Living With Sphincter Of Oddi Dysfunction | My Story

What is sphincter of Oddi dysfunction?
Digestion, through which the body transforms the food we eat into the energy we need, is a complex process. The liver, the pancreas, and the sphincter of Oddi all play important roles.
The liver provides a chemical called bile to the digestive process, and the pancreas provides pancreatic juice. These chemicals flow into the small intestine to help with digestion. The flow of these chemicals is controlled by a muscle called the sphincter of Oddi.
A sphincter is a muscle (usually round) that can open and close. When it's working properly, the sphincter of Oddi opens to allow bile and pancreatic juice to flow through, and then closes again. However, in a condition called sphincter of Oddi dysfunction, the sphincter muscle does not open when it should. This prevents the bile and pancreatic juice from flowing through, and causes a backup of digestive juices. The backup can cause severe pain in the abdomen.
There are two basic types of sphincter of Oddi dysfunction:
Biliary dysfunction (the digestive juices are backing up in the bile ducts from the liver);
Pancreatitis (the backup is occurring in the pancreas, and the pancreas is becoming inflamed).
There are also three categories of sphincter of Oddi dysfunction:
In categories I and II, doctors can find clear evidence of the dysfunction, such as abnormal blood test results or, with an ultrasound, a dilated (widened) bile duct.
In category III dysfunction, there are no clear-cut lab findings or abnormalities, and the only evidence of the dysfunction is the abdominal pain. Type III dysfunction is much more difficult to diagnose. Recent studies suggest that these symptoms may not be due to sphincter of Oddi spasm, and that they do not respond to treatment with endoscopic retrograde cholangiopancreatography (ERCP) and sphincterotomy.
All of the thoughts and opinions in this video are my own.
If you feel like you need someone to talk to then please comment or message me on Instagram: / _charlottehoda
Let’s support each other ♥️♥️♥️

[@joymurphy3195]

I have SOD. I am 71. And very active and healthy. I refuse big pharma meds and have eliminated ALL foods that cause pain. So my diet is simple but I have minimal pain. I take enzymes and probiotics and prebiotics. The worst things for me to eat is garlic, spicy foods, alcohol and dense meat like a steak or processed meat like hot dogs. Plus I chew my food til it dissolves in my mouth. I eat minimal sugar and zero junk good or soda pop. So I rarely have an event bec of my food choices. Pain or a boring diet… ? PRAYERS FOR ALL THE SOD PARTNERS OUT THERE ❤️.

[@nancyhunter6696]

Is everyone here not overwhelmed by the fact there are so many of us with the same story? I have been following Dr. Berg as he has some good information from diet to adding pressure to the opposite side to give temporary pain relief. If I had a genie, I would ask for world peace, my 19 year old body and gallbladder back. People keep adding to this thread!

[@DeadgurlSuperstarr]

This is my story as well. I recently had the mishap with morphine in the emergency room. Thank you for sharing your story!

[@BloomByCC]

Thanks so much for staying. Prayers for your healing🙏

[@jethrodull5860]

Literal chills watching this. I had my gallbladder out nearly 6 years ago and have been having intense pain sporadically ever since. I've stopped going to the hospital because I'm sure they've marked me as drug seeking, even though I decline morphine because it always made it worse. Thank you so much for this video. Sincerely.

[@racheldahliamusic]

Morphine and especially fentanyl in the ER make my pain worse than I thought was even survivable....literally!

[@thegreatpandemonium]

Hi charlotte, I’m late to this but I’m going exactly through what you’re describing here. I’m so unbelievably terrified. Same thing happened with morphine at the hospital yesterday, did ultrasound and ct scan and everything is normal. I hope you’re doing better ❤

[@BugOutBetter]

Opiates, and especially morphine can make it so much worse because of how is effects the sphincter. I found this out the hard way! Dilaudid will not have the same effect. So if you need to have pain medication administered, ask for that.

[@michelelevani]

Oh my goodness!!!! I was diagnosed with SOOD about 18 years ago and I know the pain and frustration that you’ve been through, but the treatment that my specialist put me on was life changing and it may help you too! After the gallbladder surgery, I had increased pain. I was so skinny from throwing up and malnutrition. I was then scheduled to have the stent put in and suddenly the surgeon stopped the surgery. From the tests, they found that my body wasn’t producing the enzymes necessary to break down certain proteins and it was wreaking havoc in my biliary duct. The treatment… I can’t digest meat, egg yolks or dairy at all! The dr said that I never could and will never be able to eat those foods again. They put me on a strict pescatarian diet, basically a vegan diet that includes fish and egg whites. I also cannot drink any red wine, but white is fine. I also take pancreatic enzymes to help with digestion. It saved my life!

[@marinmarin9911]

So you never eat meat even with enzymes?

[@michelelevani]

@@marinmarin9911 Maybe once a year with a large family dinner, I will try a small slice of turkey after taking enzymes. However, I still have acid reflux after, but no pancreatic pain. I was told by one doctor and nutritionist that occasionally, I can do that, only with turkey or chicken. When they first told me that, I was trying to eat it about once a week, but I got sick again, so I quit. I’m soooo much better now!

[@intuitivediane]

You poor thing xx

[@kidsTV2024.]

You’re not alone ! I’m so over it I’m almost at the point of them finally doing a cam check internally. I hope I get over this agonising pain already. It’s been 2 years & paying such high fees to these specialists. And I totally understand when you say noone believes you ! I believe you and I’m so glad your understanding what the hell is finally going on. You’re beautiful and no one knows your body like you do 🤍

[@carmengubb6454]

Thank you for your video, finally diagnosed last year, after 2 years of pain in and out of hospital. Would love to see a current update on how your doing, what treatment etc. Your video brought me to tears validated everything that I go through

[@swannee22]

I can't imagine what you've gone thru. I'm having some issues after gastric bypass and having gall bladder removal causing a lot of pain. You are in my most sincere prayers! Please keep me in your prayers too!

[@MsCheapface]

THANK YOU Charlotte! I just had an episode at the emergency room with the morphine debacle & have been SEARCHING for answers & feeling alone. My gallbladder was removed almost 25 yrs ago but for the last 4 yrs I've had unexplained bouts of pain & experiences very similar to yours (& others here) but none of my treatment team has been able to pinpoint the problem ( I also have Multiple Sclerosis) so, a lot of times I'm dismissed with transient symptoms that wax/wane. Thank you so much for posting your story & encouraging the fact that we often forget...WE know OUR bodies better than anyone. Blessings to you!

[@sarahgentz8983]

This video had me in tears, this is something I’ve been dealing with for over 3 years without a diagnosis and it’s so crippling. I don’t have the finances to go to a bunch of specialists for tests so it’s been very difficult and I feel so alone. Thank you for sharing, It helps to know I’m not the only one.

[@meyersonfire]

I've noticed I don't have episodes when I stay away from fried food, sugar, chocolate--my favorite things, lol. I've been doing Dr Christopher's liver/gallbladder formula along with lower bowel formula, plus a low-fat, whole food plant based diet. I also suspect that taking Christopher's Complete Tissue can heal the sphincter. God bless

[@ginam.165]

OMG this is my story too! This is almost exactly what happened to me. Thank you for sharing 💜

[@christinad8771]

Same here! It's been awful! I am so sorry there are others who are going through the same thing. It truly breaks my heart. I am glad this story was shared because this illness makes us feel so alone and misunderstood, it is comforting knowing I am not the only one suffering through these motions. My heart goes out to you all.

