Sphincter of Oddi Dysfunction

Posted by Virginia Franzen @ginnydoll, Jul 11, 2014

I have Sphincter of Oddi Dysfuncfion. It causes severe upper abdominal pain, a lot like a gallbladder attack. I was misdiagnosed for ten years and have still had problems, pain that required medication and the ER every once in a while. The pain has suddenly gotten so much worse. I also struggle with Pseudo Tumor Cerebri which causes massive headaches. I am getting spinal taps every 5 weeks, they do not work on the headaches but we are trying to keep me from going blind from the Sphincter of Oddi.

Interested in more discussions like this? Go to the Digestive Health group.

@amber142

I have this condition. I figured out a med regimen that stops big attacks. It’s a three day long process to keep it under control but it is stopped. I do have some annoying symptoms from the meds I use after. At the initial attack I use 10mg of Reglan. It is prescribed 3 times a day so around lunch time I would take 5mg of reglan and a sublingual Levsin .125mg. I have to take the reglan and levsin together or the attack will not stop. If it’s a stubborn attack and those do not work baclophen can be added.
It’s important to take the reglan 1st you have to get the sphincter functioning again, and then move into slowing or stopping the spasm. Hyo will not fix it if it’s the first med used.
Symptoms I experience: headache, diarrhea, basically a full hangover affect for about 2 days after.
While taking the meds it’s important to drink lots of Ice cold water and continue eating even if it hurts. You have to keep the digestive juice flowing so by eating that allows the sphincter to open and allow juices to flow. When we are not eating it shuts off more. So keep the gi flow going small snacks, regular size meals, and lots of fluid. -not a Dr, just a patient who has been through hell because of this condition. I will advocate and share my regimen to help others because the Drs have NO CLUE even the good ones

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Hello @amber142 and welcome to Mayo Clinic Connect. This is a forum where patients share and receive encouragement and support in their health journies.

I appreciate the good information that you provided as to how you deal with SOD. It sounds as if you found a GI specialist who knows something about treating this disorder.

Finding a GI specialist who is familiar with SOD is amazing. It is a rare disorder and not always recognized by many GI doctors, so you were very fortunate.

Was surgery ever done to treat your SOD? I'm wondering also when the symptoms of SOD started?

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I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the last 7-8 mths. Can’t really eat anything, nausea, vomiting, intense Epigastric pain, down 20 lbs over last 2 mths. Every G.I. doctor I go to and specialist will not do the ERCP test due to no elevated liver enzymes so there’s no proof and the risk is not out Weighing the benefit. If I keep going the way I’m going there will be nothing to me within a few months I went from a size 10/12 two months ago to a size 2/4 and yet no one well perform this test I feel it is necessary. I take lorazepam due to it being a smooth muscle relax sent I am on hysocosamine as well and Norco if needed. Episodes became more frequent on a daily basis after getting my Covid vaccination I can eat very small portions throughout the day but cannot tolerate meat, greasy food a lot of food make me sick. I’m surviving off of tunafish and chicken noodle soup with some vitamin waters. I have never had elevated liver enzymes and I’ve never had the chance to get labs drawn with an episode due to being completely debilitated and almost passing out. Looking for some help and reassurance I’m not crazy!!

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@dcline78

I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the last 7-8 mths. Can’t really eat anything, nausea, vomiting, intense Epigastric pain, down 20 lbs over last 2 mths. Every G.I. doctor I go to and specialist will not do the ERCP test due to no elevated liver enzymes so there’s no proof and the risk is not out Weighing the benefit. If I keep going the way I’m going there will be nothing to me within a few months I went from a size 10/12 two months ago to a size 2/4 and yet no one well perform this test I feel it is necessary. I take lorazepam due to it being a smooth muscle relax sent I am on hysocosamine as well and Norco if needed. Episodes became more frequent on a daily basis after getting my Covid vaccination I can eat very small portions throughout the day but cannot tolerate meat, greasy food a lot of food make me sick. I’m surviving off of tunafish and chicken noodle soup with some vitamin waters. I have never had elevated liver enzymes and I’ve never had the chance to get labs drawn with an episode due to being completely debilitated and almost passing out. Looking for some help and reassurance I’m not crazy!!

