Sphincter of Oddi....

So after going round and round with bunches of doctors, my GI doc may have found the problem.

Sphincter of Oddi.  Figures it would be something ODD... LOL..

Has anyone had this issue?  I would have to go back to the bariatric surgeon and have him place a gastric tube in me.  Then wait 3 weeks, then have sphincterotomy and ERCP.

There is a 75% chance that this will take care of my stomach issues.  However, there is a greater chance that they will have to go in and perform this again down the line due to scar tissue build up.


I am reallllly hoping that someone has had this same problem.. Well, not really because it sucks horribly... but would love to hear some feedback on successful surgery.. 

ERCP is almost impossible to do on a RNY gut

I don't remember your exact issues, can you describe them again? 

I have had SOD issues for TEN years now but the diangostic (ERCP) is impossible, and the fix (Via ERCP, which is impossible) would involve a procedure with a HIGH risk of pancreatitis afterwards.

For me the need to do ACTUAL surgery just to diagnose the problem (since ERCP doesn't work, they go in laproscopically).....and to follow that up with a highly risky operation on the sphincter. I'd rather my four to six "episodes" a year over the risks of the cure.

So....tell me your symptoms,  this is one area I feel pretty knowlegeable.

Had RNY in May, then towards the end of October, started having pains in right side.  Went for GB ultrasound, then HIDA scan showed 4% use of GB.  So that was removed 11/12/10.  I was ok for about 2 weeks then everything went south. 

Right in the middle of my abdomen, I have constant tearing, burning, stretching feeling along with stabbing pain in right side.  Docs tried numerous meds.. questran, hyscomine, amitriptylene, etc.. I have been to the ER with obnoxious pain more times since november then I care to admit to.  It gets worse after eating or drinking.

I have not had a single day since November without pain.  I have gone for CT scan which didnt show any obstructions.  My alkaline phosphatate is rising quickly in the past few months.  I am basically at my wits end.  I lost my job due to the pain.  Just recently had to apply for disability so everyone would get off my back about it.

Really frustrated and feel like this is my last viable option.

Awww you poor thing!!!! Sounds much more extreme than anything i've dealt with

What I would do is make SURE that they CAN do the ERCP with your gut arrangement..... make sure you hae a copy of your RNY operative report so your doc will know exactly how long the instrument needs to be.

I know that the procedure as described in the many articles I've read can REALLY help.... I just only have one to three day episodes every two or three months and I can handle that.

I have SOD, but had my ERCP with sphinterectomy prior to my RNY. There are a few GIs who are now doing "double ballon" ERCPs which supposedly is a better option for folks with our altered anatomy.
 
It did help with symptoms a lot, but didn't completely cure me. My GI put me on a low dose of Elavil (25 mg 1 x day) after my sphincterectomy and suprisingly enough that really, really helped decrease my symptoms (thank you LORD!)

I still have an attack about 3 times a year or so, but generally they aren't nearly as bad as before, and I only very occasionally have to go to the doctor or ER for treatment for it - generally only when I can't tell if I'm "just" having an SOD attack or if I'm trying to have an attack of pancreatitis or have a stone in a bile duct. (I've had bilary tract stones once, and acute pancreatitis on seveal occasions and am completely paranoid about them now ).

Good luck!

See the lack of full recuperation from the procedure kept me from doing anything about it, it just seemed not worth the risks.

I've been thinking of going back on elavil (small dose) to help with my insomnia as nothing else seems to help, and elavil has helped me in the past..... I didn't know it helped with the SOD too, but that doesn't surprise me that much.

I figured i'd go ahead and tell my story while waiting to hear your details

In early 2001, one evening, I started feeling awful. I was hanging out at my boyfriend's house, and he rubbed my back because I had pain between my shoulder blades, focused on the right hand side.

As the evening progressed, it got extremely bad, and I finally had the boyfriend take me to the ER. Just after I paid the copay and filled out the paperwork, I felt a WHOOSH of relief and the pain was gone. I'm a frugal nut so I just stayed to be seen. They did an emergency ultrasound on me and within an hour the results of all the tests were in..... my white blood cell count was through the roof, and my GB was inflammed and FILLED with stones. They decided that I must have it out, eight hours after my last morsel of food..... emergency surgery, as it was fixing to explode.

That was the first I even knew I had GB problems. When I woke up in recovery, it was to the recovery room nurse telling me to stop screaming. I was in agony..... back to the OR...... more stuff done...... not as much pain after, but still a significant amount of pain....so ERCP to clean out my liver and pancreatic ducts on the second day, and significant recuperation after that.

Eight weeks out of surgery, I began to have the SAME symptoms. Sphincter of Oddi they said, but I had no more time off from work for the procedure, and as the attack subsided, I forgot about it. Plus I heard how dangerous the "cure" was.

Sicne then I get four, six, sometimes more episodes each year. I take pain medicine, and it passes. A couple of times it's bad enough so that I have referred pain up in my jaw and cheekbone on the right side. But it passes, and I go on with life. Once I went to the ER (pre-WLS) but they still shrugged it off as better to live with than explore.

I'm right now in the midst of the LONGEST time without an episode in ten years. My last "episode" was in November. I've never gone this long and perhaps I'm over it finally? Now that I think about it, i haven't had an episode since my BMI got down to 25... maybe there is a connection.

I've heard of some people TRYING to get an ERCP but the thing is that the scope has to go through the pouch, down the intestines, to the Y junction, then up the other intestines, and finally to the duodenum.... in my ccase it would need to be 250 cm long (that's like 7 feet?) ..... usually it ends up in a failure because the instrument needs to be too long....and it's out of reach..... there is an MRCP diagnostic that can be done to pinpoint if it is a SOD problem, but to fix it (aside from the risk OF the surgery) you would really need to have surgery.

for myself, I live with the SOD symptoms and hope I don't get pancreatitis out of it.

I've told the docs that I also got referred pain in my jaw ... they looked at me like I was nutty. I guess I'm glad I'm not the only one with that weirdness.

I told my GI doc about that and he nodded.... said it was to be expected.

He'd rather me left things as they are until/unless it gets much worse.

Copies of RNY, GB removal and anything else is all being sent to GI doc.  I know that because of the RNY, things arent where they are supposed to be. 

I just know that SOMETHING has to give, SOMEONE needs to have that 'AHA' moment because this pain is really driving me nuts.  There is pain every day. without fail.  Then I have 'attacks' which add to the pain that was already there.  They could last from 1 hour to 1 week.  Crippling.  God Bless anyone who lives with chronic pain.  It's for the birds!

The docs have tried Elavil and other anti depressents that help with pain.  They all basically gave me anger issues.  Which is funny, sad..but funny.  I am really just a happy-go-lucky person and not alot bothers me.  Except for this pain.. and I refuse to take narcotics.  I hate them passionately.

This is the end of the road for me.  Last ditch effort to figure out something.