but almost everyone has something different that either helps the attacks or makes them worse.I still to this day have an attack almost everyday,but not the ones that make me go to the ER.All of them suck and are very painful, but i have some things that will either stop them from comming on or will cut your attacks down to a very short time.(even though a second of it seems like eternity)I have 2 children and i will have to say those attacks for me are worse then labor.Anyway 1st thing is prevention.First thing for me is iI DO NOT TOUCH BEEF.BEEF GIVES ME MY WORSE ATTACKS EVER AND THE ONES THAT PUT ME IN THE HOSPITAL FOR 6 HRS+.I KNOW IT MAY BE HARD BUT I EAT PORK ,CHICKEN, FISH ,ANYTHING JUST STOP EATING BEEF!!!!!!!TRUST ME.ITS WAY TO HARD FOR PEOPLE WITH THIS DISEASE TO BREAK DOWN .NOT TO MENTION BEEF IS PROBABLY ONE OF THE WORSE MEATS TO HAVE.I LOOK AT IT LIKE IT HURTS MY STOMACH THIS BAD WHAT ELSE DOES IT DO TO MY BODY?ALSO ALCHOL WILL TRIGGER AN ATTACK SPECIALLY BOOZE,HARD LIQUOR,SHOTS,BEER WINE ETC…. THIS WILL BRING ON AN ATTACK TRUST ME.HAD TO GO TO THE ER WAISTED WITH A MAJOR ATTACK AND THEY COULD NOT DO ANYTHING CAUSE I WAS DRUNK SO I HAVE BEEN DRY FOR 3 YEARS NOW.ALSO PAIN MEDICNE IS OFTEN GIVEN TO PEOPLE WITH SOD.THIS WILL TRIGGER YOUR ATTACKS BIG TIME SPECIALLY VICODIN AND TYLENOL 3.THE OTHER NARCOTICS WILL ALSO MABYE NOT AS BAD BUT THEY WILL.IF YOU NEED TO BE ON THESE MEDS AS I DO I HAVE BEEN ON PAIN MEDS FOR 3 YEARS NOW EITHER CRUSH THE PILL TO DUST AND MIX IT IN SOME JUICE OR THEY DO MAKE LIQUID PAIN MEDS OR SUPOSOTORIES.THE THING IS THAT THE BILE IS SO STRONG IN OUR BILE DUCT THAT WE CAN NOT EAT OR DRINK THINGS THAT LINGER IN OUT STOMACHS.WE NEED THINGS TO PASS THROUGH QUICKLY TO NOT MAKE THAT BILE WORSE .THE BILE BUILDS UP AND THE MUSCLE SPASMS AND THATS WHAT GIVES US THE SEVERE PAIN.NOW YOU WILL STILL GET ATTACKS BUT NOT AS BAD IF YOU FOLLOW THIS IF U DO HERE ARE SOME THINGS TO HELP THEM PASS BY MORE QUICKLY.GET SOME ROOM TEMPATURE WATER AND DRINK IT VERY SLOWLY BUT KEEP DRINKING IT LIKE A FOUNTAIN.DO NOT STOP AND GO SLOW.COLD THINGS AS ICE CREAM CAN ALSO TRIGGER THE SPASMS WHICH AS WE KNOW CAUSES US OUR ATTACKS(PAIN).THIS MAY HELP.IF NOT TRY KEEPING PEPSI IN YOUR FRIDGE AT ALL TIMES AS THIS CAN HELP GREAT WITH SOME SODA CRACKERS.THIS HELPS PASS THE GAS BUBBLE AND DALUTE THE BILE TO HELP STOP THE ATTACKS.ALSO AS YOU ARE DOING THIS EVEN IF YOUR BENT OVER IN PAIN TRY TO WALK PACE OR WHATEVER KEEP MOVING TO HELP WORK OUT THAT GAS BUBBLE.IF YOU EVER NOTICE AS I DO WHEN I GET THE ATTACKS I SOMETIMES FEEL AS I MAY HAVE TO HAVE A BOWEL MOVEMENT ALMOST LIKE YOUR CONSTIPATED LIKE YOU HAVE BOWEL STUCK UP IN YOUR STOMACK AND YOU MAY HAVE THE URGE TO PUSH OR PASS GAS WHICH IS GOOD.ALSO MALAX OR ANTACIDS PERFERABLY LIQUID WILL HELP MOVE YOUR ATTACK ALONG.I ALSO HAVE OTHER DIGESTION PROBLEMS AND FROM READING THIS IS COMMON.I HV TEST SET UP TO SEE IF I HAVE IBS OR SOMETHING ELSE GO ON BUT IBS IS COMMON IN PEOPLE WITH SOD.I PROMISE THAT THIS DOES HELP.I HAVE A FRIEND THAT I JUST MET AND I ALMOST FAINTED WHEN THROGH TALKING WE DISCOVERED SHE HAS THE SAME PROBLEM SOD.ITS NOT TO COMMON TO FIND PEOPLE WITH THIS .THESE THINGS I TOLD YOU ABOUT WORK GREAT FOR HER.SHE DOESNT SEEM TO BE BOTHERED AS MUCH AS I AM WITH THE BEEF THING WHICH I DONT UNDERSTAND CAUSE THATS WHATS WORSE FOR ME.I HAVE NOT ATE BEEF IN 7 YEARS AND THAT WAS MY CHOICE OF MEAT.BUT GIVE IT A TRY FOR A COUPLE MONTHS.IT SUX BUT FOR ME IT WAS EASY CAUSE THE PAIN IS TO INTESE FOR ME TO EVER TEST N SEE IF IT WOULD OR WOULD NOT STILL CAUSE MY ATTACKS.NO WAY IN HELL WILL I TRY N FIND OUT.ALSO FOR ANYONE TALKING ABOUT THE SURGERY GOOD LUCK.MY SURGEON TOLD ME ITS NOT WORTH THE TRY ITS NOT VERY EFFECTIVE AT ALL SO I NEED TO LEARN TO LIVE WITH THIS FOR THE REST OF MY LIFE YEYYYY!!! NOT! IM SURE YOU ALL HAVE BEEN PUT ON AND ANTI SPASMATIC MEDICATION CALLED BENTYL CAUSE THIS WAS THE FIRST THING THEY TRY YOU ON.IT DID NOTHING FOR ME BUT I HEAR IT DOES WORK FOR SOME.IF THE MEDICATION BENTAYL IS SUCSESSFUL FOR YOU THEN THE SURGEY WILL MOST LIKELY WORK. FOR THOSE OF YOU WHO ARE NOT SUCESSFULL WITH THE ANTI-SPASMATIC MEDICATION THIS WILL NOT WORK FOR YOU.THIS IS EXACTLY WHAT 3 SURGEONS TOLD ME.WELL I HAVE MUCH MORE BUT ILL COME BACK TO READ THE STORIES ON HERE ITS KINDA NICE TO KNOW YOUR NOT ALONE AND THAT ITS NOT ALL IN YOUR HEAD,BUT I FEEL BAD FOR ANYONE WITH THIS AS I WILL NEVER WISH THIS ON MY WORSE ENEMY.GOOD LUCK ALL AND PLEASE PLEASE LET ME KNOW IF ANY OF THIS HAS HELPED ANY OF YOU ANY OF IT.AS I HAVE HAD TO LEARN ALL THIS OUT ON MY OWN AS NO DOCTOR HAS ANY IDEA WHAT TO DO.TOOK MANY YEARS BUT IT HAS KEPT ME OUT OF THE ER NOW FOR COUPLE YEARS.
I have been reading these comments for a couple of months now, and I’m finally writing my own. To all the women out there – has anyone heard of the sphincter of oddi flaring up during your monthly cycle? I just had a laparoscopy done because I have had severe pain under my right ribs the first few days of my period (for the past 2 1/2 years). Two trips to the ER, every test possible, and the severe pain, nausea, vomiting, and diarrhea continues. Doctors have thought it was endometriosis, but they didn’t find any during the laparoscopy. The only other test results that have provided data are: CT Scan and MRI showing dialated bile duct and blood tests with elevated amalyse. Next steps are to consider an ERCP…but, has anyone heard of hormone fluctuations causing this condition?