[@Jennygeee]

Thank you for sharing your story which could almost be mine I had my gall bladder out but was in hospital three weeks as my liver enzymes didn’t go back to normal. Over the years I’ve had at least five ERCPs and I’ve also had pancreatitis, although thankfully my severe attacks only happen about every two years, in between I get milder pain which only lasts for half an hour and then I’m fine, when I get severe attacks my liver enzymes go so high and I feel ill for days, feeling nauseous and light headed and unable to eat, I’m actually going through it now after a severe attack on Tuesday, it is now Thursday and I’m forcing myself to eat. I called the doctor and because of covid I’m not in hospital but I’ve had it so often that I know what happens and that it will gradually improve. I am so sorry you are having such a hard time and actually grateful that I only have severe attacks every couple of years, but I’m much older than you and it’s not fair you should be having this.

[@samyoud1684]

This is the same as me. I have been to the hospital 4 times in the ambulance with chest pains only to feel foolish when I’m told it’s not a heart attack. This pain is far worse than the gallbladder pain I had and only started after it was removed. You made me cry x

[@lisacollins171]

I love what you said about knowing your body! I believe I have SOD and am having an upper endoscopy with ultrasound in April. Thank you for sharing!

[@racheldahliamusic]

You'll need an ercp. Upper endo isn't looking at the right organ....

[@Rob-ys6ot]

You poor thing. My friend has been diagnosed and I'm researching. Your vid is really informative. Thanks.

[@pathogge2707]

Thank you for sharing your story. You are so beautiful. I am in the beginning stages of sod. I believe I have it but have not been diagnosed yet. Waiting for tests but the virus has cancelled everything for now. I still have my gallbladder. No stones but my pain is very localized. Vomiting does help relieve the pain. I appreciate your story.

[@charlottehoda]

Thank you so much for taking the time to watch and reach out. I really feel for you, just keep going until they do something about it and do not give up! Ask to see a Gastro specialist. I wish you all the best and hope things are sorted soon ♥️xx

[@heathermartinez7175]

This is me!!!!! Exactly everything you’re saying. I had an ERCP yesterday. In the hospital now because of pain from clipping the sphincter of Oddi. 50% chance it’ll help the pain. I’m so so sorry you have had to go thru this!! I know the pain is more horrible than anything I can imagine.

[@YourFreeBeats]

How has the surgery helped? I was scheduled to have one but the surgeon said I would receive little relief so we did not do it.

[@albussnape2]

Been through hell with that pain and doctors, even local specialists, trying to coerce me to have gall bladder out-even though imaging, including the HIDAscan did not show gall bladder disease. Had to consult with major GI specialists in NYC and Boston. First thing I was told after they went over all test results was “Do not have your gallbladder removed.” For some of us, the sphincter of Odii spasm can be relieved by antispasmodic medication, such as hyoscyamine. The surgical interventions at the sphincter of Odii can be very dangerous. Yes, irritation of pancreas/pancreatic duct can cause us to end up in intensive care with pancreatitis. Prayers for all who suffer this sphincter dysfunction and the excruciating pain. 🙏 Try to find a gastroenterologist who knows about this condition and is compassionate and willing to hear you and discuss the tests and options. It has helped me to find others here who have suffered and learned about this. Grateful!

[@millienorton5009]

I feel so bad for you! I also had similar issues. I woke up with the same pain you described, had my gallbladder removed out five days later I started feeling fatigue, went to the Dr. He said I developed a pseudo cyst. Waited three months for the surgery because my lnsurance didn't cover it unless it ruptured I had major surgery I've never been the same, I have digestive issues all the time . But I'm alive thank God. I'll be praying for you sweetheart

[@simmons3588]

I’m going through the same thing. The pain is horrific. Only labour is worse. In hospital they also gave me morphine........the pain then sky rocketed. When I told the a and e doctor he made me feel like a was mad. I’m now waiting for an endoscopy ultrasound to check for stones in my bile duct ( also had my gallbladder out). This video has made me feel hopeful - thank you

[@charlottehoda]

I also had ultrasound and endoscopy. I wish you all the luck xx

[@Liz-yu3lc]

This IS me!! Thank you so much for sharing your story. I'm not alone or crazy. I'm scheduled for a Sphincterectomy after 3 YEARS of searching. I wish you all the best. ❤

[@suziepeck5717]

Do not have it done as there can be serious consequences

[@ladymillions8981]

Sunday, April 23, 2023. Hello Lady😊..I'm in the U S(America) I'm experiencing some Gastro issues as well...the topics of the Spincter did come up... But this is my first time having such and unusual form of gastroil issues that I have experienced prior in my life over the last 30 something years... the radiating pains and sharp stinging/ stabbing pains are a 1st for me. I'm in my beginning stages of gastro care and as I progress toward healing and ideas that they show me I would be honored and privileged to share with you so that you too can be healed... I know that I'm comfortable feeling of the pain and the stinging and not being able to sleep I've been there. But I will surely keep you posted on this journey of healing as you do for me…. dot. By the way my love. I'm praying for you hoping that we can stay in touch blessings until we chat again❤❤❤🙏🙏

[@blessedhope9233]

Thank you for sharing your story. I’ve had SOD for 12 years now. I’m in bed a lot, with a heating pad. I barely go out and do things. It’s so horrible! It has ruined my life.

[@waynerain2372]

May God bless u & ur loved ones.

[@blessedhope9233]

@@waynerain2372 thank you so much ❤️

[@samanthafloyd7519]

You had me in tears! I too have this disease after having my GB removed in 2013. I had 2 attacks just today which is what let me to look up things on the internet. I empathize so much for everyone that has this. You said it right when you said it’s a million times worse than the gall bladder attack. I also have achalasia and a very damaged esophagus that may not be lasting me much longer. I’m just sick of being in pain 😢. When I have my attacks when my husband is present he cups his fingers way up under my rib cage and does a visceral massage on the area of the pain. It’s hard to do because I’m usually screaming and flexing my abs. But he does it and 9 times out of 10 it will shorten the attack. It’s the only thing I have found so far that helps.

[@heathermartinez7175]

Oh my goodness I will totally try this massage next time I have an attack but usually I’m paralyzed and cannot move because the pain is so bad.

[@stationaryworld1563]

I’m sorry 😞 do you happen to know the cause to your achalasia? .. I’ve been dealing with dysphagia for almost Two yrs .. after my gallbladder removal it got worse

[@valentinaplasaj8587]

Hey thanks so much for your story ❤

[@robinlevy8329]

YOUR STORY IS MY STORY!! I HAD THE SURGERY 2 YEARS AGO. WORKED GREAT FOR A FEW MONTHS AND IT WAS BACK AGAIN. IT SEEMS THAT SCAR TISSUE CLOSED IT BACK UP AGAIN. NOBODY WOULD EVER UNDERSTAND THE HORRIBLE PAIN THAT WE GO THROUGH. I WISH YOU GOOD HEALTH ALWAYS!!!

[@charlottehoda]

Thank you. I’m so sorry to hear that you are suffering and hope that you get the help you need as soon as possible. I wish you all the best ♥️xx

[@racheldahliamusic]

I've got scar tissue in the common bile duct too. Destroyed my entire life. 19yrs later still struggling.

