Good news at last, I went into hospital again with gallbladder like pains, which has been happening since my gallbladder removal in Feb

[Elainey]

this time they kept me in for a few days and did various test, this time they where able to tell me I have sphincter of oddi dysfunction which is good news for me as I now know what all the pain has been for all theses months but the bad news is I have to have an ERCP, has anyone out there had this done as I'm really not looking forward to this!!

[Helene]

Hello Elainey, I also have SOD and I had an ERCP in May 2012.

I had my gallbladder taken out in 1998 and had pain most days for 13 years before my ERCP was performed. The diagnose of SOD was not talked about until quite recently, I think it was in 2008. In 2010 and 2011 I had Botox injections into the sphincter, to see if that could help with the pain, and it did! …for about 3 months at the time, but it also helped confirming the diagnose of SOD. I have a long list of other health issues and that made an ERCP and a sphincterotomy a last resort for me, a much more risky procedure, and a procedure less likely to be successful.

But in May 2012 I finally had it done, it turned out I had papillary stenosis and they performed a sphincterotomy – and I got pancreatitis afterwards, which is one of the risks involved. My SOD pain disappeared… for 4 months only, and is now slowly coming back. I am now discussing with my gastroenterologist whether to have another sphincterotomy, a bigger one this time, since it obviously worked the first time. But I am a high risk patient and no-one likes to have me on their operating table! (I have a blood clotting disorder + Ehlers-Danlos Syndrome, to mention some.)

I assume your ERCP is going to be done with the aim to do a sphincterotomy if the test shows the sphincter is too tight or the pressure is too high. It is good you have got a diagnose so soon and didn’t have to go around with pain for years. What have you been offered this year to help with your pain, has anything helped, and has anyone discussed what alternatives there are to surgery? SOD is classed according to your symptoms and liver test results, SOD l, ll, and lll, which type have you got? Where do you live, and which hospital is taking care of you? If you are ending up with a sphincterotomy you would want a surgeon who performs several of these every week, not one who does it once or twice a year. The surgeons experience is very much linked to the result of your procedure. And finally, any other health issues you have might have an impact on how your recovery will be and how likely you are to end up with a successful result the first time around.

Here is some relevant info if you need it: my.clevelandclinic.org/diso...

Good luck, hope your pain goes away forever!

Take care, Helene

[teadrinker]

My mum & grandma both had ERCPs done & neither remember a thing about it. My mum's a nurse so knew exactly what they were going to do to her but said it was fine afterwards. My grandma was really worried beforehand but said it was a walk in the park in the end. My mum's advice to grandma was to have every bit of sedation they offered. Good luck.

[Elainey]

Hi Helene, sorry to hear you have had pain for 13 years and i hope the next ERCP you have last longer then 4 months.

On various occasions I did suggest to the doctors in A&E that I thought it was SOD but they brushed it aside topped me up with drugs and sent me home, but this time they did a hida scan which discovered that I had SOD type II, over the past few weeks I have been taking amitriptyline 10mg every night, I also take buscupan 20mg 2-3 a day and paracetamol. But I still am in a lot of pain, before I was taking 50mg of amitriptyline but I could not function I was just to tired so I stopped it, I'm not allowed to take Endone as this makes the pain worse, I see a specialist next week so hopefully I can get some more answers on what I should and shouldn't be doing. I live in Australia and I'm not sure if there's a special clinc here for SOD. I will be taking everything they offer before I have an ERCP.

Thanks for your help and information

Elaine

[cyprus96]

Hi Elainey pleased to hear you have finally found out what is causing the pain, i really hope the procedure works. I have never heard of it befor but after reading about it it pin points all my symptons. I am still in awful pain and am now going back to see the surgeons later this month. Let me know how you get on.