sphincter d'oddi dysfunction oh yea gr8 :(

[spandau1980]

hi eeryone i have SOD and of you lovely ladies have this? I cannot take codiene or opiates as they cause horrendeous spasms and i need somethin as have slipped discs in my back... i cant take NSAIDS either and paracetamol doent cut it! anyone in same boat... anyone with some advice on what pain meds are out there i could have .. i ahve pain management appoint but not til may 11th! :(
sharon

You might need a prescription and it is not easily available in the uk but Flupirtine is a non-opiate painkiller which might be ok with SOD: ukpmc.ac.uk/abstract/MED/20839897 People use it for fibromylagia but it works on all sorts of musculo-skeletal pain.

Can you get a GPs appointment urgently and maybe ask for a prescription for it by name if they think it might be compatible with your needs (though again pharmacy may need to order it in)?

Hi, I think I might!

It has not been confirmed but a hospital consultant said this might be what I have (this was quite a few years ago). Every time I've said 'sphincter of oddie' to anyone I know they've just laughed, which doesn't help much!

What have you been told? I was told it goes into a spasm which is very painful (not wrong there) but there was not much help other than that, although I was given some v strong pain killers to take when it happens. It's bloody painful. I get pains across my front/diaphram area, when it happens I can't breathe, it feels like I'll die, then
it stops and it's all ok again.

Are you getting some help/support? I'm so sorry you have this. I'm not sure it's the same as mine, but it sounds awful.

wibblybibble x-post, hello, I'll look at this too, thanks

OP - just checked, I was given pethidene tablets (only 4), to use when the attacks are bad.

Hey spandau . On the plus side, great to hear that you finally got a diagnosis after all this time!! But pain relief appointment on 11 May is taking the piss isn't it. What do you do inbetween! So are they going to manage this with just pain killers? Have they not mentioned a spincterotomy via ERCP? I thought cutting the muscle to make it less tight was the solution.

I'm having one next week myself, although my consultant didn't mention SOD, he just said that he thinks the stone in my buile duct has knocked against the duct and caused scar tissue to build so stone is now stuck. He can't go in via the bile duct so needs to cut the muscle at the bottom - which will then hang down. Surely they could do this with you too.

You poor thing. You have really been through it.

hi pears... yes SOD is awful cant breath feel like your numbers up then it ll go just like that sometime 15 mins sometimes 5 hours! i have nt tried pethidine yet tried other stuff and ouch!!!!!!!!! my gastro just said SOD then dischasrged me errrr hello i kicked off and have appoint this friday MILTON KEYENS hospital are dreadful where are you based? hi bambino sorry to hear your still in pain this really is a nightmare isnt it??? tried to reply three times on my laptop but it kept freezing grrrrr
wibblebibble are you in the uk? ill defo ask about the pain killer never realised that existed and neither ob did my crappy docs who said there isnt any thin they can do so ill be bak there asap and get an answer!! thanks to this fab site and gr8 ppl its nice we all have somewhere to come to get some support xxx

Spandau, have they mentioned treatment for you at all? You seem to be drip fed information and I can't understand why nobody is telling you that SOD can be treated. Can you write to the head consultant and ask to be seen by someone else or can you go to another hospital?

I had my ERCP today. They had to make a cut at the bottom of my bile duct, and pulled out a 9mm stone. I now need to apply pressure on getting a date for my lap chole as there was talk of another outpatients appointment inbetween, which I don't need as I know what the next course of action is so that will just cause another delay. Every nurse, consultant and endoscopist I have seen have all been utterly brilliant, but things don't happen quickly.

hiya hun glad that went ok for you... MIlton Keynes Hospital are RUBBISH worst HOSPITAL ever!!!! Ive put in formal complaint... doc gave me pain killers as couldnt find those ones above and read side effects... 1-10 out of every 100 have a heart attack on them... thy went in the bin! x