Sphincter of Oddi dysfunction, what now?

[RachHenson]

Hi there, after suffering with chronic pain in my upper right quadrant for the past 8-10 years I finally got referred to a gastroenterologist today and after a thorough consultation, I was, for the first time in my life, diagnosed with and given a name to my condition - sphincter of oddi dysfunction. The Dr was quite certain that my condition was due to my stressful job and commented that it was a rare condition he had only seen in 4 other patients - all of whom were women in a similar position. I had 4 or 5 hospital stays, A&E visits over the years and each time bloods are taken and results normal. My Dr thinks that the condition will settle over the next couple of years but I'm inclined to disagree. When the episodic attacks come on I am doubled up in pain and though bizarre, I find lying on objects such as a hard deodrant can or similar hard object and rolling around on it gives me a little bit of relief but not enough to stop me wanting to admit myself for more pain relief.

I really don't want to face yet another 2 years of just 'waiting and seeing,' so am curious to know of any other options to investigate, treat, prevent or deal with the attacks please?

Any comments would be appreciated.

Many thanks

Rachael


This discussion is related to Sphincter of Oddi Dysfunction Questions.

[bigbezzer]

Just up date , I had botox done on 21/11/13 and feel iam getting some benefit after 3 weeks , I now get no bloating and the pain as decreased , it is still there but not as bad about 3/10 compared with 6/10 so I would say that is positive , the procedure is quite simple and done within an hour , the team in Southampton is superb and I wouldn't have any reservations about having it done again , utc

[tigerprincess408]

an update and query, bigbezzer I am aware it can cause pancreatitis hence why I refused an ercp -botox has been given the go ahead and I am due to have a round after Christmas aswell as having that they want to do an endoscopic ultrasound to check bile ducts even though mri confirmed them clear, I am still dubious about the botox as I don't know the success rate hence query if anyone has had it done yet? my doubts are if the sphincter isn't functioning properly anyway what advantage would paralysing it do ?

[bigbezzer]

Hello tiger princess , I don't want to worry you but you can get pancreatitis from having SOD , I know because it happened to me the pain is unbelievable , I go to southampton on Wednesday to find out if I can get Botox , UTC

[tigerprincess408]

I too have got sod type III I am under UCLH and they too are waiting authorisation of botox injections, I have had sod for 2 years now the pain started straight after cholecystectomy but has got worse over time I have such bad pain I have to go by ambulance to hospital to have a high dose of iv morphine it is the only thing they relieves my pain I have 2 children and would rather go through labour than this pain. My local hospital in brighton are fantastic ok they don't understand the condition but I just take my letters to prove what I have and they give me pain relief straight away which is all I want at the time is too be pain free then they ask me the same questions over and over but the more info you can give them about the condition the easier it gets to get treated.
I have tried amitriptyline -no effect doctors and I agree not to put me through ercp due to risks as my kids have there lives disrupted with my frequent day trips to hospital let alone weeks in hospital, buscopan has no effect either.
I also can't connect any triggers I have tried no fat diet and have lost way too much weight I am now at 6 1/2 stone it ended up getting psychological as I thought if I don't eat I wont be in pain but have realised now that I still have attacks of pain so there is no point, I only take paracetamol  as certain medications start it off sometimes I can tolerate oramorph and other times it starts it too.
sod is a very hard condition to understand as I can't put my finger on anything specific that can help I have also become agoraphobic  
as I am worried there wont be a hospital near by or to have an attack in public would be mortifying as I scream and curse where I cannot take this pain, I hope they come up with some new advances in medicine but I have come to the decision with the docs that I would rather have these attack than have pancreatitis which can be serious and life threatening so I would rather be here for my children and in pain than take any risks, I will try the botox when it becomes available but as stated before it is not permanent and not guaranteed to work good luck to u all

[trinity510]

Please can you give info on where botox is available in uk as my doc in london said that he hasnt got authorisation yet but thinks i should have it before the ercp as he thinks the procedure is really risky for me
Anyone know if it is available in australia?

[tay345]

i just had the botox procedure done, i also have sphincter of the oddi. did you have any side effects after the procedure? my doctor said its suppose to take up to 2 weeks before it starts working but its been 5 days and im still in a lot of pain. so im just nervous that its not going to work