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AIBU?

To ask has anyone got/heard of spinchter of oddi dysfunction?

58 replies

medicallycomplex · 19/05/2017 19:10

After years of pain post gallbladder removal I've finally been diagnosed with it after an Mrcp scan.
Googled it but all seems to be American sites, my gastroenterologist said he's rarely met a patient with it :/

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StillDrivingMeBonkers · 19/05/2017 19:12

my gastroenterologist said he's rarely met a patient with it

but you can guarantee they all post here Grin

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MrsMozart · 19/05/2017 19:13

Yes. A close friend. She's not on here, but if you have any questions I can ask her for you.

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CricketRuntAndRashers · 19/05/2017 19:14

No.

But I hope this diagnosis means that you can do something against the pain?

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medicallycomplex · 19/05/2017 19:15

I've an appt with a surgeon on Thursday to discuss an operation as I've been medicated for years but apparently has loads of cons so just wondering is it worth it?

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CesareBorgiasUnicornMask · 19/05/2017 19:16

I have it since gallbladder removal but mercifully only triggered by opiates. Thought I was dying the first time I popped some codeine after a trip to the dentist. Am due to see an anaesthetist soon as I'm due DS2 in a few weeks and want to know if I can have pethidine etc but am planning on going armed with printouts. What is being done about yours, OP?

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medicallycomplex · 19/05/2017 19:16

@StillDrivingMeBonkers I thought I'd check Wink I also have lupus and know a few on here have it but the area I'm from not many do (think rural Wales!)

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CesareBorgiasUnicornMask · 19/05/2017 19:17

Ah crosspost- unfortunately I don't know anything about treatment options as as I say mine seems to have a specific and avoidable trigger. I'm sure the surgeon will have the best info about outcomes Flowers.

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medicallycomplex · 19/05/2017 19:20

Thank you for the replies :)
After years of being thought a hypochondriac and multiple hospital admissions with no answers (apart from abnormal bloods) it's nice to know it's something but it's not that "known"

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Hulder · 19/05/2017 19:28

Yes, me! I've got it.

I thought it was basically made up in the textbooks - am a doctor and it's in ALL the textbooks and they obsess over it and you never ever see it. And now I've bloody got it.

Haven't had the tests as can't be arsed but with CesareBorgia mine is only triggered by opioids. Exactly the same pain as I had before my gallbladder was removed fucking awful 30 minutes after taking codeine.

Cesare if you are going to have an op, then there is research on which opioids constrict the sphincter of Oddi the least. Pethidine is a no no - and is rarely used as an analgesic outside of labour anyway. Your best option is oxycodone. Codeine and morphine are essentially the same - if you are triggered by codeine you will be triggered by morphine as as codeine is metabolized to morphine.

I had to look this all up once as in real life I am a palliative care doc and was trying to give pain relief to someone with pancreatitis - her treating doc was insisting I couldn't give her opioids as the pain could be sphincter of Oddi dysfunction it so was not so I blinded him with science by finding papers about how different opioids have different effects on the sphincter. You want oxycodone.

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crazykitten20 · 19/05/2017 19:33

My daughter has it. She had GB removed at age 11 but pain continued. Diagnosed with SODD at age 13. I don't want her to have the stent op as there's a possibility of the op effecting other organs. My daughter uses GTN for the pain. She is now18.

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IvorHughJarrs · 19/05/2017 20:21

Really interesting as I have had a couple of episodes of what feels like gallbladder pain since it was removed some years ago. Will watch out for triggers now

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medicallycomplex · 19/05/2017 20:25

@Hulder gosh that's mad how you've got it now! Yeah my doc said he thought the same until I had the scan.
I've been in hosp all week with "biliary sepsis" and had Iv morphine and been fine but tramadol - that really is a trigger.

I'm glad I've posted I wasn't sure if I was just being given a diagnosis but it's nice not to be treated as a hyperchondriac anymore!

Sorry to those who also suffer, it's fucking horrible Flowers

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Hulder · 19/05/2017 22:18

Ivor same here. I identified my trigger being the co-codamol I was taking for migraine.

Sometimes I have a migraine that is soooo bad the gallbladder pain is worth it to make it go away.

Medicallycomplex different opioids have different effects on the biliary tract. It's interesting (and relieving for you) that you are OK with morphine but not tramadol.

I would guess your gastroenterologist has met patients with it, especially people having pain after gallbladder removal, but isn't recognizing it. Which isn't his fault, there isn't the technology there to pick it up and it's such a weird symptom. Maybe now he's met you, he'll find more.

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LittleShirtDeanTattooDream · 19/05/2017 22:31

Me!! Type 2 I think the gastroenterologist said.
Triggered by stress, codeine and certain foods (high fat). It's extremely painful. I have a gallbladder, apparently as is well with it too. I don't need surgery, I just avoid triggers. If I have an attack, I ride it out.

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LostSight · 19/05/2017 22:34

Codeine trigger for me as well. Doctor had never heard of it.

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heebiejeebie · 20/05/2017 09:37

Hulder have you tried sumatriptan?

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medicallycomplex · 20/05/2017 10:42

I'm glad there's a few of us out there as horrible as it is!
Been on amytriptline & buscopan for it for years, any one else use anything that controls it?
Done a symptom/food diary and no links as of yet

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Hulder · 20/05/2017 13:42

Heebie yes I have. Just rarely it doesn't work and I have to risk it.

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medicallycomplex · 20/05/2017 21:11

How many attacks do you all get?
I seem to be getting them more frequently :(

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Haffiana · 20/05/2017 21:18

Haven't got it and never heard of it, just butting in to say that MN is a REALLY remarkable place!

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medicallycomplex · 20/05/2017 21:54

@Haffiana it is, it was something I never heard of and didn't know others out there suffer too

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MissSmiley · 20/05/2017 22:10

Hi I have it too! I have also had my gallbladder removed but the pain from this is double that of a gallbladder attack. Also the problem was ambulance crew would always give opiates for the pain essentially extending the attack.
I was diagnosed and had an operation (via ERCP?) in Dec 2014 to snip the sphincter muscle in the pancreas. I was unlucky and got pancreatitis (25%) risk and had a week in hospital but fingers crossed I have only had one attack since when opiates were given. I had assumed the op would mean I could tolerate them but apparently not. It was a tricky op and I had to go to a bigger hospital where a professor did it.

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MissSmiley · 20/05/2017 22:13

Forgot to say I'm coeliac and follow LCHF diet so the fat thing hasn't been a trigger for me. I did give up alcohol while I was having the attacks as that didn't seem to help and I found even a small amount was making me very sick. Still can't tolerate certain things like wine now but that could be keto diet as tolerance lowers with that.

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MissSmiley · 20/05/2017 22:19

Hulder I can tolerate tramadol is that similar to the one you mentioned?
crazykitten sorry to hear your daughter has it. What is GNT? I don't think my op was a stent just a cut to the muscle.

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CesareBorgiasUnicornMask · 21/05/2017 06:19

Hulder thanks for the info! This is for the birth of DS2 as I'm likely to be induced - that's a shame about pethidine as it was amazing last time!

I'm a medical student (just finished 4th year) and also kind of thought it was a made-up thing in textbooks until I got it Blush.

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