I have Sphincter of Oddi Dysfunction or SOD, a female-dominant health condition that caused me to give up a successful career as a not-for-profit director, lobbyist, and advocate. I could not parent and spent a year vomiting, in severe pain, and on a feeding tube. I was 90 pounds and the emergency and hospital rooms became my second home. On several occasions, my gastroenterologist said postpartum depression and stress were causing these extreme symptoms. As I was dying I was told to shake it off, just eat, and reduce my stress. Not only was I very ill, I was blamed and shamed for being ill. Though my tests were normal, I knew my body and this was definitely not psychological in nature.
Fortunately, a surgeon friend of my mom’s suggested I be tested for something called Sphincter of Oddi Dysfunction. Having never heard of this disorder, I scoured the Internet for information and bingo! Everything finally made sense.
Gallbladder Removal and Sphincter of Oddi Dysfunction
The year was 1998. I had my gallbladder removed and soon after developed a severe and constant pain in my right side under my rib. After a few tests proved negative results, I was diagnosed with IBS and given a medication that did not work. Since pain medication barely touched the pain, I went without and learned to live with it. Avoiding certain food triggers, breathing exercises, and mindfulness/awareness techniques helped me function each day.
Fast forward to September 2011, three months after giving birth to my third son. I could not keep food down. The pain shifted to the area below my sternum. Later identified as pancreatic pain, it was searing and relentless. Weight was flying off of my 135 pound 5 feet 4 inch frame. For a year, I suffered; until I took matters into my own hands. I traveled from New York to the University of Minnesota to put a name to the mystery condition slowly killing me. There, I had an endoscopic retrograde cholangiopancreatography (ERCP) with manometry—the gold standard diagnostic test for SOD. Sure enough, the doctor told me I had a terrible case of SOD. The frustrating part of this was my doctors back home could have performed this test but insisted on the psychiatric diagnosis.
What is Sphincter of Oddi Dysfunction?
So what is Sphincter of Oddi Dysfunction or SOD? SOD is a condition where the sphincter valves controlling the flow of bile and pancreatic fluids do not open and close properly. SOD occurs most frequently following gallbladder removal (post-cholecystectomy). Symptoms include (but are not limited to):
- severe upper right quadrant pain
- pancreatic pain
- nausea
- vomiting
- diarrhea
- constipation
- malnutrition
- unintended weight loss
Sufferers often go undiagnosed or misdiagnosed as it is common for SOD patients to have normal bloodwork, scans, and procedural workups.
SOD and Women
SOD is most prevalent among women for unclear reasons. A culmination of studies published on the NIH website estimate this prevalence to range from 75-95%. However, surveys conducted in 2013 and 2014 by the Sphincter of Oddi Dysfunction Awareness and Education (SODAE) Network showed an astounding 98% of SOD sufferers are women.
I oversee The Sphincter of Oddi Dysfunction Awareness and Education Network (SODAE Network) website, Facebook page, and support group. As such, I read and listen to countless stories of doctors telling SOD patients not only that their symptoms are psychological, but that SOD does not even exist! Patients either exhaust their savings to travel far and wide to see a doctor who will help them (yes, there are some fantastic SOD doctors out there) or, those who cannot afford that option, are left with no treatment options and in time deteriorate physically and mentally.
Confusion amongst Physicians: Is Sphincter of Oddi Dysfunction Real?
At the center of this “SOD is not real” movement by some gastroenterologists is the National Institutes of Health study—The Evaluating Predictors and Interventions in Sphincter of Oddi Dysfunction (EPISOD) study, which I happened to be a participant in. The treatment at the center of the study, sphincterotomy, showed it did not relieve symptoms in all participants—not that SOD could not diagnostically be proven. The sphincter is cut so it will provide greater access for fluids to flow rather than get backed up. I had this and it did not work for me either. Two months later I had a transduodenal sphincteroplasty–a major abdominal surgery to sew my sphincters permanently open. I am happy to say I am doing well for the most part and consider myself in remission.
Theoretically, if the treatment did not relieve the patient’s symptoms, then the problem could not originate in the sphincter, which was now cut wide open. This makes absolutely no sense. Would we say other diseases measured by symptomology and/or diagnostic methods do not exist when a treatment is found to be ineffective, i.e. cancer, multiple sclerosis, Alzheimer’s, etc.? As we know, many diseases cause secondary conditions. It is quite possible SOD began as a primary condition, but as it precipitated (it often takes years to obtain a diagnosis), it spawned secondary issues like ductal spasms, nerve and/or visceral hypersensitivity, pancreatitis, malnutrition, or gut dysmotility. The original disease did not change. It was always there. However, once the sphincters were cut, the body still had these secondary issues.
Sphincter of Oddi Dysfunction is Real
Rather than spending valuable time recklessly slamming women with SOD and questioning SOD’s existence, researchers, policymakers, and the medical profession should be investing in women’s health, funding research to identify the cause of this condition. By learning the exact nature and cause of SOD, we can then move on to identify and develop effective treatments and preventative measures. Of particular note, is the need for investigating the possibility of a genetic and/or hormonal cause to SOD, since so many sufferers are women. No such study has been initiated, outside of a prairie dog study conducted in 1994 determining estrogen inhibited sphincter of oddi motility. That is a narrow bit of research on which to base medical opinion.
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Biliary_system.svg: Vishnu2011derivative work: Vishnu2011, Public domain, via Wikimedia Commons
This article was published previously in January 2015.
Hello all
Thanks for all your stories…
I’m in the UK, my mother has all these problems. Can someone signpost me to a UK SOD consultant?
Thanks so much in advance
Hi Brooke:
Ooooh Brooke, I read your book and how I wish I could have a consultation with you right now. I’m walking in very similar shoes to what you walked in….misdiagnosis, eventual SOD diagnosis, weight loss, GJ tube, and more. I could sure use your advice. I was sort of diagnosed by a local GI doctor who was supposed to refer me to someone else on his team (he hasn’t done that yet and it’s taking forever). I went ahead and contacted Dr. Freeman’s office and they’ve been in contact already. I should be having a consult very soon, followed up by an ERCP and sphincterotomy. I just have soooo many questions that you could help with as especially related to the GJ tube.
I hope you’re doing well.
Elizabeth
Hi Brooke:
I have a question about ghrelin. I’m on a medication that is known to affect Ghrelin levels. Will changes in Gherlin levels cause SOD attacks? Thank you.
I was diagnosed with SOD in 2020. I had my gallbladder removed in 2017. How they diagnosed me through liver function tests were high and the CT imaging over time increased showing dilation of the biliary tract. Final confirmation was done with ERCP. Stents & sphincterotomy. 22 months later I began having symptoms again including burning in my back right and waking up to this every morning like clockwork. To buy more time I learned to externally palpate and hold pressure over the sphincter while laying on my back. I found instructions on how to do this online. It worked for a couple months. When it would release you could hear and feel gurgling and release then symptoms would drop.
I’m a male who lives in Germany. We don’t have any manometric diagnostic for SOD over here and so there’s poor knowledge about SOD in the common german medical world. I found a doctor in Hamburg who taught me how to palpate the sphincter (by laying on my back, just like you do it, Mary).
. She also gave me healing earth (Luvos Heilerde imutox) what I have to use with every meal I eat. By using this earth my stool color immediately turned from brown to dark green. Might be the sphincter of oddi is ph-value conducted and because of that it works. But first of all she asked me to make a few oil treatments simular to what the greek people already did in the antique to channel the gallstones and to clean the bile duct. Since one month now and after 3 years having done this procedure and after 22 years of living with this pressure under my ribs the pain disappeared more and more. I still don’t trust this peace and so I will continue taking the healing earth and if nessecary I palpate again the sphincter of oddi.
Hartwig, thank you for sharing what has helped you! From my searching, it looks like the Luvos healing earth might be similar to something called Bentonite Clay in the US so I plan to try this, as well as the palpation. Can you describe what the ancient Greek oil treatment is? I would like to do that also.
Sorry for answering so late Shauna. It seems I haven’t been on this site for at least half a year. I think Bentonite-clay is similar to Luvos Heilerde imutox but because of its bigger surface it’s much more powerful than Luvos Heilerde. I got told by my doctor that for SOD patients Magnesium is the most important ingredient which is in Luvos Heilerde and in Bentonite as well. (Bentonite is maybe comparable with Luvos Heilerde magenfein, that is also very powerful – and that’s why it’s only allowed to use it for 21 days in a line; otherwise stomach problems could come up. Imutox or something similar is allowed to use several times every day for lifetime.) In her opinion Magnesium is the relaxant No.1 for muscles and sphincters. In Germany it’s also used for women while giving birth. If Bentonite works in your case I wouldn’t change anything – if not I would try something with less surface and the same amount of Magnesium. In sum you could take more Magnesium to relax your sphincter of oddi that way. We all have different levels of SOD and so everybody has to find out by himself what works better or less.
