Biliary dyskinesia sphincter of oddi
Posted , 9 users are following.
Moving on from my previous post, I've seen an upper GI consultant this afternoon about my pain. He's double checked the ultrasound and there's no stones, doesn't think it's an ulcer as I've been taking meds which would have improved the pain. So now thinking sphincter of oddi although he says this is unlikely because it is so rare!
He's ordered a tonne of blood tests and is sending me for an MRI and then HIDA scan. If it's not this he says it's medical and I will have to go down the allergies or IBS route. So it seems this will all take a good few months, and I have to stay in constant every day pain, bloatedness and nauseousness!
Is sphincter of oddi very rare?
0 likes, 27 replies
rocky31676 ket0207
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ket0207 rocky31676
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rocky31676 ket0207
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Pancreatic insufficiency has Intraluminal causes:
Cystic fibrosis
Chronic pancreatitis
Carcinoma of pancreas
Zollinger-Ellison syndrome -----
Epigastric pain suggestive of peptic ulceration is common, especially in men and in sporadic cases of ZES.
patricia_11100 ket0207
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I had the SOD surgery but it wasn't what is causing my pain. No one can figure out why I have this pain.
carol02471 ket0207
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Hi
No it's not rare but it's incredibly hard to diagnose & some Drs won't accept it as an issue.
They think my day has it but it didn't show on the MRCP party becauher magnetic linx implant messed up the images, nothing showed on ultrasound so they are looking at the catheter into the bile ducts next.
Free from diet & no dairy helps but not a lot, she has been told to remove all skin off fruit so the Oddi doesn't get anything stuck & the body does not have to struggle to break it down, once the Oddi spasms its total agony for her and vomiting starts & its A&E then to get morphine & Buscopan via Iv, she feels like you awful pain and so many test and still not 100% until the ne t test hopefully.
The specialist in London deals with Sphincter of Oddi all the time and he said it does se to be it given pain and intolerance to food, he also does Botulinum toxin injections to stop the spasms so we are just hoping it's diagnosed soon.
At work another persons mum had it as well so it's not as rare after GB removal.
Hope this helps.
patricia_11100 carol02471
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When I had the SOD surgery there are no tests that will show if your sphincter is working or not. They just do the surgery and if you feel relief than it is what was causing your issues. If you don't feel relief, such as my case, it doesn't harm you but you certainly wouldn't want an unessary surgery. The only diagnosis is your symtoms.
carol02471 patricia_11100
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Did they do the surgery via a camera down the throat or keyhole ?
Just next step is a test with a catheter into the bile ducts so wondered how as consoon holiday till the 23 Rd .
Thank you x
patricia_11100 carol02471
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carol02471 patricia_11100
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katherine42413 ket0207
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Hi, I didn't have gallstones and it was only with a HIDA scan that they found my gallbladder was only working at 14% but when I was referred to the surgeon he didn't think all my symptoms would go away after removal of my gallbladder, my physician had also suspected sphincter of oddi dysfunction to me prior to the scan. I had a type of MRI called an mrcp which is specifically looking at the gallbladder and everything around it, mine came back as normal as did most of the blood tests the only blood test that was a bit erratic were my liver tests but they were still within the satisfactory range but I know when I had my gallbladder removed they did a type of ultrasound of my liver while they were in there but I don't know the results yet.
I've now had my gallbladder removed because it wasn't working properly and I still have pain but at this time I don't know if some of this pain is due to the recovery process of having my gallbladder removed but I know that I'll be seeing the surgeon again in a few weeks.
No, from the research I've done it isn't rare but it is a disorder that isn't fully understood or any specific medication for it as its only been the last few years where they realise that it is this valve thats causing the problems and they don't know why.Not all doctors know or understand this from everything that I've read. They generally take the gallbladder out initally to see how much pain is there afterwards. You'll find there is certain test for the sphincter of oddi dysfunction which they use as the gold standard
There's lots of information on the web if you look at both biliary dyskinesia which is what they diagnosed me with, this covers several conditions and sphincter of oddi dyfunction.