Thank you!!!
Hi Everyone,
Well I had my appointment yesterday with a GI Dr. at John’s Hopkins. This was the first time I have been there in a year. The Dr. was very nice and I gave him a very thick file of every Dr., surgery, test, and medicine I have taken in the last 3 and a half very painful and stressful years. He said he didn’t think I have SOD because I have had the ERCP and Sphincteromaty. Three Drs. that I have seen says the same thing, the problem has been taken care of , I have something else. So here we go again with MRI’s, test and new medicine. I am just happy he left me on my pain medicine along with Amitiza Capsules 24mcg and Pantoprazole DR 40mg. Has anyone taken these? I know Pantoprazole is like Protonex for heartburn. I go back Thursday for the MRI. I really hope he is right and he finds something easier to fix than SOD. I really hope he understands I am in pain everyday, mostly all day even with the pain meds.
Sue- EVERY attack that I had was the day before my period started. I could look on a calendar and tell you the day that I would have an attack. Every time I was in the hospital, I was having my period. I think there is a correlation between the two. Did you go to the survey link that I posted? If not, please do. I am trying to find out any connections between all of us and our symptoms.
Sue,
I also have noticed this..I mentioned this to my GI doc and he said he had never heard of that. Then I read this site and others that have the same symptoms and knew that I was not crazy and it wasn’t all in my head! I love reading the comments on this site and being able to compare things with others that suffer from this disease. I wish I could print them all out and take them to my dr and have him read them and show him that I am not imagining this! He is great..don’t get me wrong but having not experienced this for himself I think sometimes he “questions” me. I Like Mary noticed severe pain the day before my period. My dr said that hormones can do strange things. I just hope they continue to research this and find something to help those that suffer so badly. Hope everyone has a great and “painless” Memorial Day weekend. As for me..I am heading to Hawaii for some much needed sun and beach and a beach chair for two weeks!! Aloha everyone!
As an update my wife went back for her X-ray to see if the stents had passed. The main bile stent passed and the pancreas stent did not. The pancreas stent was removed the same day. 24 hours later no return of pain, no pressure, nada. So Friday night she had a few cocktails to determine if Alcohol was a trigger for her. She seemed fine!! She had a little bit of pressure the next day but probably because #1, she didn’t eat, and #2, she forgot her meds. Once she ate, the pressure went away. I thankful we found resolution to this and even though she was Type III SOD, we’re confident that she can now enjoy the quality of life. From here on out we’ll be trying to figure out what her “Triggers” are to help control this wired problem.
I had an ERCP sphincterotomy in December 2008 and I am starting to get sudden bouts of the same pain I used to have again. I am wondering if any of you who have had the procedure get attacks so quickly after the procedure? I was told that it was likely to return, but I didn’t think it would be this soon! Thanks for any replies! I am so glad I found this page!
Ashley
James,
So you wife had no other positive tests at all and has not had the gall baldder out? Liver and pancreatic enzymes all normal etc?
If so sounds like she was very lucky to get the right doc in the end. The studies show those with type 111 have positive manometry tests for SOD between 12 and 50% of the tests subjects . Of those with positive manometry that get ES only 8% get pain relief.
So you wife was fotunate and I wish her all the best for permanent and full recovery – I just hope I’m so lucky.
Given my response to erercise the latest doc think I might have compression of the Coeliac artery that cause ischemia of the small bowel. More theories more tests.
Nichole,
Your comments are intersting. Can you explain more regarding bile build up? My understanding is basically if the SO spasms bile is withheld in the GB. It’s when the SO relaxes bile is released.
When I get the attacks the diarreha is severe are bright yellow which to me indicates the presence of bile during an attack – which doesn’t make sense if it’s the SO.
I have also found that drinking water is the most helpful but my specialist dismissed that. I’d be interested to hear what you have been told in relation to theses responses and symptoms.
Just did some more research – yellow diarrhea indicates the absence of bile (but can occur in all diarrhea if food moves though the intestines quickly. This is what you expect if the sphincter closes though. I would have thought if the sphincter closes sufficiently to restrict bile – enzyme levels in the blood would also rise.
James, do you still need to look for triggers if the cause of the problem has been resolved?
Ashley who told you symptoms were likely to return. Restenosis or reclosure of the sphincter after cutting is said to be infrequent in the research I have? It possible the reoccurance was due to incomplete cutting in the initial proceedure.
Ashley,
I have had my spincter cut 3 times so I know that it can close back down. I did get 2 years of relief with very very little pain in between however so I was happy about that. Now I do have the pain back everyday but get bad “attacks” about 1 every 2 weeks so that is what I am dealing with now.
Hi… I am also suffereing from the same type of thing that everone has mentioned.
I’m also looking for a link with the three types of SOD can somone email me with a good one if you have it? dena.riley@gmail.com
Thanks
HI… I have been suffering with SOD III for 2 years after several trips to the doctors and ER. Finally a doctor in Michigan told me that I had SOD III, which means that all my blood work was coming back normal. I had an ERCP done on June 8th 2009 and my Billary Duct was 100%pressure and my Pancreatic duct was 50%, so they had to cut both ducts. Here is a month later and I have to get another ERCP done on August 11th, 2009, due to the fact I am having so much pain and constipation. The bottom line after talking to several nurses and doctors, SOD III is stil la mystery with no cure, the only cure is taking pain meds and anti-depresseds as a pain management. I was told that once I get the ERCP (by having SOD III) there was a chance that I will not respond to it very well and have a pancretitic attacke afterwards this was so true, because I was in the hospital after my ERCP for 6 days. So I have been researching for along time thorough different sources and I keep getting the same response. I have even wnet back to being a vegetarian and it does not matter what you eat I still have bad pains and restless nights. Please email me back at tanzie20022002@yahoo.com
Mary and Karen,
Thank you so much for your comments (on how the SO acts up when you have your period). Mary – I filled out your survey.
I want to thank EVERYONE for posting to this site. I’m sure I speak for everyone when I say that it is so nice to know I’m not the only one going through this. I haven’t officially been diagnosed, but since I had negative laparoscopy results last week, I now have an appointment with an ERCP specialist. I have had this condition for 2 1/2 years now, and it’s just become life altering.
For those women whose symptoms are triggered around your period, did you have a sphincterotomy? Any medications help?
Thanks so much to everyone.
Sue
Brett, I was told by the doctor that it was possible for them to close up again and I would have to have the procedure again. I did get a stent put in, but they took it out about a day later because I was having a lot of pain with it. Could that have lead to having to deal with the attacks again??
Karen, the three times you had it cut, was it always about 2 years between them? I mean it’s only been since December since my ERCP was done. They did say I had really bad blockage though….I am hoping that this isn’t going to keep acting up and that there is a way I can manage the pain because it has completely ruined my life. I haven’t been able to work in 2 years now because I am always in pain!
Sue..I have had three spincterotomies with stents being placed in on the 3rd one. I had the stents in for 3 months and I was in pain every single day! Doc wanted to pull them out but I wouldn’t let him because he told me he has never had anyone close back down again after being stented so I left them in. Ashley..I ended up in the ER 3 days after my stents were in because it was so painful and they did tests to make sure they hadn’t slipped and they were still in place so I just lived with the pain in order to keep them in. Maybe that is why you are having pain again so soon because you didn’t heal “open” with the stents in. Does that make sense? I started having bad pain again last Feb & I thought I had closed back down. Dr said I was still open from the stent placement 2 years prior so it did work on keeping the duct open. I still am in pain every day now but with the first two spincterotomies I did have 2 years in between each one with no pain. It was great! I thought well..I can do this every 2 years if it helps…but it quit working. I have most of my pain early evening around 5 to 6 pm. If you have any more questions please feel free to ask..I am so glad to help someone if I can.
For those such as myself with exercise induced pain, a friend from the Mayo clinic just put me onto a possible diagnosis. Celiac artery compression syndrome. It can give all the symptoms we get including diarrhea and it typically occurs post exercise.