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Hello @dcline78 and welcome to Mayo Clinic Connect. I am sure that you do feel frustrated that you can't get the kind of testing that you need. While SOD is known by many GI doctors, it is not a well-known disorder and can often be overlooked. Does your doctor give you any specific reasons for not following up on this diagnosis?

I'd like to direct you to another conversation about SOD. Please read the posts and ask questions or make comments to anyone there by clicking on "Reply." Most of these members also had a hard time getting a good diagnosis.
https://connect.mayoclinic.org/discussion/i-have-sphincter-of-oddi-dysfuncfion-it-causes-severe-upper-abdominal-pain/
I would like to invite @amber142 to post with you as well as @mco1989.
They have also discussed SOD.

Here is another discussion by other members who have had digestive problems after gall bladder removal.
https://connect.mayoclinic.org/discussion/post-cholesectomy-gallbladder-removal-chronic-back-pain/
Based on your symptoms as well as your weight loss, I would suggest getting a second opinion. Have you considered a second opinion with a GI doctor who knows more about SOD?

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@hopeful33250

Hello @dcline78 and welcome to Mayo Clinic Connect. I am sure that you do feel frustrated that you can't get the kind of testing that you need. While SOD is known by many GI doctors, it is not a well-known disorder and can often be overlooked. Does your doctor give you any specific reasons for not following up on this diagnosis?

I'd like to direct you to another conversation about SOD. Please read the posts and ask questions or make comments to anyone there by clicking on "Reply." Most of these members also had a hard time getting a good diagnosis.
https://connect.mayoclinic.org/discussion/i-have-sphincter-of-oddi-dysfuncfion-it-causes-severe-upper-abdominal-pain/
I would like to invite @amber142 to post with you as well as @mco1989.
They have also discussed SOD.

Here is another discussion by other members who have had digestive problems after gall bladder removal.
https://connect.mayoclinic.org/discussion/post-cholesectomy-gallbladder-removal-chronic-back-pain/
Based on your symptoms as well as your weight loss, I would suggest getting a second opinion. Have you considered a second opinion with a GI doctor who knows more about SOD?

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I will definitely check out the two conversations you have given, and thank you for that. As far as why they won’t dx me with SOD, because all the “tests” they are able to do have all come back normal. The ercp is really the only test I haven’t had, both my regular GI Dr and also the U of M GI specialist are going based off the testing. I did go see a new GI dr yesterday, and I’m being nice when I say she basically stated she isn’t going to touch me because she doesn’t want to step on U of M’s toes. Which I understand, but she was very rude about it, I was sent to her cause I had ended up in the hospital after a week of hell from a bad attack and could not see my U of M dr, not that he’d do anything idk, but my pcp wanted me to see someone local so sent me to this GI dr. This dr had rave reviews from almost everyone, but I feel like she basically shut me down every time I wanted to explain anything and just ended it right there. So now I’m wondering if I should try to get into Mayo because they may have Specialist that deal with SOD Type 3.

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@dcline78

I will definitely check out the two conversations you have given, and thank you for that. As far as why they won’t dx me with SOD, because all the “tests” they are able to do have all come back normal. The ercp is really the only test I haven’t had, both my regular GI Dr and also the U of M GI specialist are going based off the testing. I did go see a new GI dr yesterday, and I’m being nice when I say she basically stated she isn’t going to touch me because she doesn’t want to step on U of M’s toes. Which I understand, but she was very rude about it, I was sent to her cause I had ended up in the hospital after a week of hell from a bad attack and could not see my U of M dr, not that he’d do anything idk, but my pcp wanted me to see someone local so sent me to this GI dr. This dr had rave reviews from almost everyone, but I feel like she basically shut me down every time I wanted to explain anything and just ended it right there. So now I’m wondering if I should try to get into Mayo because they may have Specialist that deal with SOD Type 3.