In nowadays the oil treatment is a combination of emptying the towel and then channeling out the sludge or stones of the bile system. Even though I did this procedure already 48 times I would recommend the book called “The Amazing Liver and Gallbladder Flush” by Andreas Moritz or something similar (Maybe Hulda Clark also wrote something about that theme). The description is exactly the same like I always do it. The timing that is described in the book is very important. My doctor gave me the liver/bile system cleaning instruction but I hesitated to do it because I wasn’t sure if I could do it the right way and I thought that the doctors in general can help me better than I can do it by myself. Both was wrong. I started because one night I got colics in the bile/liver system and I was convinced it is the gallbladder. I called the ambulance to bring me to the hospital but they didn’t come. So I saw no other choice than to start the liver-cleaning with the description the doctor from Hamburg gave me. It turned out that the colics and the pain disappeared, a lot of weak gallstones came out and I could save my gallbladder as well. Sorry for my english. I know it should be better.
I’m having same filling of pain . Thin I take my hand and tap my right hand on my chest with force and I will fill a bubble release and pain will slow go away. I have been to numerous doctors and they all wind up putting me on some kind axiaty meds. I’m so tire of this pain. Thanks for sharing your diagnosis with o/ers
Hello,
Now I can’t get off of muscle relaxers (baclofen)…
If anyone has resources or thoughts to share… please do!
I’m a 47 year old male who had his gallbladder removed in the mid 90s. My symptoms have really only gotten worse over the last decade. I always thought my symptoms were due to acid reflux. Symptoms usually arise in the morning upon waking (or being woken up by the symptoms). Just below my right ribcage near where one’s gallbladder would be, I first feel & hear a gurgling or bubbling sensation. This tends to travel from my right side to left centrally just below the sternum. Afterwards, I feel a discomfort of cramping or a sense of fulness in the area often followed by nausea.
These symptoms were manageable by me for many years until the past 5 years when they started becoming more severe. Fall of 2021, I had a back surgery that left me on my back for 5-6 weeks. Normally, laying down in general causes symptoms to return so I was surprised that I didn’t really have much of any symptoms during these weeks. Once I discontinued Baclofen muscle relaxer, it took about 3 days for my symptoms to get so bad I had to go to the ER. After many tests in the ER, they found nothing. Two days later I decided to take a 10mg Baclofen. Within an hour, the pain and symptoms were greatly reduced.
In attempting to get off of the muscle relaxers, I went from 30mg of Baclofen daily to 20mg for a week. Then, for five days I went from 20mg to 10mg & during this time, my symptoms increased. On the fifth day, the nausea was so bad ( and after 8mg Zofran 30 -45mins prior did not seem to do much) I took another 10mg Baclofen along with my 5mg I had an hour earlier. Within an hour, the symptoms were greatly reduced.
I’ve had an upper endoscopy (2018) which was non-conclusive. An ultrasound that was non-conclusive maybe 2 yers ago. An MRI MRCP that was non-conclusive on 1/12/2022 . On 1/19/2022 I had an Upper GI Xray with Small Bowel Follow Through (swallow barium liquid and have xrays taken as the barium moves through the digestion). For this, I’m still waiting on the results.
My GI doctor did mention that if this last test didn’t show anything he might go for an ERCP.
I feel that the discovery that the muscle relaxers help symptoms to go away will hopefully be helpful to solving this mystery but now I can’t get off of these muscle relaxers without getting back into the unbearable side of my symptoms. I hope to find some solution soon! This has been one of the most debilitating issues I’ve had. I can’t continue to take muscle relaxers everyday and I certainly can’t be in pain with nausea each day either.
I’m at my whits end at this point. My quality of life has been greatly reduced. I’m going to keep working with doctors on this but I pray that we’ll find something soon.
Have you looked into adhesions? Also be sure to kill lyme and parasites (very hard to diagnose) but this has helped me immensely. I also have what you are describing. I have to plan carefully what I eat so it doesn’t disrupt my activity. I don’t go many places but I do go horseback riding and I feel better if I fast or drink a smoothie. But I just get so HUNGRY. Cannabis has helped me with pain and nausea the most. And it makes me really hungry LOL! I have avoided all pharma drugs and surgical interventions so far, as I believe it was the HYDA scan that initially screwed me up so bad. I had GB removed and there was no stones or sludge. My Lyme literate dr said it was too bad I did that surgery as we could have saved my GB by killing Lyme and parasites. I am bummed as now I have lived with this chronic pain for 5 years and looks like I always will. I totally understand your frustration. For me, if I take the right number of capsules of ox bile and pancreatic enzymes (Vital Nutrients brand) before a meal it greatly helps. The challenge is estimating how many to take. I pray we get answers soon!
Hi Chris,
I know this is a older post, but your experience intrigued me. I am struggling with constant, debilitating pain under my right ribcage as well. I had my gallbladder removed years ago, but this pain has presented a couple of years ago and I haven’t been able to figure out what is causing it. My experience is similar to what you described.
Did you ever figure out what the issue was? If so, how are you now? Are you still benefitting from Baclofen?
Thanks for any reply, Daniel
Thank you for the very helpful information! It’s truly encouraging and gives me hope! Blessings to you! ?
Hi, I CAN SO VERY MUCH RELATE! I had my Lap Choley in 2009 and was hit with the SOD two weeks later! I already knew exactly what it was because I had been in the medical profession for nearly 2 decades prior to getting severely injured which ended my career! I saw multiple specialists who also diagnosed me with SOD, but I live in (probably the only one) a State where there is literally not one single physician who treats SOD! Not one I’m told! I live on very low income now so I can’t travel out of state, and all these years later I’m housebound with chronic pancreatitis! I’m in so much pain I don’t care if I wake up tomorrow! I have so many miserable health problems and I’m completely alone, except for my loving pet, who keeps me going! The medical profession is an a farce now! They have shamed me, dismissed me, ignored me, beat me down, refused me, gotten in my face about things they know NOTHING ABOUT, and I have ZERO trust for any of them now! 98% of all of health issues are a direct result of their outright negligence and/malpractice! The “surgeon” who did my Lap Choley had over 12 lawsuits at the very time he performed my surgery unbeknownst to me! He eventually had over 25 lawsuits! WTH is wrong with this picture? A WHOLE LOT!!! He’s still harming people in a different town and I’m slowly wasting away! DO NOT GET YOUR GALLBLADDER OUT IF YOU CAN AVOID IT!!! It’s destroyed my life!
Hey so I am reading all this and I am just so shock. I know it’s been a long time since you Worley on here but I pray you answer back. I went to the ER last night and I have slug in my gallbladder and sometimes I have pain over there most of my pain is upper stomach. I am weighing 114 and have lost weight as I don’t want or feeling hungry. Blood looks good but the ultrasound said a little slug and mildly enlarged common bile duct so they want to take my gallbladder out. The weird part is when I force something down to eat Moments later my upper staunch will burn and a gnawing feeling acid blockers don’t work but if I take my nerve pill Xanax it calms it down some. I wake up with stomach discomfort and I will have some back wash not burning that bad. I did in may have irritated esophagus. I was put on Protonix and I took it for 4 weeks and I was like okay I am done. I didn’t want to have to depend on that. I bloat so bad even if I just drank water. I do have some pain in the back more then the right side.any advise please?
My husband has systemic sclerosis and apparently this affects most all his organs. With that said 2 years ago his pain was upper abdominal. We were sent to gastroenterologist and got a diagnosis of chronic pancreatitus. He also has liver fibrosis and raynauds syndrome and lung nodules…his biggest problem is EVERY TIME HE EATS “with enzymes therapy capsule ” he us in debilitating pain. He has lost 55lbs and steadily declining. Dr said he doesn’t think it’s pancreas pain but he isn’t sure what us causing it…im wondering if it’s SOD. how do we find out what 8s causing this extreme pain when he eats food. We have had 4 celiac plexus nerve block…none work we just keep hoping…he cannot work and we are losing our family home od 30 years. Any help would be appreciated
June 2020: judging by the incredible number of posts, a lot of people appear to have this diagnosis. When something like this is apparently so common, yet most have never heard of it, as a physician, I become suspicious that it is sometimes a physician ‘s excuse for saying that he/she does not have a clue as to what is wrong. The other thing that worries me is that many of the posts mention that they have been diagnosed with multiple symptoms as psychosomatic, the traditional “dumping” diagnosis. So I have a suggestion. All organs in the body have functions that are carried out by the cells that make up the organ. They all know what to do, but like the instrumentalists in an orchestra, they have to obey the conductor. The conducting of this orchestra is performed by a part of the brain that controls the organs through an automatic nervous system known as autonomic. The body is like an orchestra playing “the symphony of health”. Well, the lower part of brain that does this automatically consumes enormous amounts of energy and energy cannot be made without vital components of diet called micronutrients. Suppose the Sphincter of Oddi (who was Oddi anyway?) needs automatic messages to order its opening and closing and the orchestration is missing!! The sphincter will simply remain closed, because opening it is the result of a signal. Perhaps the poor orchestration affects other organs and that is why the array of associated symptoms are experienced? Vomiting, for example, is caused by abnormal function of a center in the brainstem known as the vomiting center! We have good evidence that sugar in its widely accepted part of the American diet is responsible for lower brain energy deficiency, a part of the brain that is highly (and I mean highly) susceptible to thiamine (vitamin B1) deficiency. Wouldn’t it be a “gas” if SOD was that simple??????????
I had my gallbladder removed a year and half ago and since then , I haven’ t felt normal . My side still hurts and sometimes feels inflamed. I will be meeting with my doctor sometime soon for blood results. The reason for the blood withdrawal was due to my ALT and AST numbers escalating. I am not sure if this is all related to my gall bladder removal . I had never had problems with my liver. Today, it makes me wonder how much longer I am going to have to deal with this pain. Since my surgery, I also became so constipated that had to start taking Docusate to assist with bowel movements. I am so tired of all this that I wish there was a doctor that could inform me as to what is wrong with me.