A normal abdominal CT scan won’t pick this up – you need a MSCT.
Thanks for letting me know Karen! I am def. considering getting it checked again…my husband and I really are wanting to start a family, but I am now worried that I am not going to be well enough to take care of a new born when it happens. (or the pregnancy for that matter!) It’s so frustrating! (I know you all know that!) I am like you, I don’t mind the surgery as long as it gives me some kind of relief!
Brett, Her bloodwork and scans were all normal!! The galbladder numbers were SLIGHTLY higher which is why no other Dr’s considered removing it. We stumbled onto to one Dr. that said he wasn’t a “Book/Numbers” Dr. and preferred to listen to the patient. Although removal of the galbladder did not completely fix the issue, it did subside SOME of her pain. He told us that he strongly felt there were a combination of things going on and he was right. He referred us to another Dr. (The one that did the ERCP) because he didn’t have the equipment to do it himeself.
Her symptoms were that exactly of SOD and this recent Dr. strongly felt that this was the problem. He did warn us though of a 50-65 percent success rate because she was Type III SOD, but said he had a “Hunch” after cutting the sphincter that it would do the trick!!
My wife actually had/has a couple of things going on:
1) Redundant colon which causes consipation (She’s now on Miralax to correct this)
2) SOD Type III (Which has been hopefully corrected)
3) Esophagal spasms (Due to prior trama – She’s taking Amatriptaline for it)
In regards to triggers, yes, we’re still looking into them. She had a 6 pack of some wiskey drinks last Friday and seemed fine!! She hasn’t tried Caffeine yet but mentioned she was going to attempt it tomorrow.
Okay here is my long but shortened story I have yet to be diagnosed as to what’s wrong with me … however after reading all of the entries I’m confident this is what I have..
Rewind to 2002… randomly get sick for no reason at all walk half way across a room and would be down on my knees with a high fever chills extreme pain Vomiting this happened a couple of times ~ I was pregnant due in Feb of 2003
2003 – after fist child once again would randomly get sick … at times it was as quick as turning around and I would be down on my knees with a high fever chills extreme pain and Vomiting many may times this happened at least three times throughout 2003 was pregnant once again due June 2004
2004 after second child was born in June I started getting sick about every couple of months this first time was about 4-5 weeks after the birth of my youngest child… same thing would happen.. I went to the emergency room and they thought I had an infection from the c-section, that wasn’t so .. I would sometimes go to the emergency room but had no results.
2005 – Had many many episodes of randomly getting violently sick for what to me was no reason at all.. again all lasting about 2-2/12 hrs in intense pain and vomiting high fever
2006 – again having many many episodes of randomly getting violently sick for what to me was no reason at all.. again all lasting about 2-2/12 hrs in intense pain and vomiting high fever finally in Oct or Nov after many trips to my Dr and to the ER with no results had a episode at work a co-worker diagnosed me… went to ER told them what was happening and told them my co-worker though it might be gallstones and once again they didn’t believe me, but they once again took blood which turned out normal like all the other times but because I got a dr that actually would listen to me she sent me to have a ultra sound which showed gallstones…. WOW at least I knew what was wrong now
2007 – in April had another bad attack on Saturday in the US (I’m from Canada) once I got home had another attack on Tuesday had extremely high liver and pancreas counts and was put on an emergency list for the operation…. Had the operation was was suppose to feel better but never did…. Continued to go to my Dr.. and to the ER whenever I felt like I was having another gallbladder attack (which I was now missing) all that year all I wanted to do was sleep all day and all night, I was in constant pain, had no energy and once again it took almost 6 months for my dr to start to do anything about it.. may X-Rays, MRI’s and blood work still no answer..
2008 Ended up with very bad bronchitis in march of 2008, was taking my mangosteen juice along with the Tylenol 3 with codeine the day I started the Tylenol 3 I ended up thinking I was going to die so my next door neighbor came over after I called them, they ended up taking me to the ER told them what was happening and said it felt like a gallbladder attack but I didn’t have it any more and if it had grown back I would not have been surprised, also told them about the Tylenol 3 OHH they said that’s what it is It’s the codeine and that has that affect on everyone… I still wasn’t convinced. It was just like the pain I had when I was having an attack.. they gave me some something to come the effect of the codeine and after 2 hrs in the ER waiting room with no relief they gave me some more… Okay I was going to be sick so they took blood work, finally got to see the DR and he said the same thing it’s the codeine go home.. so I went home… That night the ER DR called me back in … my blood work that HE DIDN”T BOTHER TO LOOK AT was dangerously high I was in hospital for 1 week on IV only during that time I had an emergency ERCP done where they stretched and cut something the bile duct I believe .. felt GREAT NO PAIN.. hair grew, actually had to shave my legs every day instead of every two weeks fingernails grew they didn’t peel, crack or break I was able to stay up past 1130 didn’t have to go to bed at 6pm every night and still get up early. I HAD NO PAIN anywhere in my body at ALL first time in YEARS…. I felt GRRRREEAT….
Then disaster struck… at the end of August I started to feel a little off.. started to get a little pain, not bad at first started to get more tired the 1130 nights turned into 11, 1030-10-930-9-830-8 by December I was once again having a hard time staying up past 9pm.. also went to DR 6 times between September and December I don’t feel good something wrong….. he didn’t belive me once again blood work, X-Rays this time CAT Scan he thought I might have Liver Cancer
Fast forward to present year 2009 – still feel mighty bad all this year then May 18 I had another attack not the double over pain but it’s not moved up to a 4 from a 0… Since Monday I have been extremely tired I did a search on “Gallbladder removed still have pain” and came across this site.. read it over it’s ME… This is what I have .. Now I just have to take it to my DR
Please help. I have been to the emergency room (2 separate) in 3 days and can’t even get anyone to pay attention to me. After being told in April that I needed to see a behavior therapist by my G.I. who performed the sphinterotomy that did not work, I have been trying to find someone else. In the meantime, as so often happens, I have had another extreme attack. For the first time, i have pain on both sides, instead of just on the left. It is unbelievable.
Unfortunately, when I tell the ER people what is wrong with me, they choose to do nothing except run bloodwork and come back and send me home. They pump me full of opiates, which makes it worse, and tell me to see a GI dr.
I can’t believe how hard it is to even find anyone who can appreciate the pain I am in, help with anything, etc.
I don’t know what to do because I am in so much pain. I don’t want to eat, drink, etc. They ask me how many people in my family suffer from depression, etc and then send me packing with no help at all.
I will go anywhere ( I live in Denver) to get help. The one dr. who does supposedly specialize in this in Denver requires a referral even if insurance does not. Then, he requires a fax of your records (of which he receives about 100 separate requests weekly) and will review and decide if he will take on your case. I don’t like those odds. I need to get some control back in my life. I have great insurance and any guidance from you all would be appreciated.
THank you so much!
For the lady who lives in Denver and needs help…….There is a Dr. Sharp in Steamboat Springs who does the sphincter clipping and the other tests. He is the one who did mine. It has not resolved the whole problem and I am going back……..but it did help. Actually, Dr. Sharp goes all over the Western Slope of Colorado.
Sandra – You can try the Dr. we went to if you like. You should contact the “Hennepin County Medical Center” in Minneapolis, Minnesota and request the GI department. You’ll want to speak with Dr. Kinney. You’ll probably need a referral from your Dr. but this guy knows his stuff!
Good luck!
Sandra,
If you want to go to someone else that is great is the GI dept at Virginia Mason Hospital in Seattle, wa. The dr there is John Brandabur and he is the guy that my GI doc sends me too when he needs specialized stuff that he can’t do.(mannometry, liver biopsy, etc.) I have heard that he has patients fly from all over the US to see him. He is world renowned I have heard. I liked him because he talked laymen terms to my husband and I. You would probably need a referral from your doc but you probably will wherever you go. I can get his number for you if you like. There is no reason you should have to suffer like this.
I went to John’s Hopkins today for a MRI. I know nothing will show up. I should be happy if it doesn’t but at lease if it does maybe the Dr. will do something to help me. I also have to give a stool sample, oh great.
