1. < Digestive Health

Sphincter of Oddi Dysfunction: What helps you?

Posted by Virginia Franzen @ginnydoll, Jul 11, 2014

<p>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.</p>

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lasirvent | @lasirvent | Nov 14, 2021
In reply to @dcline78 "I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the..." + (show)
@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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You symptoms see to be similar to mine-which after a million tests, I found a doctor to treat. It’s called Mesenteric Artery Ligament Syndrome. There’s links here if you want to check.

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1 reply
dcline78 | @dcline78 | Nov 14, 2021
In reply to @lasirvent "You symptoms see to be similar to mine-which after a million tests, I found a doctor..." + (show)
@lasirvent

You symptoms see to be similar to mine-which after a million tests, I found a doctor to treat. It’s called Mesenteric Artery Ligament Syndrome. There’s links here if you want to check.

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So I read up on that MALS and a couple of questions for you actually so I had a laparoscopic exploratory procedure in 2019 because they thought due to previously having endometriosis they thought maybe there was scar tissue. Is this something that would have been visible to him at this time? The only thing that doesn’t really match up is my pain episodes don’t come after eating more than likely they come on a completely empty stomach which is why it’s early in the morning or in the middle of the night but if this is something that can be seen with a duplex I would be more than willing to have my doctor order that or bring this disorder or whatever it is up to him to see if he could do some testing on it . You said there was links posted can you post a link here for me so I can read up on it a little more, I greatly appreciate your input and help.

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lasirvent | @lasirvent | Nov 15, 2021
In reply to @dcline78 "I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the..." + (show)
@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!!

Jump to this post

You can connect to the Facebook Mals Awareness page and they have lots of information. The test to check is a CT scan with picture on inhale and exhale. Also, a Doppler ultrasound. check the celiac plexus when breathing. Very few doctors know what to look for.

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jordi2002 | @jordi2002 | Jan 24, 2022
In reply to @amber142 "I have this condition. I figured out a med regimen that stops big attacks. It’s a..." + (show)
@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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I am glad this works for you! But not everyone can afford that type of treatment and some institutions in some states do not offer it at all! I will be 20 next month, I have had SOD for 6 years, since I got my last round of the Gardisil/HPV vaccines. These have ruined my life in many ways and I can no longer function. All Dr's in Oklahoma just tell me to go out of state for help since they are not willing to do the ERCP. They don't even believe I have it because I have type III. I was misdiagnosed for having IBS and none of those medications worked. I've been on many medications for the issue. All the ones on the SOD list either didn't work for me or are just now starting to wear off because my SOD is worsening. I've tried the medical/medince route and its not working, they suggest pain management when studies have shown pain medications make the symptoms worse. They of course also said it was stress and started talking about the mental aspects of it. While those can affect SOD it is not the ONLY cause and effect trigger for SOD and it won't just magically go away with mumbo jumbo pretend the pains not there meditation therapy. I've dropped 20 pounds in 2 months and can hardly eat or drink. The first time when all this started I was 90 pounds. I want to know why Drs are not educated with this issue because I hear about many girls in my age range having this all the time! Why is this not a bigger issue to Drs!? People who vomit almost weekly and cannot eat or drink, they get malnurished and dehydrated but they still brush you off because you are too of complex case. IJUST WANT/NEED HELP!!!

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1 reply
kr88005 | @kr88005 | Apr 6, 2022

My daughter got really sick 11 years ago while pregnant. So they removed her gallbladder while pregnant due to 3 to 5 emergency room visits a week. Now to this day she has extreme pain in abdomen back and has problems using bathroom. I ran across the sphincter of oddi here and now more than ever I think this may be her problem. She's at the emergency room as I'm typing this. She has such bad pain and is down under 100 pounds and she's 45. She throws up acid so strong it leaves burns in and on her mouth. She's had several colonoscopies and the one down her throat. Still no answers. Is there anywhere I can take her for diagnosis? We live in New Mexico and healthcare here if you go to hospital they think you are on drugs. Her doctor even prescribed her lidocaine and malox to make GI cocktail at home. I'm scared she will die before anyone can help her. 11 years of extreme pain and vomiting she tells me often she wants to die. Help please. She can't work because she never knows when she will have an attack. They last for a day to a week and that's if she can get a emergency room doctor to help her. Today I called ambulance at 5 pm. She just called to tell me they stuck her in a wheelchair and pushed her to waiting room. I just called at 11:50pm and talked to a hospital administrator and hopefully they will do something to help with her pain