I am glad that I found this site because it has empowered me with some facts that I will be able to use when meeting with my doctor .
Wish each one of you better days to come.
i was diagnosed with gall bladder disease in 2001. i’d been having episodes of being really sick and severe pain for about three years on and off. i had an ultrasound and they saw no stones. so i was given some mild paid meds and the episode would ease off. then in 2001 the pain started up again and this time would not ease. one bite of food would send me into such severe pain i quit eating (lost 15 lbs in less than two weeks). finally my doc sent me to a gastro doc – he performed a HIDA scan and i was their first 0 score, completely non-functioning gall bladder. i had laparoscopic surgery right after. within a few months i began having episodes again of some pain but mostly nausea, vomiting, diarrhea. i found that eating something high in fat could bring that on so i avoided fried foods, etc. i went back to the gastro doc and was diagnosed with SOD. they gave me Zofran for nausea (which doesn’t help). over these years since i have had probably an episode or two (maybe one or two more) each year but since Thanksgiving of 2018 i have now had 9 episodes. they are very severe and debilitating – they start with a burp which tastes and smells like sulphur. i know then that it’s on it way. within hours i start to feel the gurgling in my stomach, extreme nausea and am in the bathroom vomiting violently for hours. this is then followed by hours of watery diarrhea. they have become more and more severe in these 9 episodes. i had one last night – the vomiting started at 2:30 am (stomach acid and it’s always amazing how much has accumulated) and has continued along with diarrhea until just a short while ago, roughly 9 hours; i expect it to start back up again at least for a few hours. i work from home but was not able to until just now. i am miserable but am out of the bathroom at least for now. i cannot eat but will try something in a few hours – usually jello, saltines, broth. that will be my diet for the next couple of days until i get back to some normalcy. i am also exhausted mentally and physically. i’ve been very careful about food especially since the episodes have picked up but i am under extreme stress with work (and a few other things). husband disabled and out of work and i work two jobs, 7 days a week. i am in my early 60’s. Does anyone else have the severe vomiting and diarrhea? i have pain with the episodes but mostly mine is nausea. those sulphur burps are horrible – does anyone else have those? i call it my “backed up sink”. it sounds like my episode frequency is not as severe as many of you but in the time i am in it i am completely helpless and beyond miserable – always lasts a day or more, sometimes several. i probably need to see my doc again but our health insurance is catastrophic only and these tests are very expensive. i need to see if there might be a clinical trial i can participate in. truly awful – i feel for every one of you.
Try buying acupen…. stimulate your GB34 and GB19 before and after you eat your meal…
Just wondering who out there has had biliary roux en-y surgery for their SOD dysfunction, and how it went for you. I keep getting stents that work to some degree, and have had this routine for the past 4 years. would like to see about something more permanent versus going into the doctor so often for ERCP’s. I see Dr. Freeman here in MN who I know is hailed as a top notch Dr. in this field. But I think I have run my course with him. Recently had 5 stents placed but this time it is not providing relief as it has in the past. Ready for the next step I ugess. Any comments???
Hi Bret,
Do you still have your gallbladder intact? I am wondering if Dr. Freeman will work with me since I still have my gallbladder and have SOD Type III. I am looking all over for a doctor who will use stents or sphincterotomy on me.
Thanks.
Go to http://www.sodae.org and look at the doctor list. It is outdated, so you’ll need to interview whether the doctors still treat SOD and if so what treatments do they employ.
Just wanted to say thank you for bringing awareness to something that goes undiagnosed and yet affects so many. I thought I’d share my story with the hope that someone may relate and find some relief… mentally and physically. It all started with severe abdominal pain that felt like a knife stabbing me through to my back. The pain could last from 1 hour to 4 & 5 Hours at a time. Pain that would have me on all fours, rocking for some relief( if any) and at times I would pass out from the pain. At the age of 23 I had my gallbladder removed as the symptoms/ test revealed gall stones. I felt relieved as I believed this would be the end. Boy was I wrong! For the next 22 years after that procedure i continued to suffer immense abdominal pain, nausea, vomiting and weightloss. I was mentally and physically exhausted. I was put on anti depressants and I developed a fear of eating. I was afraid to eat for fear of triggering an attack. I was hospitalised with Pancreatitis for a week. My blood results were compared to an 80 year old drunk. The strangest part of that was that I didn’t drink alcohol at all. I just couldn’t understand. Numerous Drs, specialists, hospital stays and test after test just showed up nothing. Four months ago, however, I finally found a GI that gave me my life back. One visit with him regarding another issue led me to discuss my abdominal pain. He stopped me after a few words and proceeded to tell me what MY symptoms were and the possible triggers. He left me gobbsmacked. I just wanted to cry. He was convinced that I had SODS ( of course I had never heard of it before let alone have anyone ever really listen to me and not put me in the ‘too hard basket’. He had me undergo yet another scan (MRCP) which confirmed his suspicions. Four weeks from his initial diagnosis I was scheduled in to have an ERCP with a Sphincterotomy and a pancreatic stent inserted for 1 week to prevent pancreatitis (which is one of the complications of the proceedure). Unfortunately, I did develop mild pancreatitis and stayed in hospital for 5 days. The pain however was not as severe as my past experiences. After the procedure the professor explained just how tight my biliary duct had been. It was closed so tightly that I ended up with a large cut from the top in order to prevent the muscle spasms which were the cause of my pain. I am now 4 weeks post op, I have not returned to work yet. I have some mild discomfort in the upper abdomen ( just feels a little heavy) I am a little out of breath at times. I know it takes time to recover and although a little uncomfortable it is nothing compared to many years of debilitating pain. I am booked in to see my specialist in 4 weeks and I will post an update. Hope that my story may have helped someone in some way.
Thankyou Lora ….I’m in the Uk and your story has helped me ….just don’t know where to go next ❤️Xxx
I have been in pain since the end of April it started as under the right ribs and in my back. I have had ultrasound, Hida scan, endoscopy, and blood work all come back normal. It takes forever to get doctor appointments so time just keeps moving along with no answers. I have tried all kinds of natural approach’s where I got ideas off of a site called gallbladderattack which include bile salts, digestive enzymes, beet root, hcl, FOS, coffee enemas, detox. I have also tried eastern medicine with acupuncture and supplements I am now going to a natural doctor that swears the supplements he put me on will work in 3 to 4 weeks I’m on week one and things seem to be getting worse. I now have pain on the left side under the ribs and back that had been happening almost a month. I feel like when I read the symptoms this lines up with what I’m feeling match’s up except I still have my gallbladder but, I don’t know what to do anymore. I have another gastro apt at the end of September are there any suggestions for tests or what to do from here. I am scared if the suggest to remove the gallbladder since I have heard so many horror stories but, I feel like I can’t keep living like this either. Any advice would be so greatly appreciated!
Hi there Katie, I’ve only recently stumbled upon this site and read your story. I know it’s been a while since you’ve posted and I hope your pain has improved with the supplements you were given. All I can say is NEVER stop searching for a dr who will listen and investigate things further. For 22 years ( after having my gall bladder removed- drs thinking that’s was the root of my pain) I continued to have the pain. I posted my story a few days ago. Believe me there is light at the end of the tunnel. Everyone is different and not all treatments work the same but you need to find a good dr that will listen to you. I don’t know what area/country you’re in but I’m in Sydney, Australia and if by some chance you are too and you’d like the details of my specialist I’m more than happy to forward you the details. Hope you’re doing well
Hi Lora,
Can you please share the name of your specialist? I am searching all over the world for a doctor. Thank you so much.
Hi Courtney – did you end up getting your gallbladder removed? If so, how’s it going? I’m
In a similar situation today. Needing removal but not sure of what else is going wrong. Did you find a good doctor?!
Hi Lora! What did your doc do that provided relief? I have type 3. They removed my gallbladder and it’s now
worse:(. There just has to be something! I had my blood drawn to check hormones today as I know it contributes to the pain for women. Thanks for any info you can share:)
I have had pain under my right rib cage and in my back since the end of April. I have had an ultrasound, Hida scan, endoscopy and blood work and they all come back normal. I have tried natural remedies from a site called gallbladderattack which include bile salts, beet root, digestive enzymes, hcl, and FOS. That didn’t help so I went on the diet which I have lost 35 lbs currently which I can not afford to lose anymore weight now that I’m 128 at 5’6. I have tried acupuncture and eastern medicine and now have started with a natural doctor. Nothing seems to help things just seem to be getting worse the pain is now on both sides left and right under the ribs and in the back. Does this even sound like SOD I feel like it does when I read symptoms about it out there the only difference is I still have my gallbladder so I don’t know where to go from here. I hear so many bad stories about gallbladder removal but how do you avoid it. I barley eat and the pain never goes away not to mention the digestive issues that come along with all this. Any suggestions would be appreciated so much!