Sorry, I have a little rant I need to get out, and I am sure most of you will understand my frustration!!
My insurance is such a pain in the butt! My husband is in the military and they section off regions of the US for the insurance.(West, South, East) Where we are stationed now (Wichita, KS) is called Triwest, but I am home visiting my family right now in (Louisiana) the Trisouth region. I really wanted to get in to see a doc. down here (reason is below), but to do that would require a LOAD of paper work, sending it to the insurance company, waiting on them to approve the change, getting an appointment with a new primary care doc. and hoping they would send me to a gastro doc that knew what SOD is and how to treat it properly since it is still so controversal, then having to do it all over again once I got back up to the base we are at!
So now I am in Louisiana with my family having pain every day and 2 major attack so far and there is nothing I can do but go to the ER when it gets really bad (to just get relief) until I head back up to the base we live at since I can’t see a GI specialist in the southern region without switching over to Trisouth for a referral. My husband is on a short deployment in Cali. so I would have no one back in Kansas to take care of me if I did have the ERCP done again, until around June 5th when my husband SHOULD return….(there is always a chance he stays in Cali. longer).
I basically don’t even know what to do with myself anymore. SOD is basically ruining my life.. I hate being a burden on my family, I know they don’t look at it that way, but it’s hard for me not to when my father is suffering from stage 4 cirrohsis (sp?) and my mom has been sick her entire life, and has to now take care of my dad 24/7 and me while I am home visiting.
Doctors always think I am faking it or addicted to pain killers b/c I have depression and anxiety, but what 22 year old with a pacemaker, immune deficiency, history of kidney stones, no gall bladder, no appendix, no tonsils, and everything else I have been through at such a young age NOT be depressed??! It bugs me so badly when they write me off as a “faker” or “dramatic”….why would I want to spend my time in the ER while I am home visiting my family that I rarely get to see!? Do you think I like being poked in my terribly small veins that much?!? I THINK NOT! Do you think I like sitting in a waiting room in pain for hours on end?? I THINK NOT! Do you think I like drinking contrasts, taking xrays and CAT scans that are probably ruining my chances of starting a family one day??? I THINK NOT!! UGH! Get a clue docs…I mean I understand there are people out there who abuse the drugs, but I am obviously not one of them when I have all of those diagnosis and a diagnosis of SOD which causes the severe pain!
Well, that was my little rant, because I am just so fed up with the way things are going in life….I need a miracle just like the rest of you! I just want to be pain free for more than 5 months….is that too much to ask for??
It’s me again, still looking to hear from anyone who has been treated at the Borland-Groover Clinic in Jacksonville, FL. I live in GA. and Jacksonville is the nearest place to me that can do manometry and who will accept my insurance.
My first choice is to see Dr. Sherman or Dr. Lehman in Indiana. They are trying to get certified to accept my insurance,but my understanding is that it can take a year before that happens. I am in too much pain to wait the year, so I think I will go to the Borland-Groover Clinic. I was just hoping that someone here had some info on which Dr. there to see and some input on their exprience. Thanks.
I have suffered with SOD for more than 15 years. I have had ERCP with sphincterotomies and stents 3 times. The last time I was in the hospital 3 times, after each procedure for pancreatitis. I still am having problems. I am about to lose my job due to missing too much work for appointments and sick days. I also suffer from Asthma, GERD and TMJ(which cause me severe headaches and ear pain), Depression and Anxiety.
My question is- Does anyone receive disability benifits for having a SOD diagnosis?
At my current job I can sit if I have to and work at my own pace. I know if I lose this job I will have a hard time finding one that I will be able to handle when I am in pain or nauseaus, which happens often. I do have tramadol for pain but that doesn’t always work and I also take Nifedipine to stop the spasms, but that does not always work either. Both make me really tired. I also have something for the nausea, which also makes me tired. So I try to avoid taking these at work.
Thanks for any information you are able to give me regarding receiving disability benifits.
JAMES
Thanks for everthing you’ve posted James. I juste went back to my specialist and he pretty much burst my balloon. He said it was almost certainly SOD type 111 but there was nothing he would do for it. In Australia they only have manometry testing in Adelade (I live in Brisbane now) and he only does surgery on those with elevated enzyme levels – 0r if the patient begs. (and he’s only done 4)
He tells me the rate of pancreatitis is 1:4 and it’s a real crap shoot. Then he says the reason they fail is the cut is incomplete and the surgeon doesn’t do it properly. I tell he there’s a guy in the USA doing 400 a year with a rate as low as 4% and he just says well that’s in selected patients.
So it looks like nobody here is going to do ES on a type 111 patient – you wife’s results give me real hope.
I could travel to Adilade and try to find a good doc but I think I’ll investigate what I need to do to see McKinney. I’ve had every test now and rule out basically everything else.
I can’t live with this pain much longer – I’m sorry I let my green card expire but there must be some way I can pull this off. I’m sure as hell not letting some guy with no confidence whose only done 4 take a stab at it.
Brett, hang in there bro (along with the rest of you). I don’t blame you though, I wouldn’t risk it either if his stats looked like that. I firmly believe that it’s ABOSOLUTELY critical that IF you do go through with an ERCP and cut either of the ducts that you get it done by somebody that knows what they’re doing.
So far my wife has figured out that Caffeine is a definate trigger. What’s wierd is that coffee will cause an attack that can last all day whereas Soda does not? Maybe the strength levels are higher?? After she tried coffee and got an attack, it lasted all day. I could see her in pain and slip back into that “quiet” place where she was before trying to hide her pain. I was REALLY scared that the pain would not go away but the next morning she felt 100% fine!! I still ask her daily; “What’s your pain level….0,1,2,3,4″ and she always says ZERO!! Coffee from here on out will be decaf, it’s not something we can risk.
She also found out that if she don’t eat regularly, that plays a factor as well.
Hi,
I am 28 years old and have had SOD for 3 years now. I have had all of the normal operations (gall bladder removed, ERCP, stent, and the long complicated one Transduodenal sphincteroplasty and Transampullary septectomy!)and meds, but nothing worked. The doctors have just done a nerve blocker using Botox at the top of my stomach. The procedure has worked and for the first time in 3 years I am almost completely pain free and only taking Paracetamol! I would recomend for everyone to try it. I does not work for everyone and the time that it last for varries – anything from 3 months to 12 months. You just need to go back in when the pain returns for the nerve blocker to be repeated, it needs to be done using endoscopy but there is not the normal risks of pancreatitis as they only need to go as far as the top of the stomach. I would def recomend talking to your doctor about it – they are not solving the problem, but to be honest at the moment I don’t care, getting rid of the constant pain is all that I could think about.
If your doctor does not want to do this, then some drugs that I have found usefull in the past are Gabopentin – this is a drug used for epilepsy but there is evidence it helps with pain control. Amitriptyline – this is used as an anti-depressant but again studies have showen it is beneficial in pain control. Buscopan – anti-spasmodic.
Alternative medicine is supposed to help – I was very warry of this idea, but accupuncture is amazing and I would strongly recomend it. It is great for helping to control the pain, I found it reduced the lethargy and nausea. If you are having a crap day, they can put some needles in varrious places in your head (I know that it sounds painfull/scary but it is not at all. If the needle is uncomfortable then it has not been placed in the correct place) which makes you so happy and chilled, it is amazing. Also if you struggle sleeping then after a accupuncture session you will been in a nice drowsy sleep for the rest of the day. It is just great!!
Tests that I have had done to help diagnose the condition aswell as bloods and routine scans are NARDI test, and HIDA scan.