REPLY
2 replies
Amanda Burnett | @amandaa | Apr 6, 2022
In reply to @kr88005 "My daughter got really sick 11 years ago while pregnant. So they removed her gallbladder while..." + (show)
@kr88005

My daughter got really sick 11 years ago while pregnant. So they removed her gallbladder while pregnant due to 3 to 5 emergency room visits a week. Now to this day she has extreme pain in abdomen back and has problems using bathroom. I ran across the sphincter of oddi here and now more than ever I think this may be her problem. She's at the emergency room as I'm typing this. She has such bad pain and is down under 100 pounds and she's 45. She throws up acid so strong it leaves burns in and on her mouth. She's had several colonoscopies and the one down her throat. Still no answers. Is there anywhere I can take her for diagnosis? We live in New Mexico and healthcare here if you go to hospital they think you are on drugs. Her doctor even prescribed her lidocaine and malox to make GI cocktail at home. I'm scared she will die before anyone can help her. 11 years of extreme pain and vomiting she tells me often she wants to die. Help please. She can't work because she never knows when she will have an attack. They last for a day to a week and that's if she can get a emergency room doctor to help her. Today I called ambulance at 5 pm. She just called to tell me they stuck her in a wheelchair and pushed her to waiting room. I just called at 11:50pm and talked to a hospital administrator and hopefully they will do something to help with her pain

Jump to this post

Hi @kr88005 and welcome to Connect. I am so sorry to hear about your daughter and the terrible pain and vomiting that she has been experiencing. My goodness, 11 years is an awful long time to be going through that! Have you considered taking her to Mayo Clinic? Mayo Clinic is located in Minnesota, Arizona, and Florida. I think the closest to you would be Arizona. Here is the page that has all the information. https://www.mayoclinic.org/patient-visitor-guide.

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acadian50 | @acadian50 | Sep 6, 2022

Good Day All,

In 2017 I was climbing a ladder for work the ladder was at an angle and approx 12 feet off the cement floor. I climbed to the top and I was about 15 feet. The ladder footing slipped and the ladder and myself came falling down. I landed in the prone position on the ladder. Thankfully I did not seriously injure anything immediately. What started shortly after is what brought me here.

I started to develop pain on my mid right abdomen. I then started to notice spasms in that area. It has been progressively slowly gotten worse.

The thing is I have weird symptoms that I can't seem to find anyone else who has had them. I still get the spasms about 20 minutes after eating something with high fat. The odd symptoms are some very strange sinus issues. It's almost like a turbinating is constantly producing mucus and when I breath it's like a bubble that bursts.

I wouldn't think this is related, but it gets worse when my SOD attack gets worse.

I can no long lay on my sides, I get this weird sensation like something is wrong. I can't describe this feeling, it's like a malaise I've never had before in my life.
My eyes burn and they feel sort of itchy.
When I have bad attacks, my stool is very watery.
I was put on strong muscle relaxers for my back. I have been taking very very high doses and I noticed that this is the only thing that is helping my SOD. If I stop taking it, or reduce the amount, I can barely sleep and I wake up feeling like I'm literally dying.

Sometimes I feel like I'm going crazy.

I'm talking to a gastroenterologist today, but I don't want to mention the odd symptoms, just the pain

Thanks for listening

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 6, 2022
In reply to @acadian50 "Good Day All, In 2017 I was climbing a ladder for work the ladder was at..." + (show)
@acadian50

Good Day All,

In 2017 I was climbing a ladder for work the ladder was at an angle and approx 12 feet off the cement floor. I climbed to the top and I was about 15 feet. The ladder footing slipped and the ladder and myself came falling down. I landed in the prone position on the ladder. Thankfully I did not seriously injure anything immediately. What started shortly after is what brought me here.

I started to develop pain on my mid right abdomen. I then started to notice spasms in that area. It has been progressively slowly gotten worse.

The thing is I have weird symptoms that I can't seem to find anyone else who has had them. I still get the spasms about 20 minutes after eating something with high fat. The odd symptoms are some very strange sinus issues. It's almost like a turbinating is constantly producing mucus and when I breath it's like a bubble that bursts.