Hi there Katie, I’ve only recently stumbled upon this site and read your story. I know it’s been a while since you’ve posted and I hope your pain has improved with the supplements you were given. All I can say is NEVER stop searching for a dr who will listen and investigate things further. For 22 years ( after having my gall bladder removed- drs thinking that’s was the root of my pain) I continued to have the pain. I posted my story a few days ago. Believe me there is light at the end of the tunnel. Everyone is different and not all treatments work the same but you need to find a good dr that will listen to you. I don’t know what area/country you’re in but I’m in Sydney, Australia and if by some chance you are too and you’d like the details of my specialist I’m more than happy to forward you the details. Hope you’re doing well
Hi, I’m in Sydney and would love to know your specialists details!!
Hi Lora, I have just come across this site. My 20 YO daughter is suffering greatly since having her gall bladder removed last July. Can you please tell me the name of your specialist in Sydney? Thank you. Michelle
Thank you so very much for this article. I’ve been suffering for almost 2 decades with SOD symptoms and to date, no one has even mentioned it to me. This article is literally the first time I’m hearing about it! I’m crying because everything you said resonated so completely with my experience so far. Thank you, thank you, thank you for taking the time to write this. You may have just saved my life!
My Husband was diagnosed with Idiopathic pulmonary fibrosis 5 years ago and was on minimum daily dosage prednisone (7.5 mg), azathioprine and N-Acetyl. They put him on 6 liters of oxygen and steroids to slow down progression. His symptoms have always been shortness of breath, and coughing badly. the prednisone wasn’t really working and he could not tolerate them for long due to severe side effects, There has been little if any progress in finding a cure or reliable treatment. So this year his primary physician suggested we started him on Natural Herbal Gardens Idiopathic Pulmonary Fibrosis Herbal formula which eased his anxiety a bit,, We ordered their IPF herbal treatment after reading alot of positive reviews, i am happy to report with the help of Natural Herbal Garden natural herbs we have been able to reverse my husband symptoms using herbs, his symptoms totally declined over a 9 weeks use of the Natural Herbal Gardens IPF natural herbal formula. His Idiopathic pulmonary fibrosis is totally reversed! Their official web page is naturalherbalgardens . c o m After the herbal treatment he also finally was able to give up smoking after 20 years. We are thankful to nature, herbs are truly gift from God
A CT scan in August of 2009 verified that I had Idiopathic Pulmonary Fibrosis. My first symptoms were cough and shortness of breath. I was on prednisone and inhalers. My blood oxygen level was 50 and i was extremely short of breath, i was barely able to breath. I went through cardio pulmonary rehab, It helped but not too long before all the severe symptoms returned. December last year, a family friend told us about Rich Herbs Foundation and their successful lungs disease treatments, we visited their website w w w. r ic h h e r b s f o u n d a t i o n. c o m and ordered their IPF herbal treatment, i am happy to report this treatment effectively reversed my Idiopathic pulmonary fibrosis and symptoms. I am back on my feet, i walk daily now and has made me able to walk my two dogs again without shortness of breath or sudden loss of energy. My activity level is up again.
Hi my name is Paula can some of you guys please tell me your symptoms for sod I’ve been so sick for 12 mths now and has gotten absolutely no where with drs to find out what is wrong
There is new information on SOD, that it affects the thyroid its hormones and thyroid dysfunction affects Sphincter of Oddi and other sphincters. According to Hindawi – a site for peer reviewed journals:
For decades, one well-known risk factor for the development of gallbladder stones has been hypothyroidism. Recent studies have interestingly reported that the risk in particular for common bile duct (CBD) stones increases in clinical and subclinical hypothyroidism. There are multiple factors that may contribute to the formation and/or accumulation of CBD stones in hypothyroid patients, including decreased liver cholesterol metabolism, diminished bile secretion, and reduced sphincter of Oddi relaxation.
Bile duct flow has an affect on the Thyroid and the thyroid has an affect on the Sphincter of Oddi.
I have had SOD for 15 years – ever since I had my gallbladder out. A gastro specialist diagnosed it about 5 years ago and wanted to do a sphincotomy. I have known people who have had this and it is ongoing to cut it then sew it and put stents in. At Hopkins they have stents that break down on their own and don’t need to be removed. I have managed pretty well with diet, etc. But now a CT scan showed i have enlarged bile and pancreatic ducts – probably due to back up. I am taking a bile builder to thin the bile and a stone breaker and I am looking into subclinical hypothyroidism and will probably be taking a thyroid medication to see if it helps. They know the Sphincter is regulated by hormones, but they really haven’t figured it out until now! Hopefully this will be a breakthrough for all the women who have this and taking a hormone – thyroid or otherwise will help or totally eradicate it. Good luck everyone. Thank you for your story.
Would you post the link to the study? Thanks.
Penny if you don’t mind me asking did you ever have any pain in your right side in your back? Did your stomach swell up also ? I am having pain in my right side in my back about where my gallbladder would be. I had my removed 17 years ago. My Gastrointestinal dr said that one of my bile ducts is enlarged and he thinks it might be a blockage.
Hi..yes I have suffered for 10 years with pain that radiates into my back. It feels like I have a vise grip squeezing me constantly. I was diagnosed with sod shortly after having my gallbladder removed. I was in the hospital so sick. Losing weight. All my tests were normal. Except my liver count. I was finally sent via ambulance to Baylor in Dallas to the best gastroenologist that saved my life. He did an ERCP and a sphincteroctomy. Basically cut my bile duct so it could drain. I have had that done twice. I’ve had a celiac nerve block. Which did not help with my pain. I took neurontin for few years for pain and depression. As there was nothing else he could do for me. Stay persistent with your Dr or find another one that cares to help you. Stretching helps some mostly pain meds and laying down. God Bless you!
It makes me angry to read a post where a woman who couldn’t eat and weighed 90 pounds was told it was all in her head as she was dying.
I was called a hypochondriac and worse as I almost died from a potentially fatal infection in 2014. Even after I was diagnosed, I was refused medication to kill the pathogen by doctors who kept saying, “You don’t LOOK that sick.” And then I ended up hallucinating and having seizures on the cold, wet floor of the woods in an area of Fort Worth called then “ho’ stroll.” I’m lucky to be alive.
I’d like to share information I learned during my Dallas area workplace’s outbreak of an airborne infectious disease that can cause malignancies, precancerous conditions, rheumatological diseases, connective tissue diseases, autoimmune symptoms, inflammation in any organ/tissue, seizures, migraines, mood swings, hallucinations, etc. and is often undiagnosed/misdiagnosed in immunocompetent people. Of course, some of it you may already know.
My coworkers and I, all immunocompetent, got Disseminated Histoplasmosis in Dallas-Fort Worth from roosting bats, the most numerous non-human mammal in the U.S., that shed the fungus in their feces. The doctors said we couldn’t possibly have it, since we all had intact immune systems. The doctors were wrong. Healthy people can get it, too, with widely varying symptoms. And we did not develop immunity over time, we’d get better and then progressively worse, appearing to relapse periodically and concurrently every year.
More than 100 outbreaks have occurred in the U.S. since 1938, and those are just the ones that were figured out, since people go to different doctors. One outbreak was over 100,000 victims in Indianapolis. 80-90+% of people in some areas have been infected. It can lay dormant for up to 40 years in the lungs and/or adrenals.
It’s known to cause hematological malignancies, and some doctors claim their leukemia patients go into remission when given antifungal. My friend in another state who died from lupus lived across the street from a bat colony. An acquaintance with alopecia universalis and whose mother had degenerative brain disorder has bat houses on their property.
This pathogen parasitizes the reticuloendothelial system/invades macrophages, can infect and affect the lymphatic system and all tissues/organs, causes inflammation and granulomas, etc. It causes idiopathic (unknown cause) diseases and conditions, including hematological malignancies, autoimmune symptoms, myelitis, myositis, vasculitis, panniculitis, dysplasia, hyperplasia, etc. It causes hypervascularization, calcifications, sclerosis, fibrosis, necrosis, eosinophilia, leukopenia, anemia, neutrophilia, pancytopenia, thrombocytopenia, hypoglycemia, cysts, abscesses, polyps, stenosis, perforations, GI problems, hepatitis, focal neurologic deficits, etc. Many diseases it might cause are comorbid with other diseases it might cause, for example depression/anxiety/MS linked to Crohn’s.
Researchers claim the subacute type is more common than believed. It is known to at least “mimic” autoimmune diseases and cancer and known to give false-positives in PET scans. But no one diagnosed with an autoimmune disease or cancer is screened for it. In fact, at least one NIH paper states explicitly that all patients diagnosed with sarcoidosis be tested for it, but most, if not all, are not. Other doctors are claiming sarcoidosis IS disseminated histoplasmosis.
The fungus is an Oxygenale and therefore consumes collagen. It’s known to cause connective tissue diseases, rheumatological conditions, seizures, and mental illness. Fungal hyphae carry an electrical charge and align under a current. It causes RNA/DNA damage. It’s known to cause delusions, wild mood swings (pseudobulbar affect?), and hallucinations. It’s most potent in female lactating bats, because the fungus likes sugar (lactose) and nitrogen (amino acids, protein, neurotransmitters?). What about female lactating humans…postpartum psychosis (and don’t some of these poor women also have trouble swallowing)? The bats give birth late spring/summer, and I noticed suicide rates spike in late spring/early summer. It’s known to cause retinal detachment, and retinal detachments are known to peak around June-July/in hot weather. A map of mental distress and some diseases appear to almost perfectly overlay a map of Histoplasmosis. Johns Hopkins linked autism to an immune response in the womb. Alzheimer’s was linked to hypoglycemia, which can be caused by chronic CNS histoplasmosis. The bats eat moths, which are attracted to blue and white city lights that simulate the moon the moths use to navigate. Bats feed up to 500 feet in the air and six miles away in any direction from their roost, but not when it’s raining or when the temperature is less than approximately 56° F.
