Biliary dyskinesia sphincter of oddi

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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?

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    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!

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      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

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      Hi I found I had to go gluten free and wheat free diet no pork and eat very small meals. No dairy or caffeine. It is life changing and living with the pain is no jokes some days. I am on a very low dose of brupernorphine only as and when I get the pain.

      Take care

      Anca

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      Hi anca, apart from milk in my drinks I don't have much dairy at all  if anything but I'm finding coffee is ok as long as I don't have too  much! 

      Luckily I've got an appointment with my surgeon at the end of this month so I can speak to him about the continued pain which I believe he thinks is sphincter of oddi dysfunction as they did mention this to me before surgery as they gave me nidfedipine to try which should help calm the spasms but I couldn't take it as it gave me side effects so I had to stop taking it.

      What have they done for you with this, have they done an ercp with an SO manometry which I know they sometimes do but not all the time.

      take care xx

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      Hi I have had loads of test camera both ends mri scans and the professor I saw suggested not to have the surgery to cut the muscle as he said I will end up with pancratitis or it will be unsuccessful so try and control mine with died and brupernorphine. Not easy to live with.

      Anca

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      Hi Anca, I noticed that you had your gallbladder removed 7 years ago, have you been in pain all that time or has it come on more recently? I know the information that I've read that it is quite common to come on months or years after gallbladder removal but they don't know why the muscle malfunctions, its an unknown.

      Yes I had an mrcp before Christmas which didn't show anything so they are just going from my symptoms. I know that when they do an ercp that there is a risk of developing pancreatitis but I would've thought after having the muscle cut that it wouldn't happen as its the back up of bile which shouldn't happen with a cut muscle as it aids the flow. 

      Some of the reports I've read depending on the classification that you will have been put in have been between 70-80% successful. I know its not 100% but I'd rather that % than being in pain all the time, it must be so difficult for you. Are you still seeing the doctor about it? 

      xx

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