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Sphincter of Oddi dysfunction and figuring out if i have it

ok so i have been going to a doctor for over 6 months and they couldn't find anything but i was having massive pain in my right lower quadrant constantly and it would never go away and then on a whim my gastro doc sent me to have a hida scan and from that i don't think i have ever felt pain that bad in my entire life and then a week later i passed out at my place and split my head open then the next day i had my gall bladder removed and it was flowing at 17% then after that about 2 weeks after my pain medication wore off my symptoms came back even harder pretty much the same pain as my gall bladder but much much worse and now i have really really really dark green stools all the time and before they would come once in awhile and i went to see a gastro at an advanced medicine place and he thinks i have ibs but the meds he gave me cholestyramine and nortriptyin and those are not working except making my stools look normal but i still have the massive pain in my upper right abbs

what i am i to do or think about this? should i go through with the pressure test? does the risk overway the possible problems from the pressure test?
19 Responses
Avatar universal
by the way i have lost 10 lbs since my gall bladder was removed
Avatar universal
I wonder if you are referring to an ERCP as the pressure test?  If so, there are numerous things you can and should try before undergoing this evasive and risky procedure.
First and foremost, get to a good doctor asap. There are areas of the nation that specialize in SOD and diseases of the pancreas - where do you live, are you in the US?  The best places to go for SOD include Univ of Minnesota, Indiana University, Med Center at Univ of North Carolina...there might be more but those centers I know have the docs who know, treat, and have studied SOD for many many years.
I also have SOD, and have had it for nearly 3 years now.  Unfortunately, more times than not, even reputable GI's don't know what to do with an SOD patient.

You need to have your doc prescribe a blood test (if he/she hasn't already) to measure the liver levels and pancreatic enzymes in your blood - this can tell you a lot w/o undergoing any procedures.  If your panc enzymes come back elevated, there is a good indication that you have SOD.  There are three types of SOD - two of them will show elevated levels and one does not (type III) and is dx'ed only officially by ERCP but can be likely based on symptoms alone.

Also, there are meds you can try to use to reduce the pain and relax that SO muscle.  Levbid is a smooth muscle relaxer and Elavil is an antidepressant which is a very old drug but used these days in pain management as it numbs the nerve endings in your body, resulting in a higher pain tolerance for the patient.

PLEASE do not have an ERCP without considering all other options first.  The risk of developing any level of pancreatitis following ERCP is great (60% was what my doc told me), and that ranges anything from an acute attack to chronic which people suffer through life with.

I don't know a lot about much, but I do know a lot about SOD.  I am more than happy to offer any knowledge I have of doctors, meds, treatments, etc to help you.  SOD can be a long road, so please educate yourself as much as possible.  Read, read, read and do research on the internet about centers and doctors who are versed in SOD.  You are best off to find a doc who has performed thousands and thousands of ERCPs and be your own advocate for this...with something as rare as SOD, many docs don't believe it exists and don't know and are learning along with you even though you may not realize it.

Good luck!  Please keep us posted.
Avatar universal
I know how you feel...I am going through the same thing.  I don't know if I should go through with the ERCP b/c of the risks.  I had my gallbladder out over a year ago and my upper abdominal pain came back, but with different sensation.  Doctors do not know what is wrong with me.  I did find one doctor, a surgeon that finally listened to me and gave me 5 options before even considering surgery.  Right now he game me a muscle relaxor (donnatal) that seems to help when the pain gets worse, but I shouldn't have to put up with this.  He too does not know what is wrong...and the next step wouldbe ERCP.  I have not seen him since Oct., but why would I go back if right now I am able to function in the community unlike last year?  I am frustrated...I know there is something wrong with me and it's not do to depression.  
Avatar universal
if by ercp you meen do the cutting thing to the sphincter then yes thats what i am referring to. i have been going to doctors for the last 6 months and it took 3 to figure out my gall bladder was flowing at 17% and i had it removed. i live in rantoul illinois and my primary doctor works at christie clinic here in rantoul and my gastro is in the champaign office and the gastro here referred me to and advanced medicine place in st. Louis mo called Washington university to a doctor johnnalogotta and he seems to think that i have ibs and is treating me as such but at the same time i have symptoms for both ibs and sod the catch is my liver and pancreas enzymes are normal so he put me on the 2 meds and they have had no effect the other catch is that my gastro here in champaign said i had sod and had to send me to st. louis to have that pressure test so now i'm stuck feeling like **** i lost my job and getting up in the morning just flat out hurts.
Avatar universal
my gastro in st louis also told me that the risk of ercp is very high and that he wants to treat me for ibs for 2 months and see if that helps if not then he will do the ercp is what he said but i believe he will try the muscle relaxer first before doing the ercp cause like ohiogirl said the risk of inflammation of the pancreas is about 60% and if i dont have the elevated liver or pancreas tests there is about a 20% chance that the ercp will help me and if my liver and pancreas enzymes were high there is about 70-80% chance that the ercp will help me. when i went to see him i was a little pissed of cause i had been seeing docs for 6 months and 1 doc told me i was flat out faking all of my symptoms to get pain pills so when i had my hida scan i called his nurse and had his nurse tell him what i had so the ****** would shut up.
Avatar universal
If I were you, I would definitely get a 2nd opinion before going in for an ERCP.  Very few docs can do one successfully, and including manamotry which makes it necessary to find out if they do have to score that SO muscle.