I believe the “side effects” of Haldol (leukopenia and MS symptoms) might not always be side effects but just more symptoms of Disseminated Histoplasmosis, since it causes leukopenia and MS symptoms. What about the unknown reason why beta receptor blockers cause tardive dyskinesia? The tinnitus, photophobia, psychosis “caused” by Cipro? Hypersexuality and leukemia “caused” by Abilify? Humira linked to lymphoma, leukemia and melanoma in children? Disseminated Histoplasmosis is known to cause enteropathy, so could some people thought to have nonsteroidal anti-inflammatory drug enteropathy have it and taking NSAIDs for the pain/inflammation it causes, and the NSAIDs aren’t the actual culprit?
From my experience, I learned that NO doctor, at least in DFW, will suspect subacute and/or progressive disseminated histoplasmosis in immunocompetent people. Some doctors, at least the ones I went to, will actually REFUSE to test for it, even when told someone and their coworkers have all the symptoms and spend a lot of time in a building with bats in the ceiling. Victims will be accused of hypochondriasis. In fact, the first doctor to diagnose me was a pulmonologist, and the only reason he examined me was to try to prove that I didn’t have it, when I really did. No doctor I went to realized bats carry the fungus. And NO doctor I went to in DFW, even infectious disease “experts,” understand the DISSEMINATED form, just the pulmonary form, and the only test that will be done by many doctors before they diagnose people as NOT having it is an X-ray, even though at least 40-70% of victims will have NO sign of it on a lung X-ray. It OFTEN gives false-negatives in lab tests (some people are correctly diagnosed only during an autopsy after obtaining negative test results) and cultures may not show growth until after 12 weeks of incubation (but some labs report results after 2 weeks).
One disease of unknown cause that could be caused by Disseminated Histoplasmosis: I suspect, based on my and my coworker’s symptoms (during our “rare” infectious disease outbreak) and my research, that interstitial cystitis and its comorbid conditions can be caused by disseminated histoplasmosis, which causes inflammation throughout the body, causes “autoimmune” symptoms, and is not as rare as believed. I read that “interstitial cystitis (IC) is a chronic inflammatory condition of the submucosal and muscular layers of the bladder, and the cause is currently unknown. Some people with IC have been diagnosed with other conditions such as irritable bowel syndrome (IBS), fibromyalgia, chronic fatigue syndrome, allergies, and Sjogren’s syndrome, which raises the possibility that interstitial cystitis may be caused by mechanisms that cause these other conditions. In addition, men with IC are frequently diagnosed as having chronic nonbacterial prostatitis, and there is an extensive overlap of symptoms and treatment between the two conditions, leading researchers to posit that the conditions may share the same etiology and pathology.” Sounds like Disseminated Histoplasmosis, doesn’t it?
My coworkers and I were always most ill around April/May/June, presumably since the Mexican Free-tail bats gave birth in Texas during May, and fall/Thanksgiving to December, for some unknown reason (maybe migrating bats from the north?). We had GI problems, liver problems, weird rashes (erythema nodosum, erythema multiforme, erythema annulare, etc.), plantar fasciitis, etc., and I had swollen lymph nodes, hives, lesions, abdominal aura, and started getting migraines and plantar fasciitis in the building, and I haven’t had them since I left. It gave me temporary fecal incontinence, seizures, dark blood from my intestines, tinnitus, nystagmus, benign paroxysmal positional vertigo, what felt like burning skin, various aches and pains (some felt like pin pricks and pinches), tingling, tremors, “explosions” like fireworks in my head while sleeping, temporary blindness, and chronic spontaneous “orgasms”/convulsions. Suddenly I was allergic to pears (latex fruit allergy?). I had insomnia (presumably from the fungus acidifying the blood, releasing adrenaline) and parasomnias. I suddenly had symptoms of several inflammatory/autoimmune diseases, including Fibromyalgia, Sarcoidosis, ALS, MS, Sjogren’s syndrome, etc. that have disappeared since leaving the area and taking nothing but Itraconazole antifungal.
No one, including doctors (we all went to different ones), could figure out what was wrong with us, and I was being killed by my doctor, who mistakenly refused to believe I had it and gave me progressively higher and higher doses of Prednisone (at least 2 years after I already had Disseminated Histoplasmosis) after a positive ANA titer, until I miraculously remembered that a visiting man once told my elementary school class that bats CARRY histoplasmosis….so much of it that they evolved to deal with the photophobia and tinnitus it causes by hunting at night by echolocation. There’s a lot more. I wrote a book about my experience with Disseminated Histoplasmosis called “Batsh#t Crazy,” because bats shed the fungus in their feces and it causes delusions and hallucinations, I suspect by the sclerotia it can form emitting hallucinogens (like psilocybin and dimethyltryptamine) along with inflammation in the CNS. (Schizophrenics have 2X of a chemical associated with yeast, part of the fungal life cycle.)
Thank you for your time,
Susan McIntyre
It’s not only bats that carry histoplasmosis disease…birds can become carriers,once infected,and it is expelled by the birds from their stool,which once is dried,can be carried by a breeze….if one had worked in a grocery store that was open 24/7 and birds accidentally found their way inside the building and carried this in their stool and dropped the stool and this dried and the ac ductwork broke up the dried microscopic material and forced it thru the vents to be distributed throughout the store,this,also,is not good especially if the management failed to proactively deal with the birds who became trapped inside the store…btw…histoplasmosis also causes spots in the backsides of the eye
Hello,
I am writing from Victoria, BC, Canada, I am a 48 year old female and I still have my gallbladder, no history of stones. My main complaint has been pain and at times going through bouts of feeling sick and crappy. I was laid off of my job ( due to energy level I am sure) before Christmas, this has been a huge blow.
I have been waiting to get in to see a gastro specialist since last April. It is a crazy long wait to see specialists in Canada, up to a year and I don’t even know where I am on the list or who the doctor will be so no hope of getting on a cancellation list etiher. I was diagnosed because I had a hida scan because I have the upper right pain under my ribcage. It took a long time to get that scan and to get this figured out. In the meantime I paid for my own colonoscopy (Dec. 2016) and I was sent for a CT scan, both of those showed nothing. I can’t afford to pay for things like that either but felt desperate and scared.
I also have Celiac disease and adhere to a very strict Gluten Free diet, so I suffered for years with that. It was undiagnosed for a very long time. I have had that under control for a long time now.
The reason I am writing right now is that my family doctor said “I’ve never actually seen anyone with this before” and he has done nothing for me as we are just waiting for specialist. The pain comes and goes and I was fine all of the fall until about 3 weeks ago. I have had horrible chronic pain in that spot, also around my back, lower right pain and all of my intestines feel like they are twisted and just plain hurt. I also had the chills for a couple of weeks but those have subsided. (no fever) I take over the counter pain meds around the clock but nothing even touches it. I feel like my life is in a holding pattern as I wait for answers and relief. Any suggestions of tests I can suggest for the family doctor to send me for while I wait? Any suggestions to help with the pain? I don’t want codeine ever as that is super constipating and not worth it for me ever.
I know this web posting is old. I hope you were able to find help.
My gallbladder ‘died’ – it did not contain a single stone.
I was a triathlete. Never could really eat fat or bad.
I had gnawing pain that turned to burning and searing. I had a recent mastectomy so docs thought it was from that.
They ordered imaging.
All scans kept coming back ‘normal’ yet I was having terrible pain burning and searing — this went on for years.
I eventually got to where I couldn’t eat anything. This was during the pandemic when everything was locked down too. I took a big turn for the worse then.
I had another CT scan- normal.
I had a HIDA scan (without the drink that contains the fat) – normal.
Two days after the radiation injection from the HIDA scan. I went sepsis.
I walked into the dr’s office and said I wasn’t going to make it through the weekend if they sent me home or ask me to come back next week. I knew something was seriously wrong. The dr texted her surgeon friend who agreed to see me right then.
I was right.
LISTEN TO YOUR BODY
I had to have an Emergency cholecystectomy NOT A SINGLE GALLSTONE was found BUT MY GALLBLADDER HAD GONE GANGRENE AND NECEOTIC. I wouldn’t have made it through the weekend. I was literally hours away from death.
Most gallbladders have to be removed because of stones. The person has what’s called a ‘calculus gallbladder’ (gallbladder with stones ). There is a rare condition called ‘acalculus gallbladder’ meaning ‘without stones’. Remember, a ‘calculus’ gallbladder has stones. Stones show up on imaging. ACALCULUS (without stones) appears completely normal.
The only way to determine an acalculus gallbladder is to do a HIDA with the fat-filled oral drink and the nuclear injection.
My gallbladder had years of chronic inflammation to the point it turned the tissue almost rubbery and eventually there was tissue death from the prolonged pressure of built up inflammation.
I had my gallbladder out 6 months ago and although it ‘saved’ my life and I am grateful. I for sure am going to die of this SOD. I lhad life-saving surgery. That’s tue. But this isn’t living. I had surgery thinking I would be cured, only to end up on my back and debilitated. I am a ticking time bomb now. I get infections where there was surgery. But they are impossible to prove. IV antibiotics make resolve the pain when the flare up bout gets too bad.
