Sphincter of Oddi Dysfunction: What helps you?

My daughter got really sick 11 years ago while pregnant. So they removed her gallbladder while pregnant due to 3 to 5 emergency room visits a week. Now to this day she has extreme pain in abdomen back and has problems using bathroom. I ran across the sphincter of oddi here and now more than ever I think this may be her problem. She's at the emergency room as I'm typing this. She has such bad pain and is down under 100 pounds and she's 45. She throws up acid so strong it leaves burns in and on her mouth. She's had several colonoscopies and the one down her throat. Still no answers. Is there anywhere I can take her for diagnosis? We live in New Mexico and healthcare here if you go to hospital they think you are on drugs. Her doctor even prescribed her lidocaine and malox to make GI cocktail at home. I'm scared she will die before anyone can help her. 11 years of extreme pain and vomiting she tells me often she wants to die. Help please. She can't work because she never knows when she will have an attack. They last for a day to a week and that's if she can get a emergency room doctor to help her. Today I called ambulance at 5 pm. She just called to tell me they stuck her in a wheelchair and pushed her to waiting room. I just called at 11:50pm and talked to a hospital administrator and hopefully they will do something to help with her pain

Does any one have this and how are they being treated ? My daughter has this and she cant eat anything. she has lost so much weight.

I am glad this works for you! But not everyone can afford that type of treatment and some institutions in some states do not offer it at all! I will be 20 next month, I have had SOD for 6 years, since I got my last round of the Gardisil/HPV vaccines. These have ruined my life in many ways and I can no longer function. All Dr's in Oklahoma just tell me to go out of state for help since they are not willing to do the ERCP. They don't even believe I have it because I have type III. I was misdiagnosed for having IBS and none of those medications worked. I've been on many medications for the issue. All the ones on the SOD list either didn't work for me or are just now starting to wear off because my SOD is worsening. I've tried the medical/medince route and its not working, they suggest pain management when studies have shown pain medications make the symptoms worse. They of course also said it was stress and started talking about the mental aspects of it. While those can affect SOD it is not the ONLY cause and effect trigger for SOD and it won't just magically go away with mumbo jumbo pretend the pains not there meditation therapy. I've dropped 20 pounds in 2 months and can hardly eat or drink. The first time when all this started I was 90 pounds. I want to know why Drs are not educated with this issue because I hear about many girls in my age range having this all the time! Why is this not a bigger issue to Drs!? People who vomit almost weekly and cannot eat or drink, they get malnurished and dehydrated but they still brush you off because you are too of complex case. IJUST WANT/NEED HELP!!!

I’m 95% sure I have SOD, gallbladder removed in 2018. Symptoms have progressed severely over the last 7-8 mths. Can’t really eat anything, nausea, vomiting, intense Epigastric pain, down 20 lbs over last 2 mths. Every G.I. doctor I go to and specialist will not do the ERCP test due to no elevated liver enzymes so there’s no proof and the risk is not out Weighing the benefit. If I keep going the way I’m going there will be nothing to me within a few months I went from a size 10/12 two months ago to a size 2/4 and yet no one well perform this test I feel it is necessary. I take lorazepam due to it being a smooth muscle relax sent I am on hysocosamine as well and Norco if needed. Episodes became more frequent on a daily basis after getting my Covid vaccination I can eat very small portions throughout the day but cannot tolerate meat, greasy food a lot of food make me sick. I’m surviving off of tunafish and chicken noodle soup with some vitamin waters. I have never had elevated liver enzymes and I’ve never had the chance to get labs drawn with an episode due to being completely debilitated and almost passing out. Looking for some help and reassurance I’m not crazy!!

Does any one have this and how are they being treated ? My daughter has this and she cant eat anything. she has lost so much weight.

After my diagnosis I found a commenter in a forum claiming to be a doctor ask if anyone had checked their thiamine levels (B1). The commenter cited something about muscle function and thiamine. I didn't get mine checked but started a daily thiamine supplement and while I occasional feel tightness in the area I have had no episodes since.
For me an episode meant hours to days of extreme pain and vomiting leading to ER visits for potassium pumps and rehydration.
Avoiding super fatty meals, eating smaller portions than most people and cutting most all processed or prepackaged foods from my diet I think also helps.

You are not crazy!!!! I ended up having an ERCP about 7 years ago. There are 3 types of this… to me you would be considered Type 3 like me. I have had labs drawn during and after attacks… that’s what I call them. Nothing is EVER elevated!!! After 7 years… all my symptoms are coming back and I had one of the worst attacks and like you wanted to go to the ER but could not get myself there. I feel your pain… hence the reason I ended up joining this group!