[@mindywalters4993]

Hello Charlotte-Louise, I have had a number of digestive issues since 2004. First issue was diverticulitis. This caused me to have part of my colon removed. I had the operation in November 2004. I had my first of 30 or more bouts of pancreatitis in December 2004. I was finally diagnosed with SOD in 2007. I had a number of sphincterotomies. I have had three or four stints placed in the bible duct. I have had the ones that leave the body on their own and the ones the doctors have to go back in and remove. Although I am stilling having issues, the stints that the doctor had to remove, stayed in place longer and provided more relief. My one issue with the ERCP is that I get pancreatitis after every procedure. At this point I have chronic pancreatitis. My doctor mentioned to me at one appointment about possibly getting a pain blocker. There is a way that they can block the nerve that causes the pain. The pain will go away but you can still have the rest of the symptoms. I didn't have this done. Unluck yourself I still have my gallbladder. I have had 3 or 4 hedi-scans and my gallbladder works fine. To this day I'm still having issues. I get pancreatitis every couple of months. I also get diverticulitis about once a year or so. Due to all my digestive issues I have started to get C-Diff which is an infection that you can get after taking antibiotics. It's pretty nasty. Maybe ask your doctor about the pain blocker, it may provide you some relief. I wish you luck and hope you get better. If you have any questions or would like to chat let me know and I can give you my contact information.

[@kittylynx8911]

Omg tha k ypu so much for ypur story! I really thought I was going crazy I looked up everything with my blood work thinking maybe 8 have cancer that they can't detect this video helped me so much thank you 💓

[@sandrajenkins6162]

THANK YOU for sharing your story!!! I know EXACTLY what you've been through 😭 it's taken 2 yrs 4 months (but who's counting!) Of going from one Dr. to another...Emergency room visits, etc. I am scheduled for a Manometry in a few weeks. Dr. told me to think abt it-due to the risks...my answer: "Living with this pain is not worth living!" 😪 He then said...ok, let's do it! Good luck to you, and thanks again for sharing your painful and debilitating experience! ❤

[@charlottehoda]

Thank you so much for your comment. I hope you’re appointment goes ok, please let me know. Yes, anytime they explain the risks I say that nothing can be worse than my current experience. I wish you luck ♥️

[@sandrajenkins6162]

@@charlottehoda Hi! I hope you're doing better...is there any way I can send you a private message? If so-this is my email [e-mail] I had a Sphincterotomy (sp?) Last week and actually feel the same and sometimes even worse! 😭 I blv you mentioned it didn't help you. ??? Anyway...I hope you're doing better!!! ❤

[@Sgomez-mk9sn]

Your story is EXACTLY what I have been going through since 2019 😭😭😭 I had an ERCP done yesterday and had a stent put in and was also cut I’m hoping and praying that this is the fix to everything I’ve gone through

[@deepaknaithani2353]

How z situation now after this procedure... Pain still there?

[@heathermartinez7175]

Did it help! I had an ercp yesterday and was admitted for pain.

[@Sgomez-mk9sn]

@@deepaknaithani2353 it’s been a few weeks now since the procedure an have not had an episode so far . My stomach also doesn’t hurt anymore with every single little thing I eat anymore

[@Sgomez-mk9sn]

@@heathermartinez7175 it’s been a few weeks now since the procedure an have not had an episode so far . My stomach also doesn’t hurt anymore with every single little thing I eat anymore

[@chauhanrti1481]

@@Sgomez-mk9sn how are you... After 5 month? Does surgery help

[@suzzettecoffey8228]

I have been dealing with this since 1978. I was 25 years old when a passing Gaul stone lodged and backed up bile into pancreas liver and Gaul bladder. Basically my pancreas was digesting itself. My liver still has scarring from the back up and infection. I was in Hospital for 30 days. Trying to get my Gaul bladder cooled down enuf to operate. Since then Scar tissue build up has caused me problems ever since. I was called pill sealer, frequent flyer and other things I’m sure. Until after several years of agony an ultra sound tech saw the increased size of my pancreas duct and saw that it has been backing up enuf to stretch it. She knew how desperate I was to have answers. She told me “Im not supposed to say anything but I think I’ve found your problem but I’ll let your Dr tell you.” I broke down and bawled my eyes out. Those were the best words I’ve ever heard. Finally I knew I wasn’t loosing my mind. Since then I’ve had 5 ERCPs to put in stints in the common duct thru the years. I’m still plagued with chronic pain sometimes daily but not as severe as were the first few years. I’ve just had to learn to deal with it. FINALLY diagnosed about 6 years ago with SOD. BUT told basically there is nothing to do for it. No one really understands. I feel for you. I pray modern meds helps you deal better. God bless you and your doctors.

[@Fishnet_Fantasy]

I have only experienced one other pain like this when my SI joint is so out of whack I can't stand. Other than that this is the most horrific pain you can go through. I agree you can't get comfortable and it makes your heart race . I've had this for 10 years. No one knows what it's like to be in horrific pain and it's made worse by pain medication. I truly hope you feel better

[@charlottehoda]

I’m so sorry you’re going through this. I really hope you find someone that can give you some answers. I wish you all the best

[@racheldahliamusic]

Ask for endep and lyrica...

[@intuitivediane]

Great video. My GP when I went there initially told me it was from eating foot. Wtf. I got a new doctor and I was looking at reddit at so many pancreas and gallbladder tests. Then I found a post someone got me to do the HIDA Scan. This is how I got my information as well

[@sherrywyllie2163]

Very much similar story. I've had pain from sphincter of oddi from NOT eating. I've been on the floor of grocery store screaming in pain. Grabbed a banana and ate it and pain stopped instantly. Doctor said to eat when I'm hungry. I've had pancreatitus three times. It is incredibly painful. I started this journey 30 years ago. I've put on quite a hit of weight after menopause but it's either fast with pain or eat and be more comfortable. Good luck in your journey.

[@HabitualFixation]

ECRP?

[@Rene-uz3eb]

Makes sense because without gallbladder bile can't be stored, and if Oddi is closed during rest then bile will bottle up

[@angelinasharp76]

Thank God im not the only one who thinks a banana helps with the pain

[@amberbecker2605]

Wow, I am sitting in the hospital right now watching this and it is exactly my story. Except, they took my gallbladder out three days ago. The pain is unbearable. The morphine just makes it worse like my entire body is crushing. The radiologist diagnosed Sphincter of Oddi Dysfunction. Thank you for sharing your story. Knowing we are not alone. However, I am sorry you have to live with this. I know this video was a couple years ago. Have things gotten better for you?

[@intuitivediane]

Omg yes. That is the first thing they do in emergency to me cause they thought it was pancreatic. Once I went and they just gave my hydration and it was so good.

[@heathermartinez7175]

I am also sitting in the hospital right now after my ERCP and cutting of my sphincter. I pray it works. I have not heard too many positive stories.

[@lynnscott1511]

This is my store also I was just diagnosed with this and your video gives me hope

[@sorjamaria]

I most probably had a bile duct spasm because of pain medication (damn wisdom teeth to hell) and was really interested at what was happening because the gallstone type of pain when I've had gallbladder removed. Came accross the Oddi sphincter and now I'm thinking if that might be the reason why I have random liver entzyme rises. I've luckily had the really painfull "attacks" only couple of times, but atleast I now know to keep away from codeine and such. Thank you for sharing your story! Hope you've had some easing in ur symptoms.

