Sphincter of Oddi Dysfunction

[chasingpolaris321 214]

Hi all!

I had my gallbladder out about a year ago (one month post sleeve). I am pretty confident I have "sphincter of oddi dysfuntion" which essentially is when you can get spasms that block bile and cause a build-up in pressure. Long story short, an attack causes excruciating pain that feels like a heart attack.

One thing that sets it off (the only thing for me, thankfully) is narcotics. Something about them causes an attack, and so even though they used to be fine I can't take them anymore as far as I can tell. I found this out the hard way 6 months ago when I had a debilitating UTI and ended up in the ER because I took one of my percocets from sleeve-surgery.

I'm now facing a revision surgery, and I'm terrified about how they are going to manage the pain without narcotics. I'm wondering if anyone else developed this condition following the removal of their gallbladder, and if they have had to use pain medication afterwards for a surgery or painful condition? This isn't a very common disorder and I would like to be prepared to talk to my surgeon about it.

Thanks in advance!

Edited September 4, 2015 by chasingpolaris321

[Djmohr 6,965]

I am so sorry you are struggling! I don't have any experience with this at all but I wanted to reach out and wish you well.

Take care and I hope you get answers.

[chasingpolaris321 214]

Thank you :-) It wouldn't be such a big deal if I didn't have this upcoming surgery! Lots of people have had their gallbladders out here so I'm hoping someone might have some insight. This disorder seems to be a direct result of gallbladder removal. Thanks again for the well wishes!

[Stevehud 1,790]

look into medical marijuana, i used to be adamantly against it, but i had shoulder surgery, and i hate pain meds, a friend brought me over a vapor pen, and i tried a little and it was like night and day. no munchies, no coughing, none of that just the mice pain relief post surgery. Now i of course did it illegally, but perhaps you do not have to, or could, none of anyones business there. but it may just work wonderfully for you.

[Madeleine Renee 77]

I had my gallbladder out 2 years ago. I get violent diarrhea since, direct effect of surgery.

I take Olestyr, powder mixed in Water. Works wonderfully for cramps.

I am also allergic to all kind of painkillers, be it morphine, codeine, any derivatives. At the hospital, they gave me benadryl with my injections. It worked fine.

You absolutely need to write all this down and discuss with your surgeon, he is the best and only one to guide you through this. I am sure there are solutions to your problem, your surgeon can help you.

[chasingpolaris321 214]

Thanks @Stevehud

I'm not opposed to that at all and that might be a good route for recovery. I live in CA and it's legal.

@@Madeleine Renee I am definitely planning on talking to my surgeon in depth about this. I don't want to wake up from surgery feelings like I am having a heart attack in addition to having my intestines rearranged.

[Mountaingal 322]

My daughter has the same problem since her gallbladder removal . I will ask her what she uses for pain control as she can't take narcotics. I had my surgery in Mexico and they used Tramadol for pain relief along with an NSAID...worked wonderfully.

[chasingpolaris321 214]

My daughter has the same problem since her gallbladder removal . I will ask her what she uses for pain control as she can't take narcotics. I had my surgery in Mexico and they used Tramadol for pain relief along with an NSAID...worked wonderfully.

I'd definitely be interested to know what she has used for pain medication. From my research I've found Tramadol but not much else. I had pretty extreme pain with my sleeve surgery so it's all the more reason to have as much info as possible ahead of time. Thanks again for your help!

[Stevehud 1,790]

tramadol is good, in the hospital the iv nurse gave me a wonderful piece of advice, " ask for IV tylenol."

Sounds simple right? but the stuff is expensive. But my insurance covered it so who cares . But it worked so well in conjunction with tramadol. after the first 12 hours the v tylenol was all i needed and then 24 hours i was home and no pain meds.

So remember that , trust me it really really helped.

[Daisee68 2,493]

@@chasingpolaris321 - Just curious if you ever found out anymore about this. I hope you are feeling better!

I thought I would tag on to your post to see if anyone had any thoughts. I still have my gallbladder and have been having the typical Right Upper Quadrant pain. I have had 2 CT scans (normal), Ultrasound (normal no stones) and HIDA scan with CCK (showed 76% ejection fraction - below 35% means abnormal - apparently mine is "above" normal). Went to GI dr who said it didn't sound like GB to him but gave me Bentyl (anti-spasmodic) and said if it didn't help, we would know for sure it isn't GB. Well good news (I guess) is that the med does help. I take it only when it hurts instead of as a preventative and generally within an hour, the pain has subsided. The pain doesn't really seem typical because it isn't triggered by food (obviously not eating high fat anyway). I can wake up with it or be woken up in the middle of the night with it and it sometimes will hurt for several days in a row then go away for a week or so. GI dr is stumped and told me to ask my bariatric surgeon. I had my 6 month appt yesterday and she sort of poo-pooed the idea. She said it is likely Sphincter of Oddi and that the Bentyl is perfectly safe to take long term. She felt that no further tests were necessary as I had plenty to know there wasn't anything really wrong. I hate being dismissed by doctors....

So, any ideas out there or more info about this SOD? Do I really just live with it and take the Bentyl as a pain med when needed? I did this surgery to get off of meds and so far I am taking more than when I started. Good news is the nausea and vomiting finally seem to have stopped (that was all due to a stricture which has now been fixed). The GI dr told me to call him after talking to my surgeon so I will do so next week but was just looking for some insight. The info I could find was a bit confusing other than to say it appears to be a relatively rare (yet common if that makes sense) side effect of gastric bypass.

Appreciate any advice...

[Madeleine Renee 77]

Well,

I had accute pancreatitis on March 14 and was hospitalised until March 27. At first they diagnosed it as being caused by medication. I had Roux-en-Y bypass August 18, 2015. No problems from that.

2 weeks later, on April 12, I ended up again in ER with intense pain and inability to eat more than 1 or 2 TB then this intense pain would start between my breasts all the way inside and radiate to my back.

After doing MRI, MRCP to check pancreas and liver, it was discovered that I had Sphincter of ODDI dysfunction. It is EXTREMELY rare, is NOT caused by gallbladder removal or bypass surgery, it is just bad luck.

Because of the bypass and the fact that they could not cut the sphincter using the usual gastroscopy way, I ended up with major surgery, cut from breasts to belly button, 4hrs general anesthesia and a total of 6 weeks in hospital, they had to tube feed me for 2 weeks before the surgery because by then, I was seriously malnourished.

Painkillers DO NOT CAUSE Sphincter of Oddi, the pain comes when eating the smallest amount of food or even drinking, the sphincter backs up the juice in the pancreas, the bile in the liver, the ducts become grossly enlarged and all of it is fairly easy to diagnose through MRI, MRCP. It is not a continuous pain it is like I said eating.

If your pain in continuous, it is something else. You need a specialist in biliary surgery and a renowned gastroenterologist working together to make this diagnostic.

Good luck. I am slowly recovering, 15lbs below my goal weight and trying to get back healthy right now.

[G8trgrl 31]

I was diagnosed 4 years ago with SOD. I had an ERCP where a sphincterotomy was done. That cleared my pain for 3 years. Then, my pain started up again. But, it came and went. I had actually forgotten I had SOD. I had my gastric sleeve done in June, then had my annual physical in July. My blood work came back with elevated liver enzymes. That’s when I finally realized my SOD had come back. I’m scheduled for another ERCP in about 10 days. It seems that the pain is getting worse as time goes by. It’s definitely worse since my gastric sleeve surgery.