I wouldn't think this is related, but it gets worse when my SOD attack gets worse.

I can no long lay on my sides, I get this weird sensation like something is wrong. I can't describe this feeling, it's like a malaise I've never had before in my life.
My eyes burn and they feel sort of itchy.
When I have bad attacks, my stool is very watery.
I was put on strong muscle relaxers for my back. I have been taking very very high doses and I noticed that this is the only thing that is helping my SOD. If I stop taking it, or reduce the amount, I can barely sleep and I wake up feeling like I'm literally dying.

Sometimes I feel like I'm going crazy.

I'm talking to a gastroenterologist today, but I don't want to mention the odd symptoms, just the pain

Thanks for listening

Jump to this post

Welcome @acadian50,

You may have noticed that I moved your message to an existing discussion about sphincter of Oddi dysfunction (SOD) here:
- Sphincter of Oddi Dysfunction: https://connect.mayoclinic.org/discussion/i-have-sphincter-of-oddi-dysfuncfion-it-causes-severe-upper-abdominal-pain/

I did this so you can connect with other members like @musicflowers4u @dcline78 @astaingegerdm @kr88005 @hopeful33250 and others.

I hope you were able to meet with a gastroenterologist today. Did you get some answers and help with the pain?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 7, 2022
In reply to @acadian50 "Good Day All, In 2017 I was climbing a ladder for work the ladder was at..." + (show)
@acadian50

Good Day All,

In 2017 I was climbing a ladder for work the ladder was at an angle and approx 12 feet off the cement floor. I climbed to the top and I was about 15 feet. The ladder footing slipped and the ladder and myself came falling down. I landed in the prone position on the ladder. Thankfully I did not seriously injure anything immediately. What started shortly after is what brought me here.

I started to develop pain on my mid right abdomen. I then started to notice spasms in that area. It has been progressively slowly gotten worse.

The thing is I have weird symptoms that I can't seem to find anyone else who has had them. I still get the spasms about 20 minutes after eating something with high fat. The odd symptoms are some very strange sinus issues. It's almost like a turbinating is constantly producing mucus and when I breath it's like a bubble that bursts.

I wouldn't think this is related, but it gets worse when my SOD attack gets worse.

I can no long lay on my sides, I get this weird sensation like something is wrong. I can't describe this feeling, it's like a malaise I've never had before in my life.
My eyes burn and they feel sort of itchy.
When I have bad attacks, my stool is very watery.
I was put on strong muscle relaxers for my back. I have been taking very very high doses and I noticed that this is the only thing that is helping my SOD. If I stop taking it, or reduce the amount, I can barely sleep and I wake up feeling like I'm literally dying.

Sometimes I feel like I'm going crazy.

I'm talking to a gastroenterologist today, but I don't want to mention the odd symptoms, just the pain

Thanks for listening

Jump to this post

Hello @acadian50

I would like to join Colleen, @colleenyoung, in welcoming you to Connect. I'm really sorry to hear about your serious fall from the ladder. From your post, I'm assuming you were not taken to the ER for any evaluation after the fall. Is that correct?

It is important to review that fall with a doctor and to see about any possible injuries that might have occurred. Often, internal injuries are not immediately noticeable but do exist and carry with them serious consequences.

Have you discussed with a doctor, the fall and all of the odd symptoms that have come about since then? If not, please do so as soon as you can.

REPLY
acadian50 | @acadian50 | Sep 8, 2022

Good Day Teresa,

I was taken to emergency for an evaluation, and thankfully there was no severe injuries.

I spoke with the gastroenterologist and he was very dismissive that whatever the issue was is related to the fall.

He also didn't believe that it was Sphincter of Odi dysfunction which is his own words "I've only seen it once in my career". So as you can see it's going to be an uphill battle to get this diagnosed.

I'm fairly convinced it's SOD because I can feel it spasm within 20 minutes after eating anything that is high in fat.. e.g. drinking coffee with like 18% creme, eating cheese, or fast food.

He is sending me for a HIDA scan which I guess will rule out Gallbladder and Pancreas disfunction.

I'm not sure if a HIDA scan will reveal anything for SOD though.

Thanks for replying.

Kenny

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