[@mcontreras281]

Hi, thank you for your video it was very informative. And I am so sorry to see what you have gone through! I had my gallbladder removed a year ago but now am getting pain in the same area and near my belly button so just been trying to research what it may be. I was wondering if you ever got the Stent procedure done, and how you are feeling today?

[@janefilm12]

Hi Charlotte, I have had the same problem, not detailing here but have had 4 years of "journey" between different specialist doctors (US and Europe), testings... pain, pain, pain (and lots of $ spent for no result). Finally the root cause got revealed with and alternative diagnostic method, biorezonance in Hungary. I have/ had tiny helminths/ flukes in my gallbladder/ liver/ tubes, exciting the Oddi/ blocking the bile flow + some other protozoa in the bowels (it came likely from under cooked fish or sushi in the US or not perfectly clean water in my tropical vacation elsewhere) Regrettable the gallbladder is out already (this diagnosis came later, so maybe was in vain) still the Oddi was not functioning, lots of spasm. Treating the tiny parasites with frequency I got quickly better. Treating it with anti helmintic medicine I would not recommend, can be bad for you and they might also come back later. Traditional testing methods from stool/ blood will not show the invaders. This resonance therapy detect them and can eliminate them painlessly. If the sphincter is not opening the bile can flow back to the liver / pancreatic juice back to the pancreas and that is dangerous. In case you want to try the system I got diagnosed / treated with is called Sensitive Imago (now newer system called Sensitive Audit) . Painless, harmless method, great for many other "hidden cause" illnesses and for preventive diagnosis, in my view the future of healthcare. Also acupuncture and acupressure works great for the sphincter, if no parasites found, I would suggest to try that before any operation (concern about your pancreas a lot). Good luck with your health, hope your agony will end soon (mine did after 4 years) and can return to LIFE!

[@amrofan]

I am having similar problem and symptoms are almost identical. Liver enzymes were 20x normal and ER and surgeons were clueless. Endone (morphine derivative) made my gall bladder worse. Gall bladder working 10% of its capacity. Made my decision not taking any pain killers Milk Thistle relieved my pain and adopting a different diet of no carbs no animal fat is helping. Magnesium, zinc, vitamin E & C. Keto diet and loosing weight helped as well. Coffee triggered pain in the past. Stopped instant or coffee pods. Fresh ground coffee + French press makes me feel good (avoid coffee on empty stomach). Made final decision not to proceed wth any operation and not taking my gallbladder out. I have medical background and I can see that SOD remains an enigma to most doctors.

[@katebutler6436]

Good call not removing Gallbladder, most ppl in my SOD support group found it made the pain much worse.

[@jocelynfisher4428]

Yes coffee sets off an attack for me every time, unless I make it at home myself.

[@foobar1981]

Hi charlotte. Thank you for sharing your story! I’m 2.5 years into my journey with SoD, and I’m 4 stents, a sphincterotomy and about 7 hospital admissions into the process. I hope you have a resolution, and can continue with some level of normality. All the best.

[@racheldahliamusic]

Please see my comment... you need pain control therapies...I have all this too.

[@Mystomach]

I’ve just begun. Learning so much. I have incorporated more stretches

[@jocelynfisher4428]

Hi Charlotte....I watched your video on my kitchen floor at 2am bawling my eyes out. I have been to the hospital 8 times in 6 months and most of them have been in the past 2 months. I had my gallbladder out 3 years ago, but the pain only started 6 months ago. I feel like I am dying. The pain is worse, way worse than the gallbladder and kidney stone surgeries. When they asked me last time in the ambulance to rate my pain out of 10 I said 1000. The time before I passed out and last time they had to give me laughing gas in the ambulance. I had 3 nurses tending to me as I was screaming, biting my fingers, punching my legs, banging on the hospital bars, crying, moaning. Each time it is the same: diarrhea, I have been nauseous every day for months now, sweating profusely, hyperventilating, bright red on my face, shaking, dizzy, can't catch my breath and pain that is inhuman. I can't live like this anymore. I live in Vancouver Canada. I have had every test and all come back normal. Well I say you have not done every test, as I still am in agony. I found out today the GI specialist I was referred too says I don't need to see her. They have done every test. I called the office crying and begged them to have her call me for 5 mins. Also there is such a shortage of GI drs here that the wait can be up to 2 years. I will not survive that long. I am on strong meds very strong and sometimes they help a little and other times absolutely nothing. I know this is what I have. My pain is the top right hand side and I had my gallbladder removed. The last time the ER dr saw me I was severe. She told me when I was feeling better that she doesn't remember ever seeing anyone in so much pain. She said it saddened and concerned her. Then she sent me home. In the past 2 months I have had to be admitted into the hospital for 6 days both times. Help me please. Are there Drs that specialize in this? My brother is a Dr and he said they have to be sure of the diagnosis before starting treatment. I tried to find you on instagram and couldn't. I tried _cljxo. Oh and the dr treating me in hospital told the GI specialist over the phone that he thought I had SOD and they said no it is too rare. It has a name so it is not that rare. Google stories about lots of people all over the world who have it. I am so incredibly frustrated and tired. Also I have been sleeping a lot recently, unless I am gaining an attack and then I can't sleep at all. I have a permanent hospital bag and clothes ready to go if I need too. Thanks for this video. Much appreciated. I hope you have relief soon.

[@meyersonfire]

I had my first episode since one sent me to hospital about 14 months ago. Tried probiotics, then olive oil, then the massage. Peppermint oil inside and out. Bending over bed to stretch out back. Finally took some Christophers Gas-e tablets (for enzymes). Took about 10 mins to get into system. Used some magnesium deodorant from the sweating, and finally it broke. I stayed free of pain by going on a more alkaline, whole food plant based diet last year. But the holidays came and I started cheating--more sugar and bad fats. Gained some weight back (I'd lost 10 pounds). Cleaned up a bit, then Valentines and Easter and finally Mother's Day came--I'd bought myself treats. I'm sure sugar has the most do to with it, surely the bad fried fats don't help, either. So, this and stress really did bring it on today. I'm convinced the enzymes were the most helpful quick fix. But the best remedy is to stay with clean eating--whole food plant based with olive oil, avecado, flax seeds. get away from sugar and all processed foods. God bless

[@CapturedbyBongo]

Could have been me, making that video. Thankfully, I don't get the spasms very often - but I know what triggers it, and opioids are the number one thing. I carry in my bag my spasm first aid kit - paracetamol, mebevorine (an antispasmodic), and some clove sweets (cloves make your stomach go numb!). Ginger cordial is also excellent at helping to reduce the pain, plus a hot water bottle! Hope you get yours fixed soon :-)

[@racheldahliamusic]

What is membovorine? Had anyone tried creon?

[@tavitapup8141]

Would also like to know an update on your end and after the surgery I also have the same symptoms and it “maybe” sphincter of oddi...so sick of emergency drs telling me that the symptoms are indigestion etc etc. sick of taking pain medications as well geez the battle never ends. I really hope all of us suffering from this and worse can find a cure as soon as possible

[@Frostprincess777]

I was just diagnosed with this. It's a horrifying pain and it can come out of no where! It's severe pain by the surgery site and it radiates upward. The pain is so bad, I fall to the floor, scream and cry in pain. :( For me, Cymbalta and pantoprazole has reduced the amount of attacks. I used to have a bad attack once a week and now I have a bad attack once a month or less. Good luck!