I hope that this information is helpfull to some-one. Please try to keep as positive as you can, only 3 weeks ago I was feeling like the pain would never go away and was really struggling to stay positive. But now, I am of all my meds and trying to re-build my life. I know you end up feeling a little bit like a guinea pig, but when they find the correct drugs/procedure it will all be worth it, I promise
Nicky – since the sphincteroplasty removes the SO and the block was to the top of your stomach, what you most likely have/had was achalasia see wikipedia herehttp://en.wikipedia.org/wiki/Achalasia. The esophageal sphincter – not the SO goes into spasm and is treated well with botox, though they also cut the sphincter here as well. The botox may wear off in 6 to 12 month so you may need the procedure done again or they may opt to cut it. From what I can tell, it seems to be considerably easier than dealing with the SO and it sounds unfortunate that you had the open sphincteroplasty when this may have been the primary problem?
The HIDA scan (or biliary scintography) is only effective in diagnosing type 1 and 11 SOD. I’m scared of doing it as they say it can cause severe pain – as they deliberately stimulate gall bladder contraction and nausea often results.
I asked my specialist about botox and he doesn’t like it. He feels pancreatitus occurs due to irritation of the ampula and an injection is worse than a clean cut. (The data I have so far doesn’t support this and says the pancreatitus occurs from increased hydrostatic pressure from manometry in the duct, and reflux – if they only cut the SO though how does this effect the pancreatic duct?)
Thanks for the encouragement James. Being in the medical area I have learned a primary reason for treatment failure is typically the physician’s inexperience . Caffine is a big trigger – even tea effects me now (interesting anything ending in ine seems to be a problem – caffine – morphine – codine.) The specialists just told me hydration status signficantly effects the SO. I’ve started drinking more water and the symptoms have greatly improved. By avoiding exercise and drinking more water I’ve gotten more improvement than any meds so far.
I’m having a hydrogen breath test to rule out bacterial overgrowth and fecal calprotectin for Chrone’s as a last resort. Your wife’s experience now makes me wonder about all those reports that say type 3 SOD isn’t real and it’s really duodenal hyperalgesia – and that ES is only effective in 8% of cases. I’m beginning to suspect it’s poor technique and incomplete cutting that’s the real problem.
Hello All,
Sorry it’s been awhile since I’ve written, it’s been a difficult few weeks.
Brett, I definitely agree with your last post, especially the part about inexperience. I did go back to the specialists (the ones that did the ES) however, they are now telling me that they don’t think SOD was my issue, since the ES should have fixed my issue if it was SOD. I tend not to agree with this. I even went as far as to ask them if they should cut more, but now they won’t even consider it. I did find out from my records that since this hospital was a teaching hospital that the specialist probably just watched my procedure and the procedure was actually done by the fellow. I’m not happy with that at all. They did go back and look at previous medical records I brought in (which they had before I had the ES) that a previous CT show bowel wall thickening. They now want a CT scan with contrast, they did some blood work (they say that I’m anemic and each time I’ve been to the hospital in the last year my white blood cell count has been high-none of this was said while I was hospitalized) and then a possible camera pill test (where they check your small intestines). I have a feeling that if all these test come back with nothing (like my MRI I had last week that still shows nothing) that they will “send me on my way”. They did say that it could be possible IBS, however I have family members who have that and their symptoms are totally different than mine or that I’m too stressed or that it could be “all in my head”. I’ve been very upset since that visit and am unsure what my next steps will be, so I definitely know how you all feel when you say that you are frustrated!!!!
Becca, there’s increasing evidence that the SO is not the primary source of the problem in many type11 and most type 111 sufferers and this may explain your onging symptoms despite successful ES.
There’s a whole host of things that go wrong but typically it’s part of a generalised motility disorder of the small bowel that may occur independently to or in concert with SOD. Unfortunately there doesn’t appear to be much we can do about it and the medical intervention at this stage doesn’t have a great track record. Here’s a bit from just one article on the subject but if you look up intestinal dysmotility and SO you’ll get hundreds. I’m beginning to agree with my specialist in that surgical intervention in type 3 is not a good idea.
Patients with chronic epigastric to right upper quadrant pain are often considered to have gallbladder or sphincter of Oddi dysfunction, but standard tests are nondiagnostic. In 62 consecutive patients with this compliant undergoing antroduodenal manometry, we correlated a change on duodenal motility with spasm of the ampulla of Vater/duodenal wall. This distinctive motility pattern occurred and was analyzed in 35% of patients. It is characterized by increased duodenal wall tone with phasic contractions of 19-22 or 41-44 contractions/min or by phasic activity alone. The subjects with spasm also underwent cholecystokinin cholescintigraphy, and 50% showed either significantly delayed gallbladder emptying of hilum to small intestine emptying, or both. The disorder appears to be secondary to a loss of neural inhibitory control and a dysfunctional small-bowel pacemaker. Antroduodenal manometry is an essential diagnostic procedure that complements sphincter of Oddi manometry in evaluation of unexplained right upper quadrant pain.
For those of you that had the sphincterectomy (with relief) and then it came back….how did it progress? Did you just get another attack one day? Was it gradual? Did you have twinges and then a huge attack? What was your experience?
Mary, I had the sphincterectomy and had relief for a very short while. I can’t remember how long, I would have to go back in my files. I just know how it happened that day. I went to lunch with family. I had something light and my son got clam strips and fries. He didn’t eat all his clam strips so I finished them. Not long after I got home I started having pain again. I had to lie down an stretch out, almost like I was in labor. That’s when my then, GI Dr. put me on Elavil. I don’t why it happened like this. I have had pain everyday since, some days, little pain, some days a lot of pain.
My Doc has recommended MRCP as a possible subsitiute fror ERCP.
I see in the data they use secretin to stimulate gall bladder contraction. Has anybody here had an MRCP and did any pain result from the test?
My wife had the MRCP done prior to the ERCP and didn’t get any relief. In fact it might’ve caused a flare-up. Everybody is different though as this entire page reflects that. What didn’t work for her, might work for you. The MRCP is not as invasive and COULD alleviate some of your pain.
I just had a ercp and my sphincter of oddi cut on May 28,2009., GMC sent me to Temple. Stayed in temple hosptial in philadelphia for the night. Returned home to Bloomsburg on the 29th. Got up the 30th and thought I was going again to die from the pain in my upper right side. Got to GMC bp 199/98 Tried to explain to the docs that shincter was cut due to oddi disfunction. Had such pain that my arms and legs difigured by cramping up and i could not move them. I was screaming for help! They finally drugged me. Thank God because that pain is horrible. They drugged me so much that I can’t remember alot of sunday at all. Still in pain today. The only thing that the cut to the sphincter did so far was to keep liver enzimes to normal when this attack occurs. I am giving it at least 6 weeks to give this proceedure a chance to heal and work. I dealt with this pain and attacks now for 2 1/2 years, so I feel I need to give the proceedure a chance to work. Being hopeful that soon I will get some relief .
Hi,
Words cannot express my relief and frustration upon finding this great site! I’m a friend of a woman whose pain is I think Oddi problems. She was on Prevacid which we just found out can increase gallstones, but I think it’s Oddi problems, and or it’s along with gallstones.
Her attacks are terrible to watch. Nausea, bent over, sweating from the pain. Her only relief is to sit in a tub of the hottest water possible.
She has breathing issues and is on O2, so the pain makes her even shorter of breathe.
Like I said she was on Prevacid 2 years & didn’t go off till SHE asked her primary why she was on a medicine tied to gallbladder issues when she already had (hidden) gallstones.
Does anyone else here have constipation issues tied to attacks?
She too had a colonoscopy recently that provoked, I think, 4 attacks in a single night.
She goes for an untrsound Tuesday morning (June 2) and an endoscope 4 days later. I want to ask the gastro guy if it could be Oddi problems.
One more thing: since childhood my friend has had trouble eating sweets, they made her nauseous, even as a kid. Could this be a sign she was born with Oddi problems??
THANK YOU!!!!
Lauren R.
Nicky, I must apologise for the bad call on the botox injection. I’m not a GI doc so this isn’t my specialty and when you said top of the stomach I automatically went for the oesophageal / cardiac sphincter (ask me about a bad backs and I might do better).
I did some more reading and where they probably injected the botox was not the oesophagus (which is at the top of your stomach) but rather the pryloric sphincter at the bottom of you stomach – but the top of your small intestine and duodeneum. Your symptoms just don’t fit achalasia but they do fit gastroparesis which is delayed stomach emptying and can cause all the symptoms you note.
