Post Cholecystectomy Syndrome - NEED HELP!!!

[Suz777333]

My sister has similar symptoms to so many posts that I have read on this site.  After 5 mos post cholecystectomy she seems to be getting worse; chronic nausea, pain in her upper abdomen (left and right) radiating around to her back.  She has had stent placed and removed in bile duct, 2 ERCPs, MRI, Cat Scans, blood work, etc. etc.  She has taken so many medications and nothing touches the nausea except the dilauden (sp?) and something else that just put her to sleep.  I do not understand why no doctors can help.  She has seen Dr. Simon Lo last week at Cedars Sinai who is reviewing her 1st ERCP results but she was told today she cannot get back in to see him again until December.  The doctors all tell her this is not emergent, however, she is getting so bad and says she does not want to live anymore and cannot wait until December.  We are seeking more psychological help for her at this time until she can see Dr. Lo again.

Please, please can anyone offer help at all.  I know there has to be an answer out in the world somewhere.

Suzanne

[Ferraro]

This is very interesting.  I had my gallbladder out 2 weeks ago but before that my blood work showed H.Pylori.  My doctor wants me to go and get another blood test now and I will to see if it shows up again.  I noticed when I eat ice cream I feel sick.  You may be onto something.  Thank you.

[Over_Dairy]

My sympathy to your sister!  I had a similar experience 25 years ago that was finally diagnosed as a hiatal hernia/duedonuem ulcer.  And, the trigger was not bacteria but an allergy to milk protein (casein/casinate).  (See the no-dairy web page for avoiding these widely used food additatives.  They even "wash" tuna to make it "whiter" with milk protein.)  I went from 60 pills (Zantac) a month to zero once I cut out the milk protein.  And, even today if I eat things with milk protein, I get a "food poisoning" reaction. (BTW, real butter does not have milk protein in it!)  And, only Motrin stops the cramping.

Frankly, after 6 months of chronic pain like your sister describes that flared one week of every month and then gradually subsided until the next flare, I was at my wits end.  (My whole gastro system would shut down.)  That's when a gastro gave me Tagamet.  It helped manage the symptoms for 2 years until I moved away.  The new gastro took me through Pepcid (made me severly hypoglycemic); Prilosec (made me dizzy and caused migraines); and finally Zantac.  Every scope showed the same thing -- hiatal hernia and small ulcer in Dueduonum.  It was a mystery.  But, once I quit eating milk protein, I threw the meds away.  

[CalGal]

Suzanne, was manometry done during the ERCP's? And if so, what were the readings? Why, specifically, were the ERCP's done? Has she had both her liver enzyme and pancreatic enzyme levels checked lately? If so, what were the readings? What medications is she now taking - all of them? Was she diagnosed with SOD? Did she have problems immediately following surgery for the GB removal? Did she have stones/sludge?

What specifically are her symptoms besides the nausea?  They typically wouldn't use dilaudid for nausea, so something else has to be going on.