[@shermac8463]

I have this, too, Charlotte. I’m sorry you’re suffering so much. My story is remarkably similar to yours. Had my infected gallbladder out in June, 2019 and suffered even more horrific pain just 2 days after. Was so looking forward to getting my gallbladder out and returning to my active life. I live in a big city so was very fortunate to get diagnosed rather swiftly and wasn’t disbelieved or gaslit by the medical profession. Really sorry you went through this. I was diagnosed with SoD type 1 in September, 2019 . I was an unlucky one and got acute pancreatitis from the diagnostic procedure which was an endoscopic ultrasound. The surgeon who performed the ultrasound was careless and kicked to pancreatic enzymes during the procedure. Needless to say, I get these horrible fevers that last for days after my pain attacks and wonder if you get those? They make life much more debilitating. I’m also trying to figure out food triggers and wonder if you’ve found any? I don’t do Facebook so have little contact with other SoD sufferers. It’s important we don’t lose hope. I understand it can take some of us awhile to sustained relief.

[@laharahpaige5349]

Hi, I just wanted to say i have this too and experience the fevers that spike up to 103 then back down to 98-96 that last for DAYS at a time

[@shermac8463]

Dominique Steeves thank you Dominique. Mine can go up to 101.5, which is high for me because I have a low basal body temp, then a low grade one for days. My fever broke today after going for 2 weeks. I’m so sorry you’re suffering with this, too.

[@mmq9886]

Dominique Steeves omg is this why I constantly run a low grade fever and it spiked after eating ?

[@racheldahliamusic]

Some very specific foods and drinks trigger us all. And they are all bizarre and different. Is you have a fever with the pain it could be pancreatitis again pls go to e.r? It may also be partial liver blockage which can lead to choliangitis, infected bile duct.... deadly if not treated.

[@michaelelling5439]

Going through a similiar experiance and have self diagnosed to SOD. I took them 5 months to land on gallbladder. Had the same gallbladder test - mine was 15%. Gallbladder removed 5 weeks ago. Pain was worse, thinking post-op. Now 5 weeks out and what I previously described a gallbladder pain is still there, but worse.

[@angelaobyrne4463]

You have SOD. Get help. I endured 15 years of chronic disabling pain. Just had surgery last December. It worked but I have lots of work to do with the brain body as the pain is triggered now by stress.

[@charlottehoda]

Update: 13.06.2021 Unfortunately there really isn’t much to tell, due to Covid everything was put on hold. I have recently been contacted about a pre surgical assessment in June, but has since been moved back to end of July. Things that have helped: Taking Vitamin D daily, stopping my Progestogen only Pill (I believe this has had the largest impact). I have also changed my diet to more meals of smaller portions rather than larger meals and no eating after 6.30pm. Im really sorry my update wasn’t more helpful and thank you so much for all of your support. I saddens me to see the awful comments about my appearance but I guess that’s the world we live in now ♥️

[@racheldahliamusic]

See my comments hun.... we are living near the same life. I can help!

[@jennyvenegas1333]

@@racheldahliamusic can you give me any tips for SOD please, what helps, what triggers it, any advise please

[@irenepeacedove]

You are gorgeous, people are awful. Sending you love

[@intuitivediane]

Hydration is so important and not heavy meals I found helps me.

[@intuitivediane]

Also a heat pat really is soothing.

[@kelliec2885]

Been living with it for 12 years now. Been on anti-spasmodic meds for 10 years and while I do have break through issues, my life has been changed. I can live normally now. Try the meds, they can change your life. Literally.

[@almaalmanza6072]

Waiting to get diegnosed to get on meds

[@Cakebossmom2]

I hope you are doing better! I've lived with SOD for 10 years. I've never had any of the surgeries/procedures because I'm afraid of the pancriatic consequences. I've had decent relief from a host of medications. It took 6 months of being in debilitating pain to get diagnosed. Being acused of just seeking drugs, an adict, or it being a mental disorder! It is degrading to have doctor after doctor not believing you. Keep your head up. I wish you health and a pain free life.

[@viridianamorales359]

Hi Patricia, how do you deal with the pain? Are you reducing or eliminating some foods along with medication?

[@Cakebossmom2]

@@viridianamorales359 I avoid my triggers as best I can. I find that if I’m dehydrated even a little I get more attacks to unknown triggers. I have medication but only use when an attack happens.

[@Cakebossmom2]

I don’t deal with the pain well. I take hyoscyamine when it happens, but a few times it didn’t help. In those cases I drink lots of water and have some crackers and ride it out. It sucks.

[@viridianamorales359]

@@Cakebossmom2 thank you for sharing your experience, I also avoid all my triggers but my diet is very restrictive. This makes me feel tired most of the time.

[@jennyvenegas1333]

Hi ladies, I’ve just been diagnosed with SOD, I had my gallbladder removed 4 months ago, and this pain started two weeks after it. Can you give me any hints of what triggers the attacks, I have attacks every other day, I’m so exhausted of it. I’m scared or ERCP I would rather try with anything else before considering ERCP. Thanks

[@carmengubb6454]

Really would love a update on how you are going

[@lostmagicofdisney]

This was me. I had the gallbladder removed, doctors thinking gallstones were causing the problem. Only after the gallbladder surgery (and still having attacks of pain) did I happen upon some information online with an odd little side note about the sphincter of oddi. Dug in further for more research and took my data with me to a gastroenterologist. He confirmed my issues to be sphincter of oddi spasms and gave me a RX for antispasmodic medication. On the occasion I have a flare up, I take the meds and I'm good to go. ALSO--narcotics feed the beast. They make the spasms worse (in my case).

[@katebutler6436]

Fb has great support groups for SOD. In case you ever need advice or feedback on some symptoms or pain or things that might help. Js. I have it as well, I strongly suggest to anyone with SOD to look for a support group. They can be so helpful for each of us. Good luck to you on your journey.

[@racheldahliamusic]

Slow release narcotics are the safest option.

[@HabitualFixation]

I’m having the same problem atm. Had gall bladder removed but have suffered weird pains since. Pretty rare for me but they’re looking into it. Had the scan and am getting a ECRP as soon as possible. Thanks for sharing. Ghost pains aren’t fun, hard to diagnose for sure

[@meyersonfire]

how did the ECRP go for you? I just had mine, and now worry about scar tissue, but am taking Christopher's Complete Tissue to help avoid that.

[@HabitualFixation]

@@meyersonfire yeah went well. Had a high temp that night but came right. The down side is possible pancreatitis for which I think I narrowly avoided.

[@user-sz1rj3wm7d]

After severe pancreatitis, gallbladder surgery, pain and more pain, trips to my GP and to the ER, my ER doc said today that he suspects SOD and is sending me to a gastroenterologist. I've been going through the same things - images look fine, blood work hasn't shown anything definitive since the pancreatitis - so it's "all in my head." Thankfully today's doctor knew about this disorder. I'm afraid of the possible wait I will have to see a GI doc because the pain does get very disabling at times. Narcotic pain killers (oxycodone, percocet, and dilaudid) are the only things that help but I've experienced a lot of complications from those as well. It's very scary. I've been sick for two months straight - spending over 95% of my time in bed. I suffer from anxiety, depression, and PTSD as well and everything is being triggered and I haven't been dealing with it very well. It was a relief to finally get a direction today and it really helps to hear your story. Thanks.