The botox relaxes the pyloric sphincter under the stomach and allows the stomach to empty more quickly into the duodeneum and small intestine.
The cause is typically damage to the vagus nerve from a variety of causes but can be ideopathic. Sounds like they hit on the right diagnosis if the botox worked.
For the rest of us this is another possible diagnosis that needs to be ruled out. If you’ve had your gall bladder out and are female, then SOD is likely, if not the list so far is now: gastroparesis, SIBO (bacterial overgrowth) Crohn’s, duodenal ulcer, celiac artery compression, ductal stones and more with the list growing with more reserach. You can think zebras not horses if the tests for horses are very risky – or the likely hood of horses is actually low.
So far if you have SOD 111 as a diagnosis the chance of actually having it is under 50% so rule out everything else before even considering ERCP and ES. From what I can tell botox injection is a very accurate predictor of success for ES – better than manometry with a lower risk of pancreatitus. So my specialist can go to (*&$%^$ and I’ll find somebody who will do the botox as a diagnostic test.
Where did the rest of the replies go to?
Nevermind……browser issue.
Lauren, we believe that the SOD was ONE issue tied to a couple of different underlying symptoms that caused her pain. Constipation has ALWAYS been a problem for my wife. She is not taking Miralax daily and is FINALLY regular. I suggest you inform her to start with that and give it time to adjust to the dosages. My wife was SO bad that she took one bottle and nothing moved for ONE week!! The key is to stay consistant with it though, and determine what intake works for her body. I think my wife takes 1.5 /day and drinks plenty of water!
Brett,
I’m new to writing in but have been reading all of your responses for the past month or so. I’ve lost 45 pounds total since 12/07 and have lost a good part of those pounds since last 9/08, about 30 pounds. This was done as an elimination diet and have cut out things that I’m afraid might cause the extreme pain. (like ground flax seeds – about 1 teaspoon worth).
Back in October 2005 I had my first episode of pain that came a day later after drinking alcohol, spicy food and a new brand of decaf coffee. The pain was just below the xyphoid process, mid epigastric area, radiating to the back. Pain went away a day or two later. No elevated liver or pancreatic enzymes. I did see my GP 4 days later who diagnosed me as having possible Peptic Ulcer disease, doubt Biliary Colic or Pancreatits.
Two months later while on our way to Hawaii, on the plane I had 3 glasses of wine to calm my nerves, so the next day I ended up with this pain in ruq and also just below the xyphoid process, radiating to the back. This was in 12/05. ( I have generalized anxiety and have never taken any anxiety medication. I’m a very nervous person. And would use alcohol to calm my nerves.
While we were in Hawaii, I met a lady there and told her about my pain and she thought it was my gall bladder. So she referred me to her doctor back in the mainland for a second opinion. So I saw him and he ordered an ultrasound and an UGI and found nothing. Ultrasound was done 1/06 I told him I was concerned that something might be wrong with my gallbladder. I saw him off and on during 2006 for continual right flank pains which they couldn’t figure out. I was concerned that it was related to the kidneys and/or the liver. I also had alot of fatigue during this time. In 8/06 I had an episode of transient high blood pressure with palpitations with extreme thirst. The day that had happened I had 4-5 glasses of white wine and was working in the yard on a hot day and had taken some homeopathic meds that morning, didn’t drink alot of water or eat much that day. Anyway I ended up in the ER that night with those symptoms listed above. I had my heart evaluated by a cardiologist and everything turned out pretty normal. I had been diagnosed in my 30’s with Mitral Valve Prolapse that was 18 years ago and am now 51 years old.
In 4/07 I came down with a severe eye infection where half of my face swelled up. Never before in my life have a had this type of problem. The eye doctor couldn’t tell me if it was viral or bacterial. He didn’t even take a specimen which upset me.
After 4/07 my doctor changed the structure of his practice . I had to leave his practice and was referred to a doctor that was recommended by them which later I decided to change to 12/07.
I saw the new doctor from 7/07 to 11/07 and during that time I complained of not feeling well, tired, flu-like symptoms, pain under R. breast. Pain RUQ associated with eating.
At the end of 11/07, I started seeing the new GP, told her about my health concerns. (Low adrenal, diabetes, congested liver, anxiety, fatigue, difficulty thinking, aches and pains) I weighed 171 pounds at that time.
In 12/07, I had another episode where I had this terrible mid epigastic pain and pain referring to the back after eating fatty, spicy foods and drank 1 glass of red wine. I made an appointment with the new doctor for a complete physical with Labs and mentioned this to her.
1/08, She did a Lab review with me revealing my Liver enzymes were high. AST 99, ALT 220. Never before were they like this. So I had to have my liver enzymes checked monthly for the next 3 months. I thought there was something wrong with my liver so I went on The Liver Cleansing Diet by Dr. Sandra Cabot, which helped getting the liver enzymes down to normal over a 3 month period. I abstained from alcohol, thinking I had cirrhosis of the Liver, and for the first month ate only foods with fish and vegetables, the 2nd month had foods with chicken and fish, and the 3rd month foods with only vegetables. I did lose 5 pounds between 12/07 and June /08. I went back on my normal diet in 6/08 and the liver enzymes started going up again. In April 08 I did have a half a glass of wine on my birthday and another half glass the next day and started having the midepigastric pain again. Why?? No one could tell me!
I had an unusual burning pain at the end of of urination and increased frequency and urgency to urinate in 6/08 with sharp R. flank pains. I was concerned I had a bladder infection but was negative on the test.
In 7/08, I was experiencing dizziness, nausea, and pain right after eating home made chicken soft tacos. I wasn’t sure if I had food poisoning or not.
The abdomen pains continued, midepigastric area, for a month, and I told my GP something is wrong, so finally she referred me to a Gastroenterologist in 9/08. It took from 12/07 to 9/08 for her to refer me to a GI doctor!!! I also wanted to mention in 9/08, before seeing the GI doctor, I had strange arm and leg weakness, couldn’t walk in the am, got better around 3 pm, also had this sharp stabbing left leg pain (thigh) shooting to the ankle, had to go to the ER, I had something similiar 2 years ago, doctors not sure what it was.
The GI doctor did the usual tests Colonoscopy, Endoscopy and found nothing. This took place between 9/08 to 11/08. He mentioned something about IBS and remember having IBS back in 1991 when I was going through a divorce. He told me there was nothing more for him to do so he was going to release me and I said I was still having the pain so he referred me to a liver specialist because I had a history of elevated liver enzymes. I forgot to mention the day after meeting the GI doctor for the first time he ordered an abdominal ultrasound and the tech said she thought she saw something on the tip of the pancreas. So later that day I had an abdominal cat scan which made me very sick the day after. They thought I had a pancreatic tumor which ended up being a loop of bowel overlapping the pancreas. How traumatic? The next day we were leaving on a road trip for 2 weeks to Colorado.
So 11/08 I saw the liver specialist he did his tests and found nothing. He wanted me to have monthly liver function tests. I wasn’t getting any better so my husband called this doctor and said I needed to be admitted to a hospital for further testing. All the while I have continued to work during this and I work as an xray tech in a radiology dept. I have come real close to losing my job do to excessive sick days.
Anyway 12/08, I was admitted to a hospital in SF for more testing. A HIDA scan, EUS, Ultrasound was done. Also a test for bacterial overgrowth. The HIDA scan showed my gall bladder wasn’t functioning at all. The bacterial overgrowth test showed a mild elevation in bacterial over growth. Everything else was normal. The following week I had my gall bladder removed. The surgeon’s notes mentioned there was alot of scarring and adhesions around the Gallbladder. The gallbladder had been inflammed. Which would explain why I felt like I had a low grade fever, flu like symptoms and had elevated Sed rates over the past 4 years and not to mention the RUQ pains. The pathology reported there had been some stones inside in the past but none were present then.
I was relieved to have the gall bladder out and looking forward to no more pain but the pain continued after surgery.