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Hello again, @dcline78,

I am sorry to hear that your attempts at a second opinion have also been fruitless. You must feel discouraged.

As you mentioned seeing a U of M specialist I was wondering if that is the University of Michigan or another U of M? If you do live in Michigan, Cleveland Clinic (CC) has a website specifically for SOD. Here is the link, https://my.clevelandclinic.org/health/diseases/14516-sphincter-of-oddi-dysfunction. If you do live near there, you might consider a video consult, providing the doctors with copies of your records and symptoms, and perhaps they can offer you another route to a diagnosis.

Mayo Clinic has a website dealing with post-gallbladder surgery problems. Here is that link, https://www.mayoclinic.org/search/search-results?q=post-gallbladder%20problems.

Because of your weight loss problem, I hope that you find some help soon. Will you keep in touch and let me know how you are doing?

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@hopeful33250

Hello again, @dcline78,

I am sorry to hear that your attempts at a second opinion have also been fruitless. You must feel discouraged.

As you mentioned seeing a U of M specialist I was wondering if that is the University of Michigan or another U of M? If you do live in Michigan, Cleveland Clinic (CC) has a website specifically for SOD. Here is the link, https://my.clevelandclinic.org/health/diseases/14516-sphincter-of-oddi-dysfunction. If you do live near there, you might consider a video consult, providing the doctors with copies of your records and symptoms, and perhaps they can offer you another route to a diagnosis.

Mayo Clinic has a website dealing with post-gallbladder surgery problems. Here is that link, https://www.mayoclinic.org/search/search-results?q=post-gallbladder%20problems.

Because of your weight loss problem, I hope that you find some help soon. Will you keep in touch and let me know how you are doing?

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Thank you so much, u have done more in 24 hours than all the GI drs I’ve seen combine. I truly do appreciate it. Yes I do live in MI, been going to University of MI for at least 3 yrs now. He just keeps saying it’s because I’m constipated, but I haven’t had that issue at least for the last several months everything I eat comes out a few hours later if not within 12 hours. I will be sure to check out these links that you provided, again I’m so grateful that you took the time out of your day and I feel like I got more peace of mind from you than I have any of the doctors that I’ve seen so, yes I will keep you updated💜😎

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@dcline78

Thank you so much, u have done more in 24 hours than all the GI drs I’ve seen combine. I truly do appreciate it. Yes I do live in MI, been going to University of MI for at least 3 yrs now. He just keeps saying it’s because I’m constipated, but I haven’t had that issue at least for the last several months everything I eat comes out a few hours later if not within 12 hours. I will be sure to check out these links that you provided, again I’m so grateful that you took the time out of your day and I feel like I got more peace of mind from you than I have any of the doctors that I’ve seen so, yes I will keep you updated💜😎

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I'm so pleased that you have some hope now, @dcline78. I look forward to hearing from you again.

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@dcline78

I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the last 7-8 mths. Can’t really eat anything, nausea, vomiting, intense Epigastric pain, down 20 lbs over last 2 mths. Every G.I. doctor I go to and specialist will not do the ERCP test due to no elevated liver enzymes so there’s no proof and the risk is not out Weighing the benefit. If I keep going the way I’m going there will be nothing to me within a few months I went from a size 10/12 two months ago to a size 2/4 and yet no one well perform this test I feel it is necessary. I take lorazepam due to it being a smooth muscle relax sent I am on hysocosamine as well and Norco if needed. Episodes became more frequent on a daily basis after getting my Covid vaccination I can eat very small portions throughout the day but cannot tolerate meat, greasy food a lot of food make me sick. I’m surviving off of tunafish and chicken noodle soup with some vitamin waters. I have never had elevated liver enzymes and I’ve never had the chance to get labs drawn with an episode due to being completely debilitated and almost passing out. Looking for some help and reassurance I’m not crazy!!