[@donna1390]

I have this too. My best advice is magnesium in powder form. Magnesium Capsules as a preventative. The worst pain ever.

[@travonus90]

i had my gallbladder removed last august 2020 felt great thought i was back to normal 6 months later the same pain and nausea has come back. Been to A & E twice now they think i'm joking, paying for a second opinion now and hopefully ill get more tests to see if i have this sort of issue. It's not fun at all and with covid all of our ops and tests are put on hold. i hope you get sorted soon!

[@lostmagicofdisney]

This was me. I had the gallbladder removed, doctors thinking gallstones were causing the problem. Only after the gallbladder surgery did I happen upon some information online with an odd little side note about the sphincter of oddi. Dug in further for more research and took my data with me to a gastroenterologist. He confirmed my issues to be sphincter of oddi spasms and gave me a RX for antispasmodic medication. On the occasion I have a flare up, I take the meds and I'm good to go. ALSO--narcotics feed the beast. They make the spasms worse (in my case).

[@Emmareads456]

@@lostmagicofdisneywhich medication do u use ? Name pls ?

[@lostmagicofdisney]

@@Emmareads456 Hyoscyamine sulf 0.125 mg tab HTH

[@AcesterTV]

I'm scheduled to get my GB removed in 10 days. I've had a couple ultrasounds which were negative for stones, and I had a hida scan for a very low functioning gallbladder. Most of my pain is on the right side where the GB should be, but I get pain on the left side too. I'm afraid of it turning into SOD after I get the GB out. NGL hearing your story I started sweating profusely and felt like I was going to pass out lol. I hope you're feeling better

[@AcesterTV]

@@tonyapayne478 yes much better now! I still get some strange aches occasionally but nothing close to what I used to. I can pretty much eat anything I want, too.

[@racheldahliamusic]

Left side is pancreatitis, so is the feeling of suddenly feeling faint and weird, indescribably ill....

[@naomireardon6487]

I am currently going through spasm now...n over it....Dr is doing an excellent n both at end of month....lost weight, not eating, in pain more than not, went to ED twice.....trying to tell you mum isn't reflux so bit stressed out at the moment...as u say people do not understand it

[@vennesakelly6863]

I have been dealing with this pain since 2015. I've been misdiagnosed so many times. The pain from SOD sucks! The "referred pain" is felt everywhere. I"ve had 7 mri, 5 ct scans, enough lab work to drain me dry lol. Dr. thought my shoulder blade pain was from my neck so they put in a metal plate. Now I have neck pain too. On pain management. There are classes of Sphinter of Oddi. I'm level III ( normal labs). I'm in constant pain and have flare ups about every week that last for a few days. The sphinter won't open and pancreas juices back up and swell causing pain and overall feeling sick and dizzy. I'm so over all this.

[@racheldahliamusic]

Can relate!!!

[@aroundme578]

Go for ultrasound indoscopy

[@fatihderingoz6983]

Same as me. Did you try ERCP (Sphincterotomy)? doctors said i have a 50% chance of recovery with this process. But side effects scare me.

[@racheldahliamusic]

Tooķ 13 yrs for mine to be finally suggested as a diagnosis That's a long time cos pain stops time and makes you feel like you're more alone than you could even imagine and no one hears your voice when you try speak and no one sees in your eyes how much life disappears from you when pain is in the driver's seat!

[@tavitapup8141]

I’m so sorry for what you’re going through! I pray for you my sister and I hope you are getting better now!! If I may ask, how are you coping with it now?

[@emmiloub8699]

I was told it was heartburn so many times I was like no it's not, in the end I got told it was my gallbladder had my gallbladder out 12 years later I have just had major open surgery of a trans duodenal sphincterotomy.

[@racheldahliamusic]

Are you fixed?

[@emsjen]

Small fyi... Abdominal pain is also a major symptom of a heart attack in females also. That's why a lot of women that go in with GI/abdominal symptoms will typically assessed to rule out heart 1st

[@Nolovelost0034]

That’s so crazy because I always knew something was wrong after my gallbladder was removed and I did so much research and found out that this was causing my identical chronic pain. It lasted for like almost a whole yr after the GB surgery surprisingly. It stopped but so far but everything you explained I felt completely 🥺😫.

[@benjamingoldstein6298]

@@smileok3723 same here....

[@jasmineyanez3112]

What did you do to help stop the pain ?? Plz plz

[@jasmineyanez3112]

@cece Eva plz

[@Nolovelost0034]

@@jasmineyanez3112 nothing stops it really, when I first start feeling the attack come I drink ice water but other then that the pain still comes

[@jasmineyanez3112]

@@Nolovelost0034 okay thank you I’m going to monitor mine I got it like a week after gallbladder removal the pain was so bad I was like there’s no way this pain is this bad so I just laid in bed scared to move but I haven’t felt it yet again if I do I’ll try that ice cold water, also one girl said a banana helped her and I don’t even like banana but I ate one when I felt that pain and it helped me weirdly ! 🙏

[@berthamiles6507]

update video? Oh I hope you are okay! Thank you for sharing! I'm trying to figure out what is wrong with me. The first bouts of pain had be thinking I was suffering a heart attack. I look up Gallbladder symptoms and doesn't quite fit. The pain can sometimes present like a heart attack that chest pain, then up the jaw down the arm...etc....then I take ibuprofen...helps... Then pain came back incenter of my back felt like someone put a sword thru to my Brestbone (different pain than before). Then it was the lower back that radiated and got worse. Then it was all of my back lower and upper......etc..... every time leads to me vomiting because of the pain. And then it goes away. I can't figure it out, but it hurts worse than anything I have ever felt. Then the next day after episodes I am fine. And like you, people say it is stress.....but how can stress wake me up in the middle of the night and for hours I suffer until I puke. I cried with you. I hope you are okay!

[@luismiguel.b]

Sorry to hear the struggle you are having. How was your operation?

[@charlottehoda]

Thank you - unfortunately still waiting due to the Covid delays. I hope in the coming months I may be able to have it

[@michellehinton7206]

SOD is the worst pain I have ever experienced! After multiple specialists and tests that lead to panceatitis, I was prescribed Hyoscamine sublingual. It stops the attack (for me) within 15 minutes!

[@candiceh8957]

I feel like I might have the same thing but I’m not sure. Cuz I had my gallbladder out a little over a year ago and I’ve had a couple times where I’ve had pains very similar to gallbladders attack. It’s not as intense as gallbladder attack but it still hurts. I think it helps to drink Apple cider vinegar with water. It should help the liver to stop the flow of bile maybe. It takes 15-20 mins to help.

[@charlottehoda]

Thank you for the advice lovely and good luck on your journey xx

[@HabitualFixation]

Ask for a nuclear scan possibly

[@luciousalpaca6481]

I described the pain like if flaming shards of flamming glass were being pushed through my abdomen. I shook and trembled and burp over and over again. My body was soaked in sweat and my heart would pound. Even the muscles in my thighs were twirching when the attack started. It was wild and terrifying. Back pain and even burning in my joints. And it mostly happens at night when im sleeping. But occasionally during the day. And after my attacks pass i will get horrible heartburn for a short time. I had my first attack after taking a opioid medication 3 days after having my gallbladder out.