From 12/13/08 to now I have eaten only beans, rice and vegetables. I currently am holding my weight at 130 pounds, I have weekly IV nutrition for necessary vitamins. I forgot to mention I think 3-4 years ago I started noticing the inability to take vitamins. Why? Does anyone know? Can’t break them down properly??
After my GB surgery I was referred to a GI/motility specialist but due to excessive emails/calls to his office he has written me saying he does not want to see me anymore! Wow what a shock! This was in March 09. Feb 27 2009, I had a second HIDA scan to see if I had SOD, my score was 4 out of 5. So I was told I didn’t have SOD. A week later I put a half a teaspoon of ground flax seeds on my hot rice cereal in the am, another half a teaspoon a vegi burrito, cut the burrito in half, ate one half at 1200 noon and the other half at 300 pm, by 4pm I was with a patient, started to feel sweaty and couldn’t catch my breath, it felt like someone had knocked the air out of my stomach, the pain was so intense. It lasted for 3 minutes then went away then came back an hour later and lasted for 3 minutes then came back 45 minutes later lasted for 3 minutes again and then came back 10 minutes later. I drove myself to the ER 15 minutes away. They did labs, ekg, and Ultrasound. Ultrasound didn’t reveal any dilated duct or stones, but the labs showed elevated liver enzymes and alkaline phosphatase and LDH (ast 146, alt 70, alkph 141) The pain finally went away a half hour later. Not fun at all!! After this episode I faxed the lab results to my primary care physician and the liver doctor, the liver doctor spoke with the GI motility specialist and decided I did have SOD after telling me earlier that nothing was wrong with me. They told me to go see this surgeon that does the ERCP with sphincterotomy back in early March 09. I have yet to do surgery. My liver enzymes continue to be slightly elevated only because of what I’m eating. I’m concerned about my limited diet. Not sure if doing the surgery will help my situation. Through a referral and for a different perspective, I found a functional medicine doctor who discovered that I have a parasite, Blastocystis hominis. What she is doing is trying to find out what is causing the problem and doesn’t want me to cut the sphincter. I’m not sure if I can wait any longer for her solutions. I’m very weak and can barely function some days at work. This functional medicine doctor wants me to take this specific systemic antibiotic but I’m concerned that I will have pain when I take it. And with antibiotics once you start them you have to finish. She did extensive labs on my blood, stool and urine. She found the parasite which I have many and I don’t know how this can effect the sphincter of oddi also I have dysbiosis in my intestinal tract (the bacterial flora is off) I was low in Vit D, B6, Folate, Magnesium and certain antioxidants. Probably due to poor digestion of my foods.
Sometimes I get this burning pain in the mid epigastric area after eating. Remember I’m only eating beans, rice and vegetables. No fats or oils. I’m nervous about getting the severe pain I had back in 2/09. I don’t take any pain meds.
Anyway I’m looking for solutions before cutting the sphincter. I did consult with doctor Harsha Vittal in San Jose. Thanks to Mary S. blog. I would like to know more about the relationship between IBS and the mind and gut. Perhaps that’s where the answer lies. If the severe pain we get comes from the sphincter not opening properly especially after eating fatty foods, then why is that? What has caused it to not function properly? Are the nerves in the gut not firing properly due to overfiring? I’m curious how many of us have had a constant emotional, traumatic, stressful life before this SOD happened? Have any of you had any severe infections in your body like cytomegalovirus, herpes? Any anxiety disorders? Depression? Any alcohol dependancies? Just curious!
There’s a specialist that deals with IBS and its relationship with SOD at UCLA in the Los Angeles, CA area that I’m considering seeing before I have my sphincter cut. His name is Emran Meyer. It’s difficult to get in to see him so I hope I don’t have to wait too long.
Do any of you have any solutions other than cutting the sphincter that work for this problem? Do you think that if I was able to relax more that the sphincter might relax?
Sorry for writing so much but I wanted you all to know my history and hopefully I could help someone with their symptoms.
Warmly,
Marjorie
Whew! Marjorie you’ve been through a lot. The problme with SOD is if you don’t have elevated enzyme levels diagnosis is very hard. There are docs who don’t even think sod type 111 is a real condition – or it’s a incidential finding in a whole host of motility disorders.
Seems to me the bacterial overgrowth is a feature of the motility disorder (I’m getting a hydrogen breath test next myself for SIBO). 50% of folks with IBS have bacterial overgrowth so it may be a case or a side effect.
It’s interesting you mention the thirst. I get a very dry mouth with bad breath I can’t control with hourly brushing during flares – but I assumed that was the medication I take to control it.
It seems to me to be very hard to nail down the source of the pain and symptoms aren’t a reliable indicator in our case . If you’re type 111 and have the manometry testing, and it is positive (it may only be positive during attacks so it’s sporadic) you risk panceratitus from the test alone and less than 50% of those with positive manometry testing get relief from ES – only 8% with negative manometry testing.
In your case with the elevated enzymes ,manometry isn’t typically necessary as the diagnosis is fairly certain. Assuming they have ruled out stones with the HIDA scan. (Incidentally the HIDA scan is not a very specific test for SOD of any type but it’s better for detecting type 1 and 2) Manometry and Botox injection are the only proven effective tests.
Since you have elevated enzymes, I think an ES is your best option and I’d follow your Doc advice – fully blocked ducts can lead to pancreatitus as well.
SOD can often be part of an overall motility problem – especially in type 111, and IBS is common. There’s various therories but some hold the inhibitory neural complex is damaged so hormonal and neural signals don’t shut gut small bowl and SO contractions down. The SO is supposed to relax with colysticokinin release on signals from the duodeneum, but in SOD it can contract. You clearly had a gallbladder motility problem with low ejection fraction but removal of the gall baldder can make SO worse by severing the nerves in the gall duct.
There’s also duodenal and visceral hyperalgesia where the pain fibers in the small intestine become hypersensitive to stretch and distention.
It’s a diagnositic nightmare really. One test that very sensitive, simple to perform and very specific to SO dysfunction is a botox injection. There seems to be minimal side effects. If it works, great you have your diagnosis and can then go on to get the SO cut if necessary. If not then it’s something else and you haven’t sliced your SO and risked pancreatitus to find out. In your case though elevated enzyme leves do point to type 11 SOD at least – with other complications.
In the last 3 days my symptoms have miraculously dropped 80% and I’m almost back to pre endoscope levels. I’ve started drinking more water and taking Lyrica but I can’t really pin down a reason. If it keeps up I may not push further – every invasive tests just seem to flare it up so and it took 2 months to recover from the last test so I might just leave well enough alone.
Regarding alternatives:
One thing we always should consider in seeing any Doctor and having any test is what treatment does it lead to. Take the breath test for example. The treatment is antibiotics. The breath test is only 60% specific so it misses a lot of cases.
Some docs say you should simply try the antibiotics and see if they help.
If your not considering surgery then ECRP is pointless. Manometry testing is really unnecessay if you have elevated enzymes – type 1 and 11 and it only detects cases that might benefit from ES in 50% of people in type 111.
But medical interventions for SOD are limited at this stage and trial an error works as well as a barrage of test to then turn around an prescribe the same drug. So your choices are limited to what has been found to relax the SO – nitrate sprays, Nifidipine and anticholergenics. That’s about all available to us – other things require injection. Nifidipine made me worse, nitrate spray helps. Nifidepine comes in a acrylic shell capsules that give sustained release and I’m sure it’s the shell that flared me up. It may be possible to get non sustained release versions without the shell.
Anticholinergics may also help relax the SO and the gut – scapolamine, Hyoscamine, Atropine etc can be found in preparations like Buscopan and seasickness pills. Personally I find these useless.
To date drinking a lot of water and lying down and stretching back works better than any medication and the studies to date on medication are dissapointing.
Diet wise I have found avoiding roughage like the plague is more effective than fancy fodmaps fructse restrictions. You’ve already identified some triggers – caffine and alcohol are big ones. Watch out for codine in some pain pills, and insist on propofol as an anaesthetic if you have any proceedures – it doesn’t case SO contraction like pethidine etc.
