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Virginia Franzen (@ginnydoll)

Sphincter of Oddi Dysfunction: What helps you?

Digestive Health | Last Active: Jun 21 12:16pm | Replies (34)

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I have this condition. I figured out a med regimen that stops big attacks. It’s a three day long process to keep it under control but it is stopped. I do have some annoying symptoms from the meds I use after. At the initial attack I use 10mg of Reglan. It is prescribed 3 times a day so around lunch time I would take 5mg of reglan and a sublingual Levsin .125mg. I have to take the reglan and levsin together or the attack will not stop. If it’s a stubborn attack and those do not work baclophen can be added.
It’s important to take the reglan 1st you have to get the sphincter functioning again, and then move into slowing or stopping the spasm. Hyo will not fix it if it’s the first med used.
Symptoms I experience: headache, diarrhea, basically a full hangover affect for about 2 days after.
While taking the meds it’s important to drink lots of Ice cold water and continue eating even if it hurts. You have to keep the digestive juice flowing so by eating that allows the sphincter to open and allow juices to flow. When we are not eating it shuts off more. So keep the gi flow going small snacks, regular size meals, and lots of fluid. -not a Dr, just a patient who has been through hell because of this condition. I will advocate and share my regimen to help others because the Drs have NO CLUE even the good ones

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Replies to "I have this condition. I figured out a med regimen that stops big attacks. It’s a..."

Hello @amber142 and welcome to Mayo Clinic Connect. This is a forum where patients share and receive encouragement and support in their health journies.

I appreciate the good information that you provided as to how you deal with SOD. It sounds as if you found a GI specialist who knows something about treating this disorder.

Finding a GI specialist who is familiar with SOD is amazing. It is a rare disorder and not always recognized by many GI doctors, so you were very fortunate.

Was surgery ever done to treat your SOD? I'm wondering also when the symptoms of SOD started?

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!!!