I have constant pain. Nausea I can’t tolerate. The worst is the soaking sweats. All day and debilitating at night. I turn beat red from head to toe and the sweat pours to the point I look like I have been thrown in the pool.
I suspect that is from the pancreas that is miserable. The damaged tissue didn’t end at the gallbladder. The ducts and pancreas eventually get it too. There acid make everything in my belly sore and swollen. I used to have a nice figure. Now I think about dying more than even staying alive-
Long gone are the days of having the luxury to worry about something so trivial as a body figure.
I’m about as tough as it comes. But this? It’s like being water-boarded. It’s relentless—and you can’t pick your head up for air to catch a breath, get some strength, eat, maybe.. here and there. You are shackled to this completely. I have been through lots. Rock hard. But this? This will break down even the strongest gladiator.
My potassium dropped for a week after the gallbladder removal. Dropped to the point I almost died. (You convulse when it gets too low) That happened 4 times after surgery (during the middle of the lockdown— an emergency room wasn’t exactly the place you wanted to be. Much less have an operation in a hospital filled with hot covid patients. This has been beyond tough. My family has been traumatized by it all. We are genuinely sick people whom now live teetering on the verge of being one ER trip away from death.
Once in a great while we get a few good days. Absolutely and they are treasured. But for the most part? For the last 6 months (and I went through bad covid for several weeks). This is a slow continuous torture. And the doctors? The ones that helped you? Gone.
There isn’t much that can be done. The ‘sphincter’ must be able to do it’s job of opening and closing. But a sphincter that has scarred (turned rubbery) can’t open and close so cutting the sphincter in this case would just make the oozing acid free-flow more.
Eating? White rice. Some things here and there. But for the most part – that’s gone. A gourmet coffee or glass of fine wine? Gone. I used to live a mostly raw food diet of vegetables and fruits and careful protein. Organic grains, special water, blah blah blah.
Now I’d do anything to be able to eat a huge salad. Or anything really at all for that matter.
Being able to plan anything ever again with certainty you won’t be on your back systemically sick? — 100%.
I’ll take any suggestions or name of a doctor or specialist. I am desperate. I have a family I have ro continue to raise.
May God bless you all. Hang in there. We are stronger together.
Blessed for this moment and to know we are not alone.
You brought me back to when I was very ill, just like you. I didn’t want to die, but I didn’t want to live like that. I have felt “ok” for a few years. Now, I have chronic pancreatitis. I had the transduodenal sphincteroplasty, which did help my SOD. However, I think it was inevitable my pancreas would begin to act up. I read your comment and could relate to all you said. It was rough. Every day rough. I don’t know what happened exactly, but I started feeling better, at least to enjoy life. I still cannot work full time. I’ve passed on a few job offers out of fear my symptoms would come back. There are some things that have helped, but you must outweigh the good with the bad. I hope you find a caring doctor and a solution.
What was the name of the doctor you saw? I take care of a patient in Florida and we’ve been searching high and low for a doctor who could help him. Everyone local just blows him off.
Just looking to get any feedback out there from folks who have had the biliary roux Y surgery for SOD. Curious how things went, and what led to being prescribed that surgery. I have gone through cycles of stents in/out for the past 3 years and get temporary relief from these. The multiple stent placements have worked, as I have had spells of what I would call normal health for a man in his mid 50’s. But to no surprise the effect wears off. This last procedure I had was 4 stents place in the biliary duct back in late January of this year. The stents were removed 6 weeks later, and I had a nice run of great health until 5 weeks ago when I felt the all too familiar symptoms return. I am now back in the abyss looking at this same procedure ( I assume given that Dr. Freeman said he would do this again when needed). I have to think that the relief from this will only get shorter and shorter, thus making me wonder about surgery. Please let me know your experience if you can, thank you!!
Most of the people I know who have benefited from biliary roux en y are those who solely benefited from biliary stents. There are a few SOD support groups on Facebook you may want to find as there are people on there who had the surgery. I don’t know of anyone who regretted having it done. I know Dr. Freeman is more hesitant to do frequent stent placements and instead opting for annual stents rather than every few months.
I get the sense that Freeman does not do the BRY surgery then? I am trying to coordinate my next stent placement as I write as Freeman has agreed to do this one more time to see how much time I can gain relief from this. As I mentioned, he has placed multiple stents in the biliary duct in order to stretch the duct, and then take those out 6 weeks after the placement date. I have had almost normal health attained by this method, albeit for 8 months the first time, 5.5 months this last time. We’ll see. To your point Brooke, if I get relief once again, wouldn’t this support the Roux En Y surgery you mentioned?
There is a solution to SOD which I have not seen posted as of yet. If the pain is severe, a Whipple operation would be curative for SOD.
Brooke, how do you feel nowadays? I am having trouble with left side, don’t know if it is pancreas or not yet but I was recently diagnosed with severe esphagitis and No meds for acid work. It is only getting worse. I am thinking it is bile reflux. I had my gallbladder removed 5 years ago. I have been reading on facebook about some people who are having the DS (duodenum switch, is it the same as roux en y?) for this. Do you feel like it worked for you? Do you still have pancreatic pain after the surgery?
I also have SOD. A few years ago during an ERCP, the GI placed a temporary bile stent for 3 weeks. I felt great! More energy, more alertness, my digestive system worked well and no discomfort or pain with my SOD. However, the doctor removed it after 3 weeks, because he said it was only temporary and would accumulate stuff on the sides and clog up…so I could not keep it permanently. I was getting pancreatitis flare ups every 1.5 to 2 years. Now I am suffering another SOD-pancreatitis flare up…and have not gotten it cured yet. I am looking for natural cures because I already had 3 ERCP’s and my GI said that is all he can do, 3 is the limit.
Wow. As much as I am online. I never took the time to read all of this.
I too have S.O.D for over 16 years. Mine started before my gallbladder was removed. They only removed it, thinking that was what was causing all my misery.
I have type 1 on both sides. For years I too was told it’s in my head, or IBS. Down to 85lbs I’ve seen all types of doctors. Finally an off the wall pain doctor figured it out. Nothing has really fully helped. I also take nitro when I feel an attack begin. However at this point in my life I am not finding much hope. After 16 years my stomch is to the point I’m either nauseated 24/7 or as soon as any food hits my stomch, instant nausea. They had did a stomch wrap surgery to ease off the burning in my throat and stomach. However all it did is stop me from vomiting physically. The nausea is literally there every day. They have me on Emend 125mg x2 a day plus zofran. Doesn’t help. I’m not sure at this point what else can be done. On top of it all I have stage 3 thyroid cancer which has spread. Pain meds are just not going to help due to it triggering the S.O.D.
I’m not sure what is worse, pain or nausea.
I’ve opted out of chemo due to all the above. My ph levels are off the charts and I’m lucky to even eat a small kids size meal.
The quality of life has disappeared all together now. So I’m not sure if there are any other options. My family doctor has been amazing through all this and learning from me. However he too is at a loss. He thinks maybe the Mayo clinic can help?
Any ideas would be welcomed..
Is there something that can be taken before the pain meds so it doesn’t trigger more pain?
I have been a long time sufferer of SOD which due to doctors unaware of even what SOD was, I now have mild chronic pancreatitis. After having an ERCP that did provide some relief, I began to have flares of pain. After years of trying every supplement available, I decided to test my body PH. Of course, being on the (SAD), standard american diet, I absolutely was acidic. After going on a real food diet, ie, nothing from a box, frozen, or refined, including all grains and only eating real food, it all vanished as swiftly as it came. Next time the pain creeps in, take a half teaspoon of Himalayan sea salt and mix it with water. It will swiftly raise the PH of the duodenum and provide relief. I do not recommend treating this solely with salt for a multitude of reasons, but treat it with eating as we were designed to eat, with fresh, nourishing foods.Wishing you health!
My daughter called Mayo in Sept. She has SOD type 2. They wouldn’t see her because only her liver enzymes are elevated during an attack, not her pancreas ones. I’m no expert, but I would look at Indiana U, Cleveland Clinic, or Johns Hopkins. Good luck.
My daughter had gall bladder and spoken removed aged 11…now at 21 we have had the worst 5 years imaginable.
25 + hospital admissions to be told over n over nothing showing any problems. Eventually a doctor mentioned sod and booked a hida scan which came back negative…as you can imagine we were deflated it was only thing that made sense.
We had a meeting with a liver consultant that had practically finished before we sat..he dismissed some symptoms which were
Elevated liver bloods
Dilated cbd
Dilated pancreatic duct
Vomiting
Nausea
Constipation / diahorrea
Weight loss
Pain
After questioning and challenging him we eventually have been referred to a dr who has an interest in this disease.
She is now a mother to a 18 month old boy how we got there I don’t know but also in the process of returning home she can’t look after him properly alone and fighting to keep her job!!!.
She is made to feel like an addict in hospital justifying all the time why she needs iv meds.
She has tried every medication known to man…I eorry about the mental impact and how strong she is if this meeting don’t go in our favour I don’t know what we will do..?