[@jocelynfisher4428]

Wow sounds like me: dripping in sweat, hyperventilating, nausea, I also get twitching in my arms and legs, dizziness, I also get right red in my face, vitals all elevated, diarrhea, vomiting and pain unbearable. Hang in there....

[@melodymelomaniac]

I am convinced I have this as well. Have you tried TUDCA at all?? It's supposed to be amazing for bilary issues like Sphincter of Oddi dysfunction

[@almaalmanza6072]

Have you gave it a try

[@rachelphillips4648]

Have you tried tudca? I’ve read about it and bile salts may be helpful but I’m afraid to try.

[@melodymelomaniac]

@@rachelphillips4648 I have tried both TUDCA and use bile salts almost at every meal. Bile Salts have been incredibly helpful for me! I get Bile Acid Factors from Jarrow and take it with almost every meal. TUDCA seemed to be a little harder on my gallbladder for some reason and cuased more pain than it helped

[@aliciamoon9816]

After watching your video, I consider myself lucky that I only get these attacks when I eat foods high in fat or that are highly greasy, so rarely ever if I avoid them. I hope you're doing better now. Have you had the surgery?

[@rachelheap7490]

I was diognosed with SOD yesterday..im still scared of being treated like a liar or drama queen because thats how ive been made to feel in the past about the pain xx

[@lisasammlar4537]

I have experienced almost everything you talk about. I had stents put in my pancreas 2 years ago and it helped for a while but now the pain has returned and we are considering removing my gallbladder but it still might be the sphincter of Odi again…the whole process is indeed frustrating. I too look well all the time but no one sees me writing in my bed at night.

[@odinsvalkrie]

I've been managing mine with Lyrica and Pantoprazole if that's any help to you? Norflex helped reduce muscle spasms. And Palexia is an opiate that doesn't cause spasms for me. Wishing you the best and I hope we can find the light at the end of this hell hole disorder.

[@meyersonfire]

I've noticed I don't have episodes when I stay away from fried food, sugar, chocolate--my favorite things, lol. I've been doing Dr Christopher's liver/gallbladder formula along with lower bowel formula, plus a low-fat, whole food plant based diet. I also suspect that taking Christopher's Complete Tissue can heal the sphincter, which I'm working on, because I had the sphinctcotomy just a few days ago. Praying no scar tissue. God bless

[@odinsvalkrie]

@@meyersonfire ooo update us on how you go! I'm trying to do the low FODMAP diet but it's definitely hard 😅

[@odinsvalkrie]

@@meyersonfire Wishing you the best! I really hope that sphincterotomy works for you. I've been trying low FODMAP but it's hard ^^;

[@pauladime6307]

I’m sad Charlotte hasn’t added to this video! What has happened Charlotte? Did you have the surgery? Did they clip your sphincter?

[@morganophelia5963]

I think I have this it sucks 😔... I had 2 gall bladder surgeries , one in 2014 cus my gall stones got stuck in my bile duct.. then the other in 2017 cus my gall bladder got severely inflamed and infected. I believe they removed my gall bladder then...well ever since then I get charlie horses in my stomach right in the spot I had my gall bladder surgeries at. It feels like my intestines are twisting around in there!! 🤕 I don't notice if I get it after I eat but I do get these "charlie horses" if I cough or sneeze or laugh real hard or long or stretch a certain way. Oh also nice to meet you Charlotte Louise my daughter's name is Charlotte too she is Charlotte Yvonne :)

[@christinabatchelor2229]

My daughters specialist thinks she has this. Had gallbladder out when she was 17 she is 25 now. Over the years had attacks only relieved by vomiting which is always bile. Whilst pregnant she had no symptoms and could eat what she wanted. Little boy is two now and for last year has been getting attacks over last couple of months getting 2-3 attacks a week. Going to have endoscopy to check no other causes as she has bile reflux and slow motility. Breaks my heart seeing how much this is affecting her life so watching your video I can understand how this also affect you so much. Wish there was a permanent cure for this awful condition. Wishing you every success with your operation x

[@shermac8463]

I’m so sorry your daughter is dealing with this. Can’t imagine how difficult it is trying to care for a toddler with this amount of pain. If she has slow motility, there are lots of things that can help her. With SoD it can take time to get symptoms under control, important not to lose hope. I had attacks everyday this summer after I had my gallbladder out. I was also diagnosed with slow motility-which I think is cured now. I don’t do Facebook, but understand there is an active SoD group on there that may be helpful if you or your daughter wish to join. Don’t lose hope.

[@christinabatchelor2229]

@@shermac8463 thank you. What did you find helped you was it medication or did you have an operation

[@shermac8463]

Christina Batchelor I haven’t had an operation, they performed an endoscopic ultrasound In September and I was one of the very unfortunate ones and got acute pancreatitis from it so I’m trying to manage it doing an elimination diet. I can’t have invasive procedures due to risk. The doctor was likely at fault but still not willing to risk it. I do go to the ER when attacks are bad and given IV dilauded, which works differently than morphine which can make symptoms worse for some. I can’t tolerate morphine, but dilauded works fine and stops the attacks instantly. I don’t use it often. I have some tablets at home that I use very sparingly when I get an attack and only go to the ER when the tablets don’t stop the pain. So I’d say I use hydromorphone twice a month at most and they aren’t worsening my SoD, this isn’t considered chronic use. Everyone is different though. I haven’t found levin or doxycycline to help so I’m going to my GI specialist tomorrow to see if I can try some calcium channel blockers. I don’t have attacks as often as this summer, but still once or twice a month followed by days of fever. When I’m well I forget I have SoD then I eat something, last trigger was chocolate ice cream and I got an attack followed by 2 weeks of fever and fatigue. Your daughter can get better. I am better than I was this summer. I’ve heard some say it can take some many months until you stabilize. Glad your daughter has you,

[@charlottehoda]

Hi Christina, I’m so sorry to hear that your daughter is going through the same thing. Would be great to chat to her if she’d like and I can share certain things that I do or have done in the past to help relieve the pain. They may not necessarily help but we could support each other. My Instagram is @_cljxo

[@brooksallie4148]

Literally so glad i sAw your comment i was just pregnant and all my symptoms went away and i’m 5weeks postpartum and the pain has come back

[@archangel1527]

I had an ERCP one year ago and no pain since. The Dr had to cut open my sphincter of Oddi. I still have my gallbladder. The pain prior was terrible. My bile and pancreatic ducts and gallbladder were all dilated because bile and pancreatic juices could not flow into my intestine.

[@emsjen]

Don't see an update yet... I was diagnosed in 1018. I had never heard of it so I researched and all that. When my drs started talking about stents and sphincterotomies I was excited for a treatment... then within a week and a half or so, I had THREE cardiac arrest calls, all women, all with recent stents, ostomies, or even just the manometery with the device inserted into the duct (as opposed to calculating with MRI/MRCP). Im on here again looking for any ideas on how I can help myself. I have been without ins for almost a year but was able to manage on bare minimum meds and dr visits. As of May, all of my reserves are gone and I'm having 1-3 full blown attacks per day. I hope you have a success story, I wouldn't wish this on anyone

[@katebutler6436]

I'd suggest joining a support group for SOD, there are a few on FB. They may be able to give you helpful information on how to deal with pain and symptoms from home. But something I've seen help a lot of people is following a bean diet. Eating a serving of beans a few times a day to help bind the bile naturally so that it's easier on your digestive system. I've heard it can help as long as you keep up with it. I hope this was helpful.