Can you get to Indinapolis?  Indiana University specializes in diseases of the Pancreas and SOD.  Dr. Lehman is known nationally as well as Dr. Sherman for the number of ERCPs that they do there.  It is the #1 center in the nation for SOD care; They are basically the top of the line as far as this speciality goes and if you can get there, I would not hesitate.  You said you are in Illinois, mabye it's not too far.  I drove 3 hours to get there, and woudl have driven even longer for sure.

Here are my feelings about IBS; take it or leave it.  I believe that docs use that as a blanket term, and you may be experiencing IBS, I think it's very real, however there is something going wrong that is causing the IBS.  It's a very broad term/diagnosis, and I really hate when docs try to use that one for SOD.  That tells me that he is not experienced with patients experiencing SOD.  The surgeon who removed my gall bladder told me that "no one" gets SOD as it's very rare.  Well, that jerk didn't want to refer me to a GI, my OBGYN ended up doing that for me as she was so concerned.  Long story short, I got lucky and I saw a GI who did know what SOD is, and woudln't touch me with a 10 ft. pole.  He sent me straight to IU to see Stuart Sherman; the best in the biz.  

Do a search on Stuart Sherman or Glen Lehman.  They have both been published in the New England Journal of Medicine and they numerous other articles out there with great information about SOD, ERCP, Manometry and all of the risks that come along with it.

Please do not let your doc talk you into an ERCP until you are fully aware of the risks.  When I went to IU to consult with Dr. Sherman, he was very direct and 'in my face' and asked me if I was absolutely at my wit's end and the end of my rope and could not live with this another minute.  When he told me there were other things to try, I went for the meds option and I have been living for almost 3 years now with SOD extremely tolerably.

I hope I'm not scaring you, but I have heard of and met way too many people online who fall into the wrong hands with this dx.  It's easy to do as "GI" is already a speciality so people assume they are in the care of a doc who knows waht is going on, but this is rare, and truly requires a specialty beyond the broad spectrum of Gastroenterology.
Avatar universal
i'm 16yrs old and i had my gallbladder removed in 2007. i had terrible pain before the cholesystectomy and after, the pain was excactly the same. over the years though, it has gotten to be so bad that i'm homebound and can't do much of anything. i have the same exact symptoms ur having. i had the hida scan done and my gallbladder was flowing at 0%. i did not have gallstones. i had something called biliary dyskenisia. i have the dark green stools and all the other symptoms u mentioned too. the only thing different is that my pain is in the upper right and it goes right through my back.
What ever u do, i suggest getting a test called an mrcp done first. this test is an mri that specifically looks for stones or dilated bile ducts associated with SOD or bile duct obstruction. There's also another test that's like an mrcp and a hida scan put together. this test is an mri but they inject u with something and watch to see if that stuff comes out of the sphincter. i would recommend getting these done first because of the serious risk of pancreatitits with the ercp. I'm actually getting the mrcp with the injection later this week. I hope i was helpful!!! :)

oh, and there is a doctor that is internationally known for his work with ercp's. his name is patrick okuello (not sure on the spelling) my doctor from hopkins contacted him and set me up with the mrcp's. it might be worthwile to see if u can get a hold of him.
Avatar universal
what is a manamotry? I am about 30 minutes from the indiana border so it would probly take me about 2 hours to get there but heres the problem my insurance requires a referral to go see a specialist of any kind. you had a bad experience with a doc and so did i and i think the doctor saw ibs and thats what he wanted to see and didn't even take my green stools into consideration at all i said some things to him also that points to ibs but thats all he listened to like  all he wanted to do was to get me out of the door and not deal with me at all before that doc said ibs i had my gall bladder surgon and my gi in town here saying i had a blockage in my duct so needless to say i got a little snappy with my doc in st louis cause i want to be able to get on with my life and stop feeling like complete ****. btw your not scaring me at all you are actually helping me out a lot and i am extremely greatful for you input and concern it actually makes me feel better that i am not the only one going through this bull ****
Avatar universal
i'm sorry i was a little mad when i wrote my symptoms and yes i do have the upper right abdominal pain that goes straight through to my back and it drains all of my energy and nothing seems to help me do daily stuff except pain medication which i don't want to be on my whole life. thank you for that referral on the doc i will look into it cause i think the doc i have is trying to blow smoke up my assssss
Avatar universal
Yep...if your doc did not tell you or does not know what manometry is, get the heck out of there and quick.  Ask him for a referral, as your PCP, ask your OB...ask anyone who will get you to good care.  
Manometry is a processes/tool used to measure the pressure of your SOD which helps the doc determine if and how much to score your SO muscle.  In my humble opinion, having an ERCP for SOD is useless unless the doc can and is well versed in manometry.