Hi Brooke,
I had my gall bladder removed in 2013 and just recently had a baby sept 2016. I have had elevated liver tests. I have had awful “attacks” ever since I gave birth. I have recently been diagnosed with this condition but no surgeon is willing to touch me due to my age and the fact that I am a new mom. I am not sure how to cope. I have been using buscopan to alleviate symptoms but more often I have to take over my recommended dose. So do I need to wait until my condition and get a lot worse before anyone will do anything ?
What were your triggers? I’d like to make sure that this is exactly what I do you have and not something else. I have a lot of the same symptoms as you mentioned above. The vomiting only occurs just before an attack. I just haven’t figured out what brings them on they seem to just happen out of no where and have not noticed any trends.
Sabrina, I am so sorry you have SOD symptoms. You may want to check out the SOD doctor list at http://www.sodae.org to find an SOD doctor. If you are only having attacks, believe it or not, nitroglycerin spray or tablets can help. I have also written a book that covers natural remedies, dietary suggestions, and procedures that can help. Info on the book can be found on that website. Everyone’s triggers are different but the most common are: caffeine/coffee, fatty foods, chocolate (probably due to the high fat and caffeine), raw vegetables, fatty meats like sausage, stress, going too long without eating, and menstrual cycles. Some women have benefited from hormone treatment, particularly bioidentical hormones.
HI, Is SOD CAUSED by gallbladder removal or already there anyway, causing the symptoms which lead to gallbladder removal ( misdiagnosed as gallbladder instead) and then diagnosed after the GB is gone as it can no longer be the cause?
thanks
SOD is most prevalent in women who had their gallbladders removed. Some doctors believe SOD was always there and surgery triggered the condition to worsen. From my personal experience and hearing from other SOD patients in support groups, I believe (and this is solely my opinion) that some people do have SOD prior to gallbladder removal, but most develop this condition as a direct result of gallbladder removal. For me, I had some gallbladder symptoms. Nothing terrible. After my gallbladder was removed the pain that developed over a few weeks’ time was excrutiating and absolutely nothing like the dull pain I had prior to my gallbladder removal. Plus, the pain I had prior was a dull ache under my sternum. Once the gallbladder was removed, it was a very sharp intense pain under my right rib that radiated to my back and shoulder.
Hello,
I felt I need to post. I found quite emotional finding this website, I have been looking for help or support and infect anyone with the condition that understands the pain etc. I live in the U.K. And very little in known about it over here, the triggers and how to cope etc.
I have my gallbladder removed after giving birth to my daughter in 2013 since then I have had the condition although it took a year to diagnose with several hospital trips. I have had two Ercp operation where they have cut it and it has healed both times. Once I had pancreatitis which is the most painful frightening thing I have experienced. I have two kids and I get quite low and scared when I go to bed not knowing if I’ll have an attack and how to cope with kids. The surgeon is reluctant to do the surgery again and I now have two kids.
No one understands the pain and anxiety of it all. I’m only 32 and wondering if this is it for the rest of my life. I honestly think if I have these attacks when I’m 70 still. It’ll kill me. I haven’t lost weight from it, just my liver weddings are all over the place which I’m told is ok and then it’s just the unbearable pain I have to deal with.
Hello Lisa,
We are in the U.K. Also & my daughter is just 21 April, she has SOD 3 & is having a terrible time.
Like Brooke been told in her head mother daughter issues you name it she has had it said.
GB removed Jan 2017, non functional so out, 3 days later all hell broke out, pain vomiting couldn’t eat or drink.
She had been poorly a long time had acid reflux & hiatus hernia, after years of in & out of hospital & no drs willing to help a private dr put a link implant in to Fischer acid reflux & he fixed her hernia. She was very ill after surgery & described the pain in her back as she swallowed, he did the hydra test & found the GB not working, all those years and no one would listen to her but he did, So GB out then SOD, who knew!!
So she has been to a couple of specialists one did Botox but she came round on the table and they had to hold her down so it was traumatic for her & painful, it partially worked for a month,. Went to another specialist as the one who did it would not do the planned second one, he & she had lost confidence in each other after what happened on the table.
Second specialist agreed the first one had worked in part and due to her coming round being held down fighting to pull tubes out, strong possibility not all of the Botox went into the right place.
So second lot by him should of happened on Tuesday, procedure was cancelled day before, no longer allowed to perform it.Thats it temporarily banned!!!
So she is distraught, going to see another specialist in Londonon Tuesday 23/5 & hoping he will really nderstand her pain.
He has been recommended by and A&E nurse who has type 3 SOD & he has her on medication and she is ok.
My daughter was in A&E everyday just over a week ago due to the pain, on 30mg of morphine to try and control it and bring her out of the spasms, the dr said she can’t live like this and the pain team have got her on Tramadol more before bed, Amitriptlyine 50mg at bed time anti acid, and oramorph little and often all thr
oughout the day to keep the pain at bay from the massive episodes of pain.
So for the first time she got into work this week for 3 days, but on that amount of medication she feels like she is floating, not good and still can’t eat or drink properly.
SOD is so very real and after reading Brooke’s Blog we will be asking a lot more questions on Tuesday, so thank you, kindest regards C.
I am so sorry your daughter has SOD. I’d like to address a few things. 1. Your daughter’s response during the procedure is actually the fault of the doctor and anesthesiologist. If they had her well enough sedated, that shouldn’t have happened. In the US, they use a combo of fentanyl with either propofol or versid. Not sure what they use in the UK. 2. Morphine is a known SOD trigger. It is the absolute worst pain med for SOD as it causes sphincter spasm. It infuriates me to here so many SODers in the UK being given morphine. Oxycodone, demerol, synthetic morphine, tramadol are better narcotic choices. 3. The combination of tramadol with amitriptyline will surely cause brain fog and drowsiness. Nortriptyline seems to produce less drowsiness than amitriptyline. You may want to ask about it. I talk about natural remedies in my book, The Sphincter of Oddi Dysfunction Survival Guide. It is available on Amazon UK. You may want to get her the book. Again, so sorry she is going through this.
Lisa, I know the pain and frustration you experience. Not sure if you’ve gone to the http://www.sodae.org page, but there are some great articles and links to support groups and my SOD book. Don’t give up hope. It can get better!
I am male 35 and have been dealing with SOD right-sided pain since April 2015. Had my gallbladder removed June 2016. Just recently, pain has shifted to my center back and causing sharp pancreatitis-like pain. Finally got an SOD diagnosis 1 month ago at Johns Hopkins and ERCP has been recommended by Dr. Kalloo (familiar with SOD). What is your experience with Johns Hopkins, or would you prefer I stick with your recommended SOD network doctors?
Johns Hopkins has been hit or miss for patients with SOD. I was under the assumption they weren’t even diagnosing SOD anymore, so consider yourself lucky. This is why they aren’t listed on our SOD doctors list. However, if they are willing to do an ERCP, I’d say stick with them.
Doug: I am seeing John Hopkins now. I believe SOD is my diagnosis but I don’t see the doctor until May 31, 2017 at which time I will discuss my SOD suspicions. Have you had the SOD procedure yet? If so, how did it go? Thank you,
Connie
You are an inspiration to me. i am just learning to be a proactive patient. Your article is a major motivator for me to continue to solve my own little medical “mystery” from which i have been suffering from from birth. Thank you.
I haVe this rib cage pain full feeling nausea weakness light headed gall bladder removed 5years ago cold and hot fever vomiting bile whole lot of tests showed nothing.
It is common to have normal test results with SOD. I recommend you read my book. Info is at http://www.sodae.org. You could have SOD or something else. Sorry you are suffering like this.
I have had pain on my right side, under ribs for 3 years and was told it was from my lumbar fusion by several different doctors. Could not sleep on right side. Gallbladder has been removed. I noticed it was getting a lot worse 5 months ago when my liver enzymes were abnormal, bad taste in my mouth, nausea and feeling like a balloon was being inflated where my liver was, then after eating severe pain. Had a ultrasound 5 months ago which showed 17mm dilated bile duct. I also have non alcoholic fatty liver disease. Had a EUS 3 weeks ago and was told it was normal. Doctors have treated me unprofessionally, passing me around like I do not matter and they do not believe in SOD. Live in Calabash, NC. Been to the ER twice in the last month with no satisfaction. Now I am being referred to MUSC in Charleston, SC. The pain is getting worse and now I must sleep in a recliner. Why do I feel pain and this inflated balloon feeling under my right rib and towards my back? CT scans show nothing. Can a dilated bile duct come and go? Pressure under rib area is now constant and I can hear and feel fluid gushing under right rib area. This is scaring me because of the way I have been treated. Help Please!!
You can have little stones in the common bile duct. I had them several times and they were removed during ERCP.
Make sure you don’t have a fever, if you do,go immediately to your ER where they should do a blood test to make sure your liver and pancreas work ok. This can be dangerous.
Don’t eat any fried or fatty foods. Also no alcohol, carbonated drinks, coffee, tea, chocolate, no sugar either.
Eat everything steamed. Buy the largest in diameter steamer you can find and put all your cut up veggies, including potatoes, sweet potatoes and you’ll find it very easy.
See how you feel after that.
Oh, you could be passing stones!
Try using a hot water bottle, it will relax you.
All the best.
Yes, a dilated bile duct can come and go. It certainly sounds like you have SOD symptoms. I hope MUSC can help you. They are pretty good but skeptical of SOD. Since you have had a dilated bile duct and abnormal liver enzymes, insist they consider you for an SOD diagnosis.
