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.

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Can they do anything to treat the pain of SOD?
what kind of medication ? and does it help with the eating pain ?

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@suerc

Does any one have this and how are they being treated ? My daughter has this and she cant eat anything. she has lost so much weight.

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I would like to invite @lauriefrancis and @claudiabrende back to this topic to share their thoughts on sphincter of Oddi disease. I moved this discussion to the Digestive Health group as this dysfunction is related to digestive juices in the intestinal tract. @suerc, this must be hard to handle as a parent watching a child have a hard time with this diagnosis. If you don't mind me asking, what has been suggested by the provider who has diagnosed it?

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@JustinMcClanahan

I would like to invite @lauriefrancis and @claudiabrende back to this topic to share their thoughts on sphincter of Oddi disease. I moved this discussion to the Digestive Health group as this dysfunction is related to digestive juices in the intestinal tract. @suerc, this must be hard to handle as a parent watching a child have a hard time with this diagnosis. If you don't mind me asking, what has been suggested by the provider who has diagnosed it?

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nothing yet they are just trying diffent meds. Its so hard to get into the gastric Dr..

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Does any one have this and how are they being treated ? My daughter has this and she cant eat anything. she has lost so much weight.

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Hello @suerc,
I merged your discussion about finding others with sphincter of Oddi dysfuncfion (SOD) with this one, so that you could reconnect with the members who are in this discussion.

There are two types of sphincter of Oddi dysfunction – one occurs when the digestive juices back up in the bile ducts in the liver, causing “biliary dysfunction.” The other occurs in the pancreas, which causes inflammation called “pancreatitis.”
Although this paper was published in 2007, it is a great resource to learn more about this rare condition: – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096116/

Treatment depends on the type of SOD a person has and the severity of their symptoms. Here’s a more recent published study about treatment for SOD:
– Cost Effective Therapy for Sphincter of Oddi Dysfunction https://www.cghjournal.org/article/S1542-3565(17)30822-4/fulltext

@suerc, may I ask if you could share a few more details? What symptoms does your daughter have? Do you know whether the SOD is related to biliary dysfunction or pancreatitis? How is she coping?

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@kanaazpereira

Hello @suerc,
I merged your discussion about finding others with sphincter of Oddi dysfuncfion (SOD) with this one, so that you could reconnect with the members who are in this discussion.

There are two types of sphincter of Oddi dysfunction – one occurs when the digestive juices back up in the bile ducts in the liver, causing “biliary dysfunction.” The other occurs in the pancreas, which causes inflammation called “pancreatitis.”
Although this paper was published in 2007, it is a great resource to learn more about this rare condition: – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096116/

Treatment depends on the type of SOD a person has and the severity of their symptoms. Here’s a more recent published study about treatment for SOD:
– Cost Effective Therapy for Sphincter of Oddi Dysfunction https://www.cghjournal.org/article/S1542-3565(17)30822-4/fulltext

@suerc, may I ask if you could share a few more details? What symptoms does your daughter have? Do you know whether the SOD is related to biliary dysfunction or pancreatitis? How is she coping?

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She has gone thru most of these tests. She feels just like she still has her gallbladder. She has lost 30 lbs since September. She assoc eating with pain.

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@suerc

She has gone thru most of these tests. She feels just like she still has her gallbladder. She has lost 30 lbs since September. She assoc eating with pain.

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I have been in the same boat. I lost a ton of weight before having my ERCP which I have had done twice. I have episodes where it acts up. I stay away from alcohol because that's a huge trigger for an episode. I live on spaghetti o's when I get pain with eating. I have noticed my symptoms get worse when my weight goes up so I try to stay below a certain weight. I've been dealing with this for over 8 years. I have periods where I feel great and have no issues and then there will be times all I can do is lay in bed on my right side and not move.

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I have had an issue since I had my gallbladder out, 30 years ago. Have had every test, except a test done for SOD. This includes MRI, catscan, ultrasound, X-rays. I will have to find a specialist to visit. The pain, during an episode is an 11. Just like the gallbladder pain, under the right rib, extends to the back, up to my lower jaw. I have been prescibed bentyl, carafate 3 to 4 times a day. My gastro Dr gave up and sent me to a surgeon. The surgeon gave me the bentyl and carafate and sent me back to the gastro Dr. This does / did help, and I will stop taking it when I feel better. Probable shouldn’t . Maybe 6 months will go by, and then an attack occurs. I don’t get bloated but I do have an rx from a PA to have the ER or Dr test my blood for a hepatic panel to include amylese and lipase with an MRI/MRCP at the time. We know no ER is going to do an MRI/MRCP. The PA gave me an rx for hyoscamine .125 mg. Works a little. When I get the pain, I extend my stomach out as far as I can-really extend it. And do this standing up. In fact standing helps. Then I get very thick milkshakes and keep my stomach feeling full. And chocolate milk, the thick kind like FairLife. I am so sorry we all are going through this. The gastro Dr told me I should find another Dr.

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I appreciate this post. I get frequent pain in liver area below right rib. Don’t recall any specialist mentioning SOD. I have an enlarged fatty liver and gall bladder removed about 40 years ago. Thanks for something I can ask a doctor about.

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@suerc

nothing yet they are just trying diffent meds. Its so hard to get into the gastric Dr..

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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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