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
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
Did I have what surgery?
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
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
I had my gallbladder removed and was fine for 7 years no pain could eat and drink what I wanted then the pain started again out of no where. Now I am diagnosed with sphincter oddi dysfunction.
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
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