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My stomach starts hurting reading your story! I’ve been d there and occasionally get flare ups.
Did you have MRCP?
I had 2 ERCPs after my gallbladder surgery, with widening of the opening.
Elevated LFTs was not really a criteria then. If needed, try to get a blood draw in the middle of an attack. It shouldn’t be necessary though.
With the weight loss and frequent pain it sounds like a good idea to switch doctors.

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@astaingegerdm

My stomach starts hurting reading your story! I’ve been d there and occasionally get flare ups.
Did you have MRCP?
I had 2 ERCPs after my gallbladder surgery, with widening of the opening.
Elevated LFTs was not really a criteria then. If needed, try to get a blood draw in the middle of an attack. It shouldn’t be necessary though.
With the weight loss and frequent pain it sounds like a good idea to switch doctors.

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I did have an MRCP back in the way beginning and according to them nothing really out of the normal. I had the absolute most worst attack this morning it lasted well over an hour and a half I was on the floor almost in tears with the worst pain and then I finally got sick usually after getting sick once the pain goes away this pain Didn’t go away today. I ended up getting sick a little more pain tried to start dulling off but I went to sleep, woke up and now I can’t stay off the toilet so today’s gonna be one of my bad days where I have to force myself to get up to do stuff. When I’m in the middle of an attack I am absolutely incapacitated I cannot even stand straight I was in the middle of feeding my animals this morning and they had to wait until after I was able to move somewhat to finish feeding him. The ERCP is what I have been trying to get my doctors to do on me that U Of M doc says no because I don’t have any abnormal labs and even though I’ve lost all this weight in this little amount of time I’m still considered at a healthy weight it’s very frustrating. The only thing that has been different over the last week was I was going to try and donate some plasma to get some extra money and when she checked my hematocrit within a three day 40. My hematocrit had dropped 10, down to the very bare minimum that you can have to not be abnormal, so I’m not sure if SOD dysfunction messes with your hematocrit but where did my red blood cells go why am I all of a sudden anemic? I keep trying to convince my doctor I would rather do the ERCP now because I feel I am in a healthier way now than I will be by the time labs start showing up abnormal and my weight drops below 100 and I don’t know how bad I have to get for my U Of M doctor to listen to what I’m trying to explain to him.

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@dcline78

I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the last 7-8 mths. Can’t really eat anything, nausea, vomiting, intense Epigastric pain, down 20 lbs over last 2 mths. Every G.I. doctor I go to and specialist will not do the ERCP test due to no elevated liver enzymes so there’s no proof and the risk is not out Weighing the benefit. If I keep going the way I’m going there will be nothing to me within a few months I went from a size 10/12 two months ago to a size 2/4 and yet no one well perform this test I feel it is necessary. I take lorazepam due to it being a smooth muscle relax sent I am on hysocosamine as well and Norco if needed. Episodes became more frequent on a daily basis after getting my Covid vaccination I can eat very small portions throughout the day but cannot tolerate meat, greasy food a lot of food make me sick. I’m surviving off of tunafish and chicken noodle soup with some vitamin waters. I have never had elevated liver enzymes and I’ve never had the chance to get labs drawn with an episode due to being completely debilitated and almost passing out. Looking for some help and reassurance I’m not crazy!!

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The link to Cleveland Clinic in Teresa’s post gives a good description of the problem. Note that it also covers the surgical treatment and risks.
When I first started to have problems years ago, I had an MRCP, showing “gravel” in bile duct, not real stones. ERCP followed and bile duct was cleaned out and I was fine for months. However, pain etc. returned and this time the opening was cut wider. I don’t know if it was a complete sphincterotomy.
It was fine for a long time, but if I was not careful with what I ate I would have an attack. Once I had pancreatitis which became chronic over time.
Things have settled down now, but there is still the risk of pain. It usually lasts 8 hrs.
It would be great if you could be seen at Mayo or even Cleveland Clinic.

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