Pbc and SOD?

[Aussielouise]

Hi. Does anyone have sphincter of oddi dysfunction as well as pbc?

[Lurganlass]

Yes, all the time, and the pain is unbearable.

[Aussielouise in reply to Lurganlass]

What stage is your pbc? I'm only stage one but the pain is stopping me in my tracks. I've had SOD type one for 17 year

[mylo2]

Not sure what SOD is, would someone tell me please?

[GrittyReads in reply to mylo2]

It's 'sphincter of oddi (odi?) dysfunction. The condition occurs when the sphincter that lies at the junction of the bile duct and pancreatic duct, and thus normally controls and allows the bile and pancreatic fluids to flow into the first part of the duodenum. There is pain from the build up of fluids, plus other issues may develop, as the fluids are not released into the gut, both to carry out any digestive or other functions, and for some components be eliminated from the gut.

[GrittyReads in reply to GrittyReads]

Ooops!

Forgot the crucial words: "pancreatic duct ... 'is not opening and closing properly' ... "

Gritty

[mylo2 in reply to GrittyReads]

Thankyou Gritty reads.

[58goose]

Yes, I have both. Was referred by my local gastroenterologist to a London hospital who diagnosed SOD and who brought up the possibilty of PBC which my local gasto later confirmed. I've found certain foods and painkillers aggravate the SOD so try to avoid them as much as possible. I still get attacks, usually at night, but thankfully the chronic ones are rare. I was offered an operation for the SOD but declined it.

[GrittyReads in reply to 58goose]

Which foods and painkillers??

[58goose in reply to GrittyReads]

Nuts (more than just a small handful), too much acidic fruit, very fatty food and any painkillers stronger than paracetamol or ibuprofen. My first attack, when I honestly thought I was having a heart attack, was after taking Tramadol for the first time after my gall bladder was removed! I do get attacks when I don't know what's triggered them but not so often.

[GrittyReads in reply to 58goose]

Thanks, I don't get SOD, but I have a lot of ileo-caecal pain, and nuts and seeds (especially pomegranate, which I love) are main causes, but I think the acidity is an issue for that, too.

[Aussielouise in reply to 58goose]

What op were you offered?

[58goose in reply to Aussielouise]

It was one to stretch the neck of the bile duct so that the pressure that causes the referred pain wouldn't build up. One reason I declined it is because there was a good chance it would trigger pancreatitis and what should have been a day op would have turned into several days at a hospital miles away from where I live.

[Aussielouise in reply to 58goose]

Do you ever get attacks that last for weeks?

[58goose in reply to Aussielouise]

No they only last for a short time but the pain can be so intense it feels like hours!

[Michiganpbc in reply to 58goose]

How was your SOD diagnosed? I ask because they can't pinpoint what is causing on and off sever pressure type sharp like pain I have, it was mentioned I may have this but never had any testing for it. Thanks ahead for any information. When I look it up there are several different tests they do.

[Aussielouise in reply to Michiganpbc]

I was lucky in as much as I was a radiographer who worked with a gastroenterologist from time to time in Ireland when I first became sick about a couple of months after having my gallbladder out. The pain was so bad I was rushed around to accident and emergency straight away then to ultrasound while I still had the pain and they were able to see my bile duct was really dilated, and could even see that it was in spasm, that together with raised liver function tests worried them as an workmate had just been diagnosed with pancreatic cancer a couple of days before and they didn't want to take any chance with me so I had an ercp the next day. Which showed that I had an abnormally small ampulla so they did a sphincterotomy which helped for about a month then the pain started up again worse than ever. Turned out on the next ercp that my Sphincter had scarred up even tighter than before the sphincterotomy so it was decided not to do another but put a stent in that made things even worse and I ended up with pancreatitis so they took stent out.

Also I when I had morphine or codeine it makes the pain worse that's a indication that's it's sod. GTN spray works to relax sphincter so if GTN works when you have a spasms, or if morphine or codeine causes it. You get dilated bile duct or deranged lfts more than likely that's what you have. Especially if you're had your gall bladder out. You probably had it before gall bladder removal but because they have taken away the gall bladder which it gets worse.

[Michiganpbc in reply to Aussielouise]

Thanks, i think after reading these 2 replies I have it, my doctor mentioned it a few times but never said to do anything because I had a ERCP for blocked Biliary duct from having PBC but we didn't know i had PBC during that time only months after the ERCP when tested for it, AMA positive confirmed my ongoing liver area pain and elevated liver blood tests. then I also had my gall bladder removed and then this pain like you both describe started worsening. She has said to take different medications levsin bentyl but they don't help so I don't take anything for it just grin and bear it.

[Aussielouise in reply to Michiganpbc]

Try gtn spray. It's the stuff you take if you have angina. If it's works it's great but it can cause headeaches. Buscopan is good if you take it before an attack really takes hold

[58goose]

Hi there Michiganpbc. I didn't have any tests done, just diagnosed with the evidence presented. I was meant to have an MRI where they would inject a special substance to see how my bile duct reacted (to see if the pressure built up) but after about 15 mins in the scanner and at the point they were going to inject it, they found that they had run out of stock! It was the sphincterotomy that I was offered but declined. My pain started the day after my gall bladder removal op several years ago and I still get pain but I cope with it by avoiding trigger foods/meds as much as possible. When I get an attack I use deep breathing to help me through, just like during a birth contraction I suppose!! Can be hard sometimes when it's really bad and I get clammy/feel sick too but I deep breathe and sip cold water till it subsides.

[Michiganpbc in reply to 58goose]

Thanks, sounds like a manometry to check pressures? I have heard of that. I don't want anymore surgeries or invasive procedures so I stopped complaining about it. My doctor said I can take levsin bentyl but they don't help so I don't take anything anymore. I guess if it got really bad I will ask her to test me and give me something else to try. Thanks for your reply.