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?
Did he consider EPI ( Exocrine Pancreatic Insufficiency) Disorder ?
Oh no never head of that. Would that come up on one of the blood tests?
I had the SOD surgery but it wasn't what is causing my pain. No one can figure out why I have this pain.
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.
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
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.
It is known by a broader term - GI malabsorption.
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.
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.
Hi Patricia
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
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
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
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
Yes Carol down the throat. Good luck to you.0
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.
Do you have the surgery? If yes are you feeling better? Did you feel better right away? Thanks
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
I've tried the buscopan, it certainly feels less intense, thank you. I've also swapped my milk for coconut or almond - my children both have milk allergies so o figures this was easy to do. I ate minced beef on Saturday night and the pain and reflux that evening and the next day were awful so I will steer clear of red meat. One of my daughters also has a gluten free diet so it's getting more and more tricky to cook a meal!
Hi, I found turkey, chicken or fish were the easiest things to eat but very small portions. A slow cooked meal like a casserole was the worst thing ever, I was really ill for several days due to the pain and I didn't have anything like that again! If you can find pain relief that works then continue with it, buscopan did nothing for me but I know it does work for others. Unfortunately in the end everything just gave me pain its just the intensity that altered.
You'll what works for your body at the moment, even after the op I'm still being careful as everything is very sore and I don't want to push it too soon and I just have to believe that I'll get there and be back to normal one day and you will too, its just hard at the moment so keep writing on here however small and we'll write back.
Take care xx