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Sphincter of Oddi Dysfunction: What helps you?
Digestive Health | Last Active: Jun 18 1:04am | Replies (35)Comment receiving replies
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!!
Replies to "I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the..."
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.
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.
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.
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.
You are not crazy!!!! I ended up having an ERCP about 7 years ago. There are 3 types of this… to me you would be considered Type 3 like me. I have had labs drawn during and after attacks… that’s what I call them. Nothing is EVER elevated!!! After 7 years… all my symptoms are coming back and I had one of the worst attacks and like you wanted to go to the ER but could not get myself there. I feel your pain… hence the reason I ended up joining this group!
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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?