Run, do not walk, to IU if you can get there.  Call your insurance company and ask them what it will take for you to get there or call the IU office and ask them what you need to do to get there.  They are very helpful and the office lady is very nice and if they can, they will help you.  The office number is 317-274-0925.  There are a few docs there, I'd get into Lehman or Sherman if you can.

Like I mentioned in an earlier comment.  It's not necessarily that your local GI is bad, but many docs don't know about SOD b/c they almost have to have a speciality within a speciality of already having a GI speciality.  UNFORTUNATELY, we are so desperate for help when going through something like this that people tend to listen to any doc who claims they can help when we really don't know that they don't know all there is to know about SOD.  You think that since you are at a GI, you shoudl be in good hands.  Luckily, I landed in the office of  GI who sent me straight to IU.

You are your own advocate.  Do lots of research online - Stuart Sherman (from IU) is published, there are so many articles on line you can read to educate yourself and even if you see your local GI again, you can be armed with questions for him and he'll know that you are not going to take his blanket dx lying down!
Avatar universal
How have you been doing?  Any updates?
Avatar universal
Hi I'm not sure where you are in this process but let me tell you what I know. I've had URQ pain for 10 year. I had every test done & they all came back normal. I was sent to a surgeon & he said before he removes it I need to my bile ducts check first. I went to a GI doc & had an ERCP done. I was told about risks but I couldn't stand the pain. I was told both of my bile ducts were closed. They cut them open & placed a stent in for about a week. I was pain free for about 1 year the second time I had to get the same thing done agian. This time I was not so lucky. I came down with pancreatitis & was hospitalized for 7 days. This time I was good for 2 years. The last one was done in 07.I was lucky enough not to get pancretitis but had a hard time recovering. Now in 09 I have to have another one done. I'm to the point I can't eat anything. I'm nausea 24 hours a day lost 40 lbs in 3 1/2 weeks. I guess I'm saying an ERCP was benifcial for me BUT PLEASE MAKE SURE YOU HAVE A GOOD EXPERINCED DOCTOR PERFOM THE ERCP. It can be very dangerous if not done the right way. You may also find docs that are going to tell you that you have IBS. Remember you know your body better than ANYONE else.  Please keep us posted. I hope your feeling better.  
Avatar universal
that's what my doctor's are trying to do. now i go to johns hopkins and my gi there said that most of the stuff that my other 2 GIs were saying wasn't true.
i'm going to have the ercp done soon, probably sometime in october.
Avatar universal
oh yeah i know all about the ibs general diagnosis and thats whats happening to me so i will get my doc to do the ercp
Avatar universal
Good luck & please keep us posted. If it turns out to be SOD I know of a wonderful support group. They help me a ton!
Avatar universal
i go see my gastro today in st louis i also have a symptom update i am getting really really sharp pains where my pancreas is my back is killing me and my stools are really fatty also when i eat a little while later i start hurting really really bad
Avatar universal
i am about to have an ercp with menometry
Avatar universal
Hey Im reading these post..You are in St, Louis? I am close by. I had my gall bladder out in Nov because it stopped functioning. I started hurting bad in Feb. RUQ and back..piercing pain. Thought I had a hernia cuz I also have a bulge around right upper rib cage. Finally went to my family Dr. in June. He recommended me to a Gastro Dr. I went to one in St. Louis(my choice) He did a EGD. He has recommended a Dr. that specializes in muscles and bile duct area to R/O SOD. I see him next week. I read up on him and hes very credible. Everyones right, the DR. has to be a GOOD one and specializes in it and KNOWS what hes looking for and doing. Im pretty sure thats what I have, but my pain is so bad that the meds they gave me do not help. Let me know who your seeing???? Thanks
Avatar universal
I had the gastric bypass and afterwards experienced the same pain, it is crippling. I almost pass out. It feels like a heart attack. It starts with a burning sensation in the pit of my stomach and radiates to my back and shoulder. My face gets hot and flushed. It is unbearable. I have been put on Librax x4 daily and actigall x2 daily and nexium. I am like a new person. I do have rare episodes but they are mild in comparison. I cannot take any morphine, codeine or any narcotics in that family. I did take a cough medicine with codeine and the spasms lasted 2 hours. This is a good indication that Sphincter of Oddi Dysfunction if the problem. My Dr. does not want to try surgery b/c of my bypass surgery,. He said it was damn near impossible. Also the risks are high for complications. Hope this helps. I do not take Librax but 2x daily and still am ok.  
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