I have had SOD now for two years, had my gallbladder out, numerous tests,two ercp’s and am still having attacks twice a week. The second sphincectomy almost killed me i had a massive bleed 9 units of blood and two procedures later the bleeding stopped. I would not recommend this to anyone as it is a very dangerous procedure and does not fix the problem. I am now on colovac and this seems to ease the pain a little, i also try not to eat fatty foods as i find this triggers an attack.
Natalie,
Good advice recarding ERCP and ES. There is a blood vessle in the SO but a good physician should know how to avoid cutting it and there are specific positions recommended to do this. Not all docs who can do ES are well trained. It’s a very tricky operation that requires perfect technique.
Given your symptoms and response to medication, IBS with duodenal hyperalgesia seems a more reasonable diagnosis and unfortunately you are in the ranks of the 50% plus folks who get no benefit from ES (if type 111).
What needs to be done more frequently is specific tests to see if duodenal distention reproduces symptoms. In SOD type 111 diagnosis ,95% of test subject had pain reproduction with duodenal manometry testing.
Bottom line you really need to make sure it’s the SO before you cut it. If your blood enzymes are normal. If you have diarrhea associated with attacks, pain that crosses the mid line to the left side, pain that responds to anticholenergenics/IBS meds etc I’d be extremely cautious.
Hi all, I know I’ve been a bit quiet around here, but I’m psyched that this thread is still so active. Thankfully, while I’m often uncomfortable from my SOD, it’s manageable.
I just enabled threaded comments so I hope that will make “conversations” a bit easier to follow.
See, this is a nested comment.
Just hit “reply” below the message you want to reply to.
I am new to the site but very happy to have come across it. I started having symptoms in July while being 8 months pregnant. I have since had my gall bladder removed 1/09, ERCP with sphincterotomy3/5/09, and another ERCP 3/26/09 from which I developed pancreatitis. I have pain every day and have yet to find relief. My regular doctor offered for me to have a second opinion and I found out that one of the six centers in the country that is doing research on type III is in my city. I am hoping they will give me an appointment. I will not qualify for the study due to to much pain and already having ES. My gastroenterologist has referred me to a pain specialist. Has anyone had a nerve block?
Wow Julie I am surprised that your docs did your spincterotomies only 21 days apart. Do you know what the name of the study is? I was looking into a study in my area that is going on at the hospital I had my 2nd spincterotomy done at but they said I didn’t qualify because I have had spincterotomies already with stent placement and they were more or less looking for people to see if spincterotomies help them or not. Where do you live? The study I was looking into was called the EPISOD study. Does that sound familiar? I guess after re reading your post you didn’t have a spincterotomy with the last ERCP. What did they do at the 2nd ERCP?
The first ERCP he only went into the bile duct side and did the sphincterotomy. The 2nd ERCP he went into the pancreatic side. I am not sure if he did anything, but I did end up with pancreatitis. The doctor who did my ERCP’s does not communicate very well with me (i.e. I understand what he says, it is just not meaningful.) The receptionist would not schedule me an appointment with my orginal GI doctor, so I was glad to see one of the other hospitals in Indianapolis was doing research. I am hoping they will see enough type III SOD to have some more insight. It is the EPISOD trial and I will not qualify. One way to find info on clinical trials in the US is to go to http://www.nih.gov. I typed in sphincter of oddi and found 2 trials and it lists what hospitals are participating.
Julie,
I have not had a nerve block but my dr has prescribed Gabapentin for the nerve pain and it seems to help.
Julie, the study is going to be usefull in determining how many people with SOD111 benefit from cutting the sphincter. I used to think those that didn’t benefit from ES either got the wrong sphincter cut or the surgery wasn’t performed properly.
You – and several others – are clear examples that the pain can exist independently to open sphincters and the research is certianly pointing in this direction – hence the study to adress the problem of failed ES and misdiagnosis.
The study can place you in the placebo group as well where they do sham sphinceterotomy – presumably put an endoscope tube down your mouth but nothing else – so I wouldn’t recommend it to those looking for a possible cure.
Regarding nerve blocks, botox is the only long term neural conduction blocker I am aware of. We do use lidocane and cortison injections into the spinal facette joints, but the lidocane is for diagnosis – to temporarily block the nerves to see if it’s a source of pain. The cortisone reduces inflamation if we hit the right spot.
If the pain return we then go back and do a rizhotomy where we burn off the nerve fibers.
We find the spinal facette joints to be a source of pain alone in about 50% of necks, and maybe 10 – 20% of low backs.
We also use lidocane to determine if other structures are a source of pain, by temporarily blocking the nerves. Things like rotator cuff tendonitis etc can be diagnosed this way. I’m boring you with these details to higlight just how dificult it is to determine the site of pain with modern tests.
We feel nerve blocking, local anaesthetic injection is the gold standard for diagnosis. I personally believe it’s the only effective way to tell if a structure is actually causing pain. MRIs etc show deformities but they don’t show pain – nothing does – just because a disc is worn desn’t mean it hurts and I think we have the same problem with SOD.
You can have a dysfunctional gall bladder, even stones without pain so they may be dysfunctional but not the source of your pain. To me the best test so far is to use botox on the SO and pancreatic ducts and see if it helps. If it does then great you have the source – if not you haven’t cut a sphincter that wasn’t the problem. All the other tests seem to be risky or a wast of time.
My specialist seem to think a botox injection is as bad as cutting. The research I have doesn’t back that up and I’ve only found one case of pancreatitus post injection in the literature.
All my pain refers to my right shoulder so the pain MD today injected it with steroids. At this point I am willing to try anything. They think it could be tight from gaurding or from scoliosis or both.
My personal theory is that there is still a GI problem that no one knows how to fix. It is like the SO spasms. Sometimes my BM is light colored then other times green with bile. Ultracet still after the ERCP’s makes my pain much worse instead of better.
I have started having the epigastric burning after my last ERCP. Any theories on this?
Right shoulder pain doesn’t sound like a GI problem. The body isn’t really set up this way so you GP has a point. Somatic referred pain typically referrs to structures in the same distal dermatome – but the stomach isn’t my specialty. I don’t like GPs doing bolus (big) injections of steriods into the shoulder unguided by fluroscope. If this is your first one it’s ok. I suspect he’s injected the rotator cuff and too many can weaken the tendons causing rupture. It is worthwhile doing one to rule this out as a source of your pain though. It may be possible the cervical spine, Glenohumeral joint(shoulder joint itself) and acromioclavicular joints are also possible sources.
Regarding gastroparesis it is a legitimate possibility and the symptoms do mimic SOD. Reglan has some precautions and has been banned in a few places – Erythromycin and Doperidone are also used to speed up gastric emptying with less side effects (I think). A botox injection to the pyloric sphincter so the stomach opens to the small intestine more easily is also used. I also read about gastric pacemakes being trialed.
You really want to hope it is gastroparesis – it’s far more easily treated.
Caveattes though are I don’t think it causes severe attacks and I think it’s mostly in folks with diabetes.
Apologies Juile, I just checked with a collegue and the gall bladder does commonly refer pain into the right shoulder. He didn’t know about the SO referral pattern.
So your absolutely correct. There’s a few simple tests to rule out the shoulder as a source of pain though and I hope your doc did these before proceeding with the injections?
This page has not been loading properly for me.
Sorry about that James, let me know what isn’t loading and I can try and figure it out. It’s loading fine for me.
I’ve been doing some tweaking lately.
I was having some problems with it loading also a couple of days ago but now it seems to be fine.
Thanks, Karen. That problem was an issue I had been trying to fix for years and I think I finally nailed it down.
Judi..I just wanted to say thank you for maintaining this site for all of us to share our experiences with each other. It is a great site. Thanks again!
It takes me to old comments……I have to click this link at the top to get here
“562 comments”
http://www.momathome.com/2005/10/that_dang_sphincter_of_oddi_ag/#comments
Maybe clear your browser cache?
When I load the main page for this post, I end up here.
Remember, this is a blog post that I never thought would take off like this, so it won’t quite act like a forum thread.
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