To JayBay

[ohiogirl]

JayBay, I haven't been on in awhile, but I remember you said that you had ERCP (two I think you said it took???) to help with a diagnosis of Sphincter of Oddi Dysfunction.  I wondered how you are doing post ERCP and how many years it has been for you?
I appreciate the update!

[Jaybay]

Hi there!  Sure, I remember you.  How's it going?  :-)

I had one ERCP back in about 1998, so it was nearly 10 years ago.  Before the ERCP, I had severe reflux, vomiting and lots of RUQ pain.  The symptoms were very similar to those I experienced before gallbladder surgery.  My gastro doc did the ERCP and sphincterotomy, meaning he cut out the muscle controlling bile and enzyme flow to the small intestine.  I had immediate improvement with the reflux after the procedure, but my pancreas got a tad upset with the dye.  I felt pretty crappy for a good month, but then everything got better and had no further problems in that regard.

ERCP sounds simple, because from the patient's view, it's the same as endoscopy.  This procedure really needs to be done under experienced hands.  It takes some skill to keep the dye away from the pancreas.  From what I've read, anywhere from 3% to 10% of ERCP patients will develop acute pancreatitis as a result of the procedure.  It never hurts to ask your doctor how many he's performed, and if he's ever had patients develop post-ERCP pancreatitis.

Are you going to have it done yourself?  Good to see you around again!

[ohiogirl]

Thanks for responding!  I am doing well so far (fingers crossed) so no ERCP w/manometry and sphincterotomy for me just yet, but it always helps to hear of a success story.  I saw a great doc at IU, and I am in good hands should I ever need them.

Did you happen to see Mystery Diagnosis on Discovery Health?  They are running reruns of an episode where they learn the patient has SOD.  They really make it sound like once they figured out what it was, she had an ERCP and bang...all cured.  Which hardly ever, EVER happens so it was a little frustrating, but I know there are people out "here" somewhere who have had luck.   So again, it's nice to know that you are doing well 10+ years later!

Thanks for the update - it was nice to see you out here still.  I haven't been on this site for awhile, but missed it and I've been back just reading for a couple of weeks.  Thought I'd check on ya here!

Thanks!

[Jaybay]

LOL!  Yeah, I saw that episode on MD the other day and just had to laugh.  I knew exactly what was going on with that poor girl and had to practically cheer by the end of the show.  Actually, that case was just like my sister-in-law's.  She had her gallbladder out, but was still barfing before she was discharged, so within a couple days they did the ERCP and sphincterotomy and she's been fine ever since.  That was 2 years ago.  

Glad to hear you're hanging in there.  At least you know where to turn if you get to feeling bad again.

[meltons90]

Well I don't know where to start.  Hopefully you can help me.  My husband has been having what we've called attacks for about 5 years now.  I started when he was 38 and now he's 43 and they have been coming closer and closer together over the years.  No doctor has been able to diagnose it, but we have been limited only just recently getting health insurance.  ER visits were how we were coping.  My husband starts to get sick, gagging and weak and this last for a few days.  The vomiting starts then subsides.  We thought it was cyclical vomiting syndrome, but now I don't want to overlook something like SOD, which we only learned about watching a small part of Mystery Diagnosis.  Does SOD mymic cyclical vomiting syndrome?  My husband's bilirubin levels go from 2.5 to 3.5 when tested so we know it is something more.  Thanks...Susan