I hope this helps, but keep me informed with how you're getting on. x
heatherc70 ket0207
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I have very rare vascular conditions and I HATE when doctors say it can't be that because it's rare... that DOES NOT mean that you don't have it! I had three doctors tell me I didn't have the two rare conditions that I later found out that I do in fact have.
I do not know if it's rare but keep standing up for yourself. Rare doesn't mean it doesn't happen to people.
ket0207
Posted
Thanks for the comments.my comments. I think he was trying to reassure me by saying it's rare! Rd of people having this HIDA scan to find the gallbladder isn't working properly, he didn't mention this to me but if I will be having that scan they would find that out anyway wouldn't they. I do find that I've started eating things which don't need as much digestion so am sticking to soup, soft bread, rice, well cooked vegetables etc. Pasta does not sit well as I don't like it hard, meat also unless slow cookered! At least I know now that I am going to have a long wait until anything is found so have to try my hardest to find a way to deal with the constant pain. Is buscopan helpful? I've been told I can only take paracetamol due to digestive problems associated with other types. Paracetamol does nothing for me so I won't bother! I can afford to pay for these scans privately so am reverting back to NHS now I've seen the consultant so I will no doubt be on a long waiting list
carol02471 ket0207
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Buscopan does help & peppermint tea, if your bad A&E will give you Buscopan injyas it gets in faster but you need to let them know it's suspect GB issues.
No dairy & easy to digest way to go to make life a little easier for you.
Horrible for everyone
katherine42413 ket0207
Posted
Hi, you will need a HIDA scan as that is the general route via NHS. Mine didn't mention it until much later after I'd had other tests. It was the last test that I had done. If your gallbladder isn't working then its classified as biliary dyskinesia and if your gallbladder isn't working they'll take that away and then review you again. I had mine removed at the beginning of this month and I've just had an appointment through for the end of the month to see the surgeon again. I expect he will give me some medication initially to see if it reduces the pain. My gastro gave me some nifedipine last year to try and help but its got alot of side effects and I had to stop taking it. They generally use this for the sphincter of oddi dysfunction but there isn't any specific medication just for this condition
I found cocodamol took the edge off of the pain where nothing else touched it.
Looking at your diet is a good start as some foods can make it worse. I found that slow cooked meat caused me alot of pain as it made the sauce very rich and my body couldn't stomach it but we're all different.
Keep me updated with everything. x
anca_03849 ket0207
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Hi my doctor said the same to me and I had endless pain and tests. I payed privately in the end. And it turn out to be sphincter of oddi. It is more common than we know general GP just don't have enough knowledge about it. It is a very hard thing to live with.
patricia_11100 anca_03849
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carol02471 anca_03849
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Hi Anca
Can I pjease ask what pain medicine you take, my daughter is really struggling & we go back to the specialist next week when he comes back from holiday so I'm Truro go armed with as much information as possible, I know there will be another test sadly just want to give her some hope if others have got through this it will help her x
anca_03849 carol02471
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Hi carol
It was hard going for me but getting it sorted it was a whole lifestyle change for me. I tried amatriptaline 10mg however this did not work well with me. Now I take buscopan on a daily basis and then I use brupernorphine very low dose only when I get pain. I had to go gluten and wheat free diet. No dairy no pork eat more organic and natural products. Only 2 meals a day as my stomach can't cope with to much food. Also look at what blood type she is and look at eating according to your blood type as it helped me loads. Has she had her gallbladder out?
If you got any more questions feel free to ask
Anca
anca_03849 patricia_11100
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anca_03849 patricia_11100
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carol02471 anca_03849
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Hi Anca
Yes gallbladder removed & pain worse day by day she is on dairy free & free from foods but today projectile vomiting from water only.
Having big issues with the GP as they don't understand Sphincter of Oddi Disfunction, so had to get her an emergency appointment with a private pain management specialist, and she goes back to London next week to see a specialist over the Oddi then.
It's a mess for her at 20 just unfortunate she got so much worse after the GB was removed . Specialist mentioned Botox injections to try but I think there might be another test yet.
Just horrible.
Thank you for responding & so glad you are managing so well x