Bile Reflux

[SammieD]

Hello, I need some help.  28yr/old female w/ hx of choleysystectomy (2.5 yrs ago), referred pain, ULQ abdominal pain {constant: cramping, pressing, heavy, aching, exhausting, unbearable, intense, nausiating, and tender to the touch.} Other symptoms include: (severe) constipation, nausia/vomiting, and weight gain. I have had every test known to man done: {endoscopy, colonoscopy, gastric emptying study, small bowel follow through, and HIDA scan w/ hopkins score.  Complete image study to include: x-ray, CT, MRI, MRCP, and ultrasound.}  I have been possibly diagnosed with:  Post-choleysystectomy pain syndrome, sphincer of oddi dysfunction, IBS, ulcers, stones, and GERD.  All of these diagnoses have been ruled out. One test did show something; the HIDA scan showed bile-reflux.  I am a mess without constant narcotics due to the unbearable pain.

I take 8-10 percocet a day.  4 reglan a day.  4 amitryptaline at bed time.  Phenegran as needed.  

Is it true that PPI's make "BILE" reflux symptoms worse?

Also, I do NOT suffer from acid reflux at all!!!  Why do I have bile reflux but not acid reflux, and why do I keep getting treated for acid reflux?

1.  What non-invasive approaches are there to curb bile reflux?

2.  I know of the roux-en-y procedure, and my doctor is flat out against it.  Are there any doctors in the Pacific Northwest area (Puget Sound, Seattle, Tacoma, Olympia, etc...)  Who take cases like this or who would be willing to perform the gastric surgery?

My problem has been going on for a year this month, and has been getting worse.  Please help!

Thanks

Sam

[CalGal]

How was SOD ruled out? The only definitive method is via ERCP with manometry. You did not list those tests in your post. Furthermore, if it is SOD, narcotic meds will only make the symptoms worse. You'd have to take 'mega' doses which would only 'space your head out' to the point that you might get a 'feeling' of limited relief, but that would only be because you'd be 'spacey.' Narcotics raise the interductal pressures and make the condition worse.

[SammieD]

SOD was ruled out via the MRCP and was confirmed by the HIDA scan w/ Hopkins score.  Also, narcotics slow many different body functions, and in my case my gastric functions are in slow-motion.  I have noticed the Reglan has helped my symptoms on days I run out of my percocet, furthering my belief it is the Bile Reflux as the HIDA scan said; but with that I still cannot go more than a day or two without narcotics before I am hugging the toilet ready to end myself.

With that, I am back to square one.  I need advice, help, and treatment for my bile reflux. My doctors are only willing to go as far as Reglan to do so. Any suggestions???

We have brought up Ursodiol, domperidone, and erythromycin as possible medications and have been turned down.  Getting a new doctor is not as easy as it may sound as my husband in in the military and I see an army doctor on post.

[CalGal]

I don't quite agree that the MRCP and HIDA would rule out SOD, but that's neither here-nor-there.

E-mycin is very 'iffy' in it's functioning.

I wish I did have some suggestions, but unfortunately I don't. I have heard some reports by individuals that the use of OTC bile salts helps, but it's hearsay.

I'm not familar with the Pacific NW area, but some of the better individuals who handle postcholecystectomy problems can be found at the University of California in San Fran. You might also want to try GI groups associated with university teaching hospitals in your area if you decide to go outside of the military.