Spinchter of Oddi Dysfunction, need help

I was recently diagnosed with this after struggling with pain, elevated liver enzymes, nausea, unable to eat a variety of foods, and general abdominal discomfort.

I am looking for some information.  I am under the care of a specialist in Indianapolis and getting ready to start my second round of medications due to side effects from the first round.

I was told the only way to have an ERCP is to be sent to a surgeon who will have to cut into the portion of my bowel that is no longer connected to my stomach so that they can access my bile and pancreatic ducts and risk pancreatitis.

Does anyone post-DS suffer with this sometimes debilitating disorder?

Has anyone had an ERCP done post DS and if so how was it done?

Are you on medicines and what do you take?  I started on Levbid and Elavil and being switched to Levsin and Celexa.  For pain I can take up to 4000mg of Tylenol a day, but with my liver enzymes jumping up to 400+ most times I try not to take Tylenol, so most days I just manage with the pain.

Any information is a help since I feel like I am one in a million with this GBS and this disorder.

I don't know much about it, but I've wondered if I had it because ever since I had my gall bladder removed (a few years pre-DS), I have not been able to take codeine-based medications without severe abdominal pain. I read somewhere that this condition sometimes develops after gall bladder removal, and can make it impossible to take codeine. But I haven't had a true diagnosis and haven't had any other trouble. Luckily since my DS I haven't needed pain meds much, so it hasn't been an issue for me.

Best of luck with your procedure! I hope it helps you.

The only time I had a sod reaction was during a procedure for liver biopsy. That time it was in response to demerol, and I have heard the sod is usually from codeine/narcotics. I had an immediate (within 1 minute) reaction after the iv demerol was given. Severe rolling spasms of pain over liver area. Idiot MD gave me MORE demerol and continued the reaction. Since then I have consulted a pain management MD. Now I take an old med...bentyl (anti-spasmodic) BEFORE ANY PAIN MEDS. It has worked well for the limited times I have used it.  Other peeps here have suggested a spoon of peanut butter with pain meds and indicate that it also works well. I realize you seem to have long term issues, but maybe something like the bentyl would help. Common after gall bladder removal as all the women of my family have it if gall bladder has been removed.....even with no wls.

marilyn in ohio
ds i*****
235/140

I'm actually headed down that road but am currently trying to find a specialist who I trust w/my rearranged insides. Stressful. I'm not on any meds but in pain daily. Liver biopsy turned up nothing & my enzymes are back to normal right now. I get incredibly nauseous when I take certain meds(Cipro, Dilaudid, Vicodin) so I just avoid all meds, except for a couple of motrin if absolutely necessary for headache or whatnot. All of the sudden, over the past 2 weeks, I cannot tolerate carbs of any kind. I get the nastiest gas & discomfort in my entire abdomin(yes, worse than normal) & it's constant, lasting days after I've had the carb. I also don't feel like I'm emptying out when I have a BM. Debilitating? Absolutely!