Sphincter Of Oddi Dysfunction

[beepe]

Hello, I'm a young person about to undergo lots of testing for a rarer condition called SOD, It's so hard to find other people with the condition and even harder to know where to ask about it! It's a biliary condition so I thought here might be the best bet.

I'm only eighteen and this is all very new and scary to me, I'm just looking for someone with the condition to ask some questions, if there is anybody.

Thank you!

[BritishLiverTrust1 Partner British Liver Trust]

Welcome to the forum,

As this is a rare condition, there may not be many (or indeed any) members who are able to respond to your post.

If you haven't already, you may find it useful to look at this page on the Guts UK website:

gutscharity.org.uk/advice-a...

Best wishes

British Liver Trust

[Mistee]

So, unless things have changed drastically in the last 2 years, there's no an actual test for this condition as far as I'm aware, my diagnosis came more by way of a process of elimination.

When I first started having stomach problems (which are now referred to as death pains because you feel like you're dying while wishing for death) my friend was adamant I had gall stones as what I was describing was very similar to what she'd experienced. She was 21 when her gall bladder was removed and I was around 35 at this point. My Dr didn't agree with gall stones, he said thought it was more likely a hiatus hernia or one of a handful of less common conditions which wouldn't be found unless my gallbladder was removed (😉) . I was initially referred for a scan, which did find gall stones but stated they were non symptomatic. I was then referred for an endoscopy, which confirmed a small sliding hiatus hernia and GERD.

Fast forward a few years, I'm early 40s and the death pain that used to raise its ugly head once or twice a year, was now making appearances every couple of months and I was vomiting every time the pain came too. One occasion was so severe I had 2 attacks in one night and a third the following day. That one landed me in A&E. After going through my history, I was given anti sickness meds and a gastro referral as the Dr on duty that evening believed my once non symptomatic gall stones were now causing problems. I was also offered to be admitted for pain management as I'm already on strong pain killers for a degenerative disc disease so the only thing they would have been able to give me was iv morphine. On that occasion, the pain was starting to ease and the antisickness meds had helped so I went home.

Fast forward another year or so (and now having much more frequent attacks) my gallbladder was removed. I had a delightful pain free 10 days before having my next attack. My gastro surgeon explained there were a couple of explanations such as a rouge stone that was missed during the operation or a less common condition that presents the same as gall stones so couldn't be identified until the gallbladder has been removed (😉😉) an investagatory procedure was scheduled not sure if it was an endoscopy or MRI as I had several of both over the months that followed and a rouge stone was found initially however, a follow up endo/MRI found it had gone on its own. Attacks were now daily and often up to 2-3 times per day so I was eventually booked in for an ERCP (a more invasive endoscopy) and as that particular procedure was following 2 seperate, 5 day hospital admissions via A&E (to control the vomiting and pain), the Dr performing the procedure couldn't find much so decided to do a Sphincterotomy (which is the treatment for SOD and is basically just cutting that muscle so it can't stay closed) on the off chance it would help. That was in Feb 2021 and is how I got my diagnosis of SOD. I've had very little issues since and my liver tests are all normal again now.

So like I said, diagnosed through a process of elimination. That said and with hind sight, there are a handful of symptoms that I now feel were overlooked and after reading other people stories on here - I now feel are kinda textbook SOD: I would constantly be told that I'd triggered the attack by eating fatty foods or drinking alcohol which is online with gallstones however at the time I was an active slimmingworld member and avoided fatty food like the plague. I did indulge in a few glasses of prosecco on a Saturday night but as I repeatedly pointed out - that didn't explain the 2-3 attacks per day. The other big symptom, which is going to sound grim and I'm really sorry for this, but often times, the pain would kick in around 1-2am which would generally be 4-6hrs after I'd eaten my final meal of the day. By that time my food should be digested yet I was bringing up chewed up, undigested food. Baring in mind the sphincter of Oddi is the muscle that controls the flow of digestive juices into your stomach - that, to me, should have been a major indicator. Unfortunately I'd never heard of SOD at the time and it had never been mentioned to me until I was in the recovery room following the ERCP. If you suspect you have SOD and any of this last bit sounds familiar, I'd be tempted to ask for an ERCP and ask the specialist for a Sphincterotomy. They may not agree to it, as (unless things have changed in these last few years) the gallbladder usually needs to come out first, but it can't hurt to ask and save you from unnecessary surgery. I don't think there are any big risk factors to having the procedure if its not needed but your specialist would know and explain if I'm wrong.

Best of luck, I hope you get sorted!! I wouldn't wish death pain on my worst enemy!!!