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

[medicallycomplex]

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 :/

Yes it's awful for her and at such a young age too. She's incredibly brave.

GTN - glyceryl trinitrate. Usually used for angina. Relaxes all the muscles etc in the body and therefore the sphincter too. Her pain was so bad that the consultant decided it was the only option. Other than an op.

It works almost immediately but then gives her a dreadful headache. But she says she can manage the headache.

As I say - she's very brave.

Gosh @crazykitten20 I missed your post scrolling through, your poor dd that's awful! I thought I was young for all of this (GB removed at 20 now 25)
I hope she doesn't get attacks too often?
I came home from hospital Friday and already had 2 attacks. They said to go back but there's nothing they can do.

So glad I found this thread. I used co-codamol for gall stone attacks and post-operative pain and was fine. A little while after op if taking co-codamol I would get the terrible pain, took me ages to link the 2. Tramadol always eased symptoms after an hour. When I finally linked the two I stopped taking codeine and haven't had any attacks for years.

I mentioned it to doc once as he was going to prescribe codeine and he had never heard of this happening. I'm off to google now.

I see a fair bit of it but then I'm a surgeon who takes lots of gallbladders out so my perception is probably a bit skewed! Generally, once diagnosed (and that can be tricky) patients are offered an ERCP (camera down into the first part of the small bowel, under sedation) and either injections of Botox to relax the sphincter or a cut through the muscles of the sphincter. If the diagnosis is correct, treatment is usually effective.

@welshweasel this is what I've been offered, I'm seeing surgeon on Thursday. My local hosp doesn't do it so been referred to the one in another county.
I'm from Wales so if you are (guessing from your username) it could be you operating on me 😂
If I asked for general would they do that? I've had a few gastroscope which have been horrendous and the sedation didn't work so I'm terrified of having anything put down my throat

@hairypaws I'm glad I posted, was beginning to think it was a made up thing.
I've not found much on the Internet and it's been mainly American sites, can't find out about it on nhs website unless I've not looked very well.

Medically, When i had the op I had to have general as it was too delicate to risk and movement during the procedure. As far as I can remember the main con is the risk of pancreatitis was even though I got it it was still worth it for me as it cured it as long as I avoid opiates.

@MissSmiley that's a good point, I'm glad you had it done that way.
I'm prone to pancreatitis anyway so I think I'll expect to get it so if I don't it's a bonus? What could you have for post op pain relief?

Where are you being referred? Swansea I'm guessing? It would be very unusual to offer an ercp under general anaesthetic. The sedation you will get is very heavy, much more so than what you get for standard endoscopies. Most patients have no recollection of the procedure at all.

Yes Swansea, local hospital is withybush, seeing surgeon in Carmarthen but told op will be Morriston. All confuses me ah that's good I didn't realise there was the option for heavy sedation.
I was told because I'm on amytriptline that it lessens the effect

Ask them about GTN. Use tablets not spray. Then as soon as the pain is gone you can whip the tablet out

@crazykitten20 I shall do, I'm going to write it all down so I don't forget Thursday at the appt.
Been told to keep a symptom diary for 6 weeks too.

Let me know if there's anything I can do to help 💕💕

Thank you @crazykitten20 I don't want to bug you haha!

This makes so much sense. Sorry I get codeine induced pancreatitis would that be this?

Yes @PlayOnWurtz that would be it, it's taken 4 years and numerous hospital admissions to get a diagnosis due to hardly anyone knowing what it is, now I know it all fits together!

This would make so much sense and if it can be fixed I can again get relief from my chronic pain issues that currently I'm trying to manage just on paracetamol. I'll bring it up next time I'm on the Drs.

@PlayOnWurtz yes bring it up! I have chronic pain due to other issues (stemming from lupus) and found tramadol really set it off, codine was ok for me. I have lidnocaine patches for my back but sometimes during an attack I put them on my stomach and it does ease the pain a bit not that my dr knows this

Me too!! I had my gallbladder removed about 7 years ago but had the exact same pain for the week after my op. Went back to A&E three times in a week and then I got pancreatitis. They assumed it was a retained stone so I had to go back in for a pancreatic stent to be fitted. Seemed to have done the job. Problem is I still had recurring pain for two years after. Back to hospital and the gastro team said it was likely sphincter of oddi dysfunction but that I had already had the stent op that they would do to remedy it so I was basically told to manage with omeprazole and avoid opioids. I mostly manage now but get the occassional flare up.

This is a quite good info sheet
corecharity.org.uk/wp-content/uploads/2016/06/Sphincter-of-Oddi-dysfunction-leaflet.pdf

And I didn't have a general. But was heavily sedated. The first ERCP took a long time and I had some complications with the sedation but I was transferred to another hospital for a second go and that one was much better. Didn't remember a thing.

@ButtonBoo what do you use for the pain? Yes I've been told a few times about a retained stone and it's not that so it all makes sense.
I'm glad it's been ok with sedation :)

A lady I work with has it..I only know because we both had our gallbladders removed at similar times but her pain continued.

Omeprazole helped. Being still and not moving also helped. But otherwise, just riding it out. I was given both tramadol and pethidine for the pain. I got on better with tramadol but after a while my GP didn't want to prescribe it anymore and I understand his concerns so I relied on omeprazole. Plus after two years or so, its mostly died down. I do get occasional spells but get on the omeprazole quickly and avoid sugar, fats etc for a few days.

Hope you're feeling better soon.

MissSmiley funny that you had problems first ERCP and had to go somewhere else to have it done. My first time didn't work (not a good experience) and they moved my overnight to a Professor (who trained the first doctor) and he is reportedly the best in the country. You're not in London are you???