[@maryc3084]

Charlotte-Louise Jones when you have an episode of pain, does it feel like squeezing pain that comes in waves where its intense,, then eases over and over again? I think I have SOD.

[@beautylova6993]

It's pain like no other. I thought I would die, my daughter watched me through one. She was definitely scarred. Had my gall bladder out then if I took codeine or some pain killers. The attack would happen.

[@michaelwakeford8703]

Codeine sets me off exactly the same as described. I’ve had gall bladder out for 8 years and recently had gastric sleeve. Alcohol can trigger these episodes for me as well. I don’t even know where to get a proper diagnosis and nothing I read had been to promising with treatments

[@megannelson4147]

Mine is triggered if I am given morphine

[@Elvan2403]

I have never ever watched something before as if it was me talking. You have described my situation exactly and i have had every single test you have had, i thought the same thing about the mrcp, i also stopped going out, lost the quality of my life and only go out with people who can take care of me if i get an attack. I cannot eat anymore. I suffer daily with the attacks and more. I have sod type 3 and i have been dismissed by endless Gp’s and 4 surgeons and was told to see a pych. I have been told today by a GI doctor that there is nothing i can do. Can you please connect with me? I would like to know how you are doing today? I cannot take this another day. Never in my life wanted to hug someone so much ❤️

[@jocelynfisher4428]

Boy I know how you feel. I am tapped out. I actually have a hospital bag ready to go at all times in case I need to call an ambulance It has been a week since I was in hospital, but in the last few months I have been 8 times and 2 of them were 6 days of admittance. Like you I do not want to live with this anymore. Can I hear your story? I am interested to know. Jo

[@JK-eb3zu]

In 2010 had GB after going to ER with N/V. Never really issues that i knew of prior. 4 days after surgery I had my first SOI attack. I thought I was having a heart attack. Tests tests tests. Given nitroglycerin which made me feel awful. Realized peppermint oil in with nitro spray. Now when I feel the attack coming on i rub peppermint oil all over my abdomen and inhale from hands. And have whoever is nearby stick elbow in upper right shoulder blade area where my pain refers. Works same as nitro without the side effects. Know red wine triggers me. I was also suspecting opioids which I take prn. Will have to monitor for that. Great info in the comments. I have no trust in allopathic medicine after last few years so looking for more holistic ways to treat my various issues. Cheers to better health for everyone.

[@JK-eb3zu]

Wanted to add also... Ive cleaned up my diet, lost weight, and gotten off almost all rx meds. My attacks last from 15 minutes and done to off and on for 4 hrs. And completely wiped out afterward. No one i know has this so everyone freaks out. I had one it work last week... No one had seen it happen and they were all on me to go to ER, especially my boss. I work at hospital. I was like please back off... Ive had this 13 years, I know what it is, I know how to treat myself. Im not wasting money and time on doctors that know little.

[@BAHDK]

ty this is helping me..................im about to ask for surgery for gallbladder and sphincter

[@gabrielleeddis4692]

Welcome to the club

[@verlindaallen3335]

Honey I understand how you feel. Sending hugs. Why. If doctors can't find Anything they assume it's mental. Unexplainable stomach ache pain ....so then they think your wanting to get pain medication. 😒 3 years I've suffered and no one knows. Going to a new gastrointestinal doctor soon. So tired literally from pain every single day of my life. If it weren't for God idk what I'd do .

[@brandymoreno382]

Are pancreatic and liver enzymes always elevated with Painter of Odie? My labs are normal but I’m having pain under my right rib and it’s mild but it radiates to my back. Had my gallbladder out last year.

[@BugOutBetter]

I have this as well

[@stephaniejoseph8023]

Would love an update video

[@AK2HI]

Could you pinpoint exactly where it is in your body? I can point exactly to a specific spot that it starts at and then radiate out

[@debbiesouthard5504]

Have you had the surgery yet? I also have sphincter of odi dysfunction since 2008. I had a sphyncterotomy in 2008 but just got out of the hospital last week because the pain had come back and I was vomiting green bile. 🤮

[@zacksingleton2419]

Did it ever get better? Had mine out 3 weeks ago and am starting to experience a mild version of this

[@mindywalters4993]

When you have gone to the hospital did they check the pancreatic enzymes (lipase and amylase)?. If these are elevated you are having pancreatitis. I have issues with morphine also. It doesn't work at all. What I found that works for me is dilaudid.

[@mrandmrscrosby4271]

Not all SOD cases have elevated levels of pancreatic enzymes

[@angelinasharp76]

I also had my gallbladder removed on April 20, 2009 and then the pain started from the sphincter of oddi.

[@jessie21498]

Thank you for sharing, as I sit here with tears in my eyes feeling like it's me talking. I got my gallbladder removed in June and the next day I knew something was wrong. They gave me oxycodone and I kept saying to myself idk but every time I take this I swear my pain gets worse. I really thought I was going crazy. I also kept saying this feels worse than gallbladder pain. Even though I knew in my gut something was wrong I kept making excuses at the same time. I went for my follow up 2 weeks later and explained to the dr my symptoms but he said it was my body healing. My legs hurt my back literally everything. He sent me to er to rule out blood clots in the legs. The er referred me to a orthopedic. The orthopedic referred me to a GI, rheumatologist, endocrinologist, neurologist and 2 others I can't even remember. Thankfully I wasn't referred to a shrink. However I am on antidepressants and anxiety medication because at times I thought I was loosing it. Especially when I describe my symptoms to all these specialists and they look at you like you are making it up because "YOU LOOK FINE" . FINALLY in September because I was not giving up I kept calling my doctor and telling him something isn't right. He ordered a test called HIDA SCAN. And there it was this rare disease that not too many doctors are familiar with. While I knew something was wrong I never imagined a rare disease. I was able to find 1 doctor who treats it, thankfully. There's always a light at the end of the tunnel 🙏🙏.

[@charlottehoda]

I’m so happy that you finally found someone that can help you, and so sorry you had to go through all of that. I wish you all the luck and love I can give xx

[@jessie21498]

@@tonyapayne478 sphincter of oddi dysfunction. Still going to doctors and Still no accurate diagnosis yet.

[@melissaburgess9153]

I haven't had my gallbladder out but this pain has been going on for me for six years they cannot give me an answer but all they've ever done is endoscopy colonoscopy with absolutely no results or answers. You described my pain so well, so what do I need to do next I'm nauseous just sitting here

[@melissaburgess9153]

❤❤❤❤ Charlotte thank you so much !! My last 3 gastro's have not even mentioned the sphincter to me before.

[@AK2HI]

Please tell me who is this doctor maybe he know someone in the US.. Same damm story here i need a doctor who listens. I'm in Alaska so good luck finding someone here. You 100% described me perfectly. What pain meds work if any i don't know what to do. I don't instagram or anything sorry I finally have hope though I'm not going crazy

[@cazb4421]

My gastropsy doctor said I had reflux until the hospital saw me in pain. They knew after 9 months of pain and throwing up each month. There was something else wrong. They did all the tests and I was diagnosed with schinter of otti. The hell I went thru I wouldn't wish upon anyone. My surgeon said even if I take it out the same thing would happen. I would get phantom pain so I decided not to do the surgery.

[@almaalmanza6072]

How are you dealing