Brooke-I have posted here before and appreciate so greatly your response. I have had 6 ERCP’s now, with varying degrees of success. 5 of these were done by Dr. Freeman here in MN where I live. The last one I had was 10 days ago where 3 stents were placed in the biliary duct in order to stretch this open. I had this same procedure done Dec. of 15 with stents removed a month later. I had periods of complete remission with flare ups every so often to make live manageable. Then, this past November things started to wear off which led me to this last ERCP. This time, relief only lasted 7 days as I ended up in the ER a couple days ago because of very painful contractions/spasms in the RUQ. Freeman thinks this has clogged up and scheduled me for stent removal in 4 days. The word sludge/debris has come up often on my reports. And….it seems like the best results I have had is when a single stent has been place in the pancreatic duct (2 times). Not sure why he won’t replicate this again since it worked for the entire duration the stent was in (4 weeks). Like you, the stenting just does a temporary fix. Knowing this, what type of surgery would I be a candidate for? At some point I just can’t keep going through stents in/out and all the stuff in between. Thanks!!!
Hi Bret,
So sorry I didn’t get back to you sooner. Many GI docs seem to be moving in the direction of doing fewer stent placements and sphincterotomies. Honestly, if I were you I’d seek a consult for a biliary roux en y from a surgeon, preferably one who does it laparoscopically. I know of many SOD patients who get relief from this surgery. I had the transduodenal sphincteroplasty. It helped me. However, for SOD patients with biliary issues and spasms, the biliary roux en y seems to have a better effect.
Hi Brooke, following up here for more of your wisdom. I never had the 4 stents pulled as I alluded to in the above post from earlier this year. Things abated enough where Freeman wanted me to have those stents in the biliary duct for 6 weeks to get the stretch needed. I had those pulled out Mid Mach of this year, and went almost 6 months of symptom free living! Unreal how that feels when you are so used to just managing and pushing through daily life. But, as of 3 weeks ago I think things are wearing off and the same symptoms are popping up. So…Freeman said we can do the 4 stent placement again and replicate things since I did have relief. But this is all temporary. At my past appointment 10 days ago he didn’t seem like a fan of the bypass surgery. But it sounds like the folks you know who had biliary issues and success with stents benefited from this surgery. Really confused. If I can have stents placed/removed every year in order to feel good, fine. I just think this will wear off sooner and sooner the more I do this. Comments?
I had a great career histologist for 15yrs I had 3 child pain in sternum area unreal had gallbladder out and steadily got worse end up at John Hopkins hospital had sod and pancreatitis was in hospital 3 weeks lost 26lbs and came home on TPN for 6 mths I lost down to 113lbs I’m 5’4” I really thought I might die I’m still Sickly have chronic pancreatitis and a problem my pancreas duct just slowly close so I have had 37 ERCP since 2005 to either stent or remove stent or to balloon duct been awful. My only choice now is complete pancrea removal, part stomach removed, part colon removed and whole spleen removed with islet transplantion into my liver. If you Brooke know of any other things I can try please reach out to me. Thank you.
Vickie,
So sorry you are facing a possible TPAIT surgery. If your pancreas is damaged enough, surgery is, unfortunately, the only option. There is no cure for chronic pancreatitis and it is a progressive disease. The pancreas does not regenerate like the liver. I know many people who had the TPAIT and are doing well and not diabetic. I think your doctors may want to remove your pancreas before your insulin islets go bad. In that case you would become a brittle diabetic, whereas the TPAIT will at least afford you the opportunity to have insulin produced via the liver. I wish I had better news for you. You can always get a second opinion from another pancreas center. Here is a list of pancreatitis centers in the US: https://pancreasfoundation.org/npf-centers-info/pancreatitis-centers/.
My sphincter of oddi dysfunction was cured after I made sure carageenan wasn’t in any of my food/drink. It took a long time to figure it out after an elimination diet. My doctor was so shocked I was able to figure it out and noted it so he could recommend to future patients. Maybe it will help others out there too!
What foods is tht in?
What is carageenan
Jessica, you may just be onto something there! I’ve been dealing with SOD symptoms since I had my gallbladder removed back in 1999. No one seemed to know what it was. Recently, I switched to Almond milk because I thought my symptoms were being caused by a lactose intolerance. Instead, my symptoms got a LOT worse. It turns out that Almond milk is high in carrageenan! I’m going to eliminate it from my diet now after reading this and see what happens. Thank you so much for the info!
Thank you for all the information about SOD. I have never left a reply on a website before. I have been diagnosed with SOD Type 3. I had a leak when I had a Sphincterotomy with serious complications. I would like to know if leaks are very common, and what kind of complications are common. Also, is an ERCP with Sphincterotomy. painful and do most people stay overnight in the hospital? Thank you, Nancy
Really the only reason you would end up inpatient/overnight is if you had acute pancreatitis, an infection, a complication, or pain couldn’t be controlled. There may be pain after the sphincterotomy. I had pain but it improved.
i need help in colorado they think I have epi,i am type 2 diabetic lost 53lbs since october gallbladder out feb 2016 sick ever since getting eus next month,does your book detail wherde i can get help? looking currently for functional or acupunture the medial drs have no clue
Did you order and read the book? There is a lot of great info in it. You can also go to http://www.sodae.org to find an SOD doctor and read the blog articles. Hope it helps.
Where are these Docs that believe in doing the procedures on a III SOD? I am so ill over here and cant get anywhere. I seen SOD specialist yesterday that rushed me out claiming my elevated Liapse was probably caused from Vomiting. I have been vomiting since Feb! Surely if that was the case it would have elevated it BEFORE NOW! I just need help getting to the right people and I am in Texas.
Hi Mindy, I am so sorry you are getting no relief from doctors and that your doctor actually thinks that your increased lipase levels is from vomiting. That is absolutely ludicrous in my opinion. If you go to the website, http://www.sodae.org, you can see what doctors are near you and get a second opinion. I unfortunately had to travel halfway across the country to find a doctor who would treat me and my SOD 3 (Dr. Freeman). The only thing I can recommend is to read my books (information is on the website) to see what natural treatments and medications could be helpful. It might make some sense to where your symptoms are coming from. Increased lipase levels is usually due to pancreatitis. You could also have chronic pancreatitis and it most definitely can be caused by your sphincter spasming.
Hello Brooke,
In August I was hospitalized for a week w what they thought was a mass in my ampulla of vater. My liver enzymes were elevated, I could not eat and was vomiting. They also noticed my bile ducts were dilated. I had my gallbladder out over 10 years ago. I was experiencing excruciating abdominal pain that was worse when I took pain meds. They did an Ultrasound, CT scan, EUS, MRCP and finally an ERCP with Sphincterotomy. They eventually diagnosed me w Sphincter of Oddi dysfunction after the mass biopsies came back ok. Since August I have not been able to eat solids and have lost 35lbs. Luckily I was a big girl. But not so much anymore. The GI people are total crap. I work in the medical field and used to work where some of the best people for this Dx is but moved to NY. I am on no medicine, they basically have done nothing else for me and don’t care that I cannot eat. They just say that they fixed me and maybe I should see “someone” aka a therapist for my issues. I normally am the one to advocate for patients but I am lost. I had a CT scan on Friday w an oncology doc but he won’t treat the weight loss or inability to eat. He says I need a GI doc- he is just checking to make sure the area where they saw the “mass” is now gone after they did the Sphincterotomy.
Who did you go to to get your surgery? I have no desire for surgery but not sure what else to do??
Thanks,
AG
I found your site and I have been suffering for 4 years, all tests come up normal, they sent me to the pain clinic and have been taking pain meds for years, I know they were causing my lower gastric pain but not my upper left right and center pain. Now there now tell me I need to get my gallbladder out but I had a HIDA scan and it tested at 73, I get sick when I eat under my ribcage, left right and center, in 8 Weeks I’ve lost 25 pounds and I am only 110 and 5 foot tall, so I don’t have a lot of weight to lose. I take meds for gastritis, but stopped taking the pain med 20 days ago today! yeah after 4 years on them, proud of my self but its really hard dealing with all this. I have just seems to get worse, I don’t know what to do should I let them take my gallbladder out? could I have SOD?
Hi my name is Kath and I’m from the uk. All your symptoms are exactly the same as mine and I too had a HIDA scan from which they gave me the diagnosis of SOD. Whatever u do do NOT let them take your gall bladder out! It can make it worse!!
I had my gallbladder taken out 7 weeks ago and I just have a question about SOD, why is SOD common after gallbladder surgery?
I don’t have SOD but I do have anxiety and I can’t shake the feeling that I’m going to get SOD as I’m 35 year old female with no gallbladder.
I spoke with my GI surgeon who performed the surgery and I asked him about it a week after my surgery and he said that I didn’t have it but I still want to know why it is common after gallbladder removal.
Thanks
There is no research pinpointing exactly why women without gallbladders are most likely to get SOD. You may want to read The Sphincter of Oddi Dysfunction Survival Guide (info at: http://www.sodae.org/sod-book.html) as there is an entire chapter on what is SOD and possible causes/theories. You would know if you had SOD. The pain is sharp and other symptoms can accompany it. The book also talks about diet and natural ways to treat SOD, but actually anyone without a gallbladder can benefit from reading it.
Hi .So happy to find this site ..I have self diagnosed Spinchter of Oddi Dysfunction..I had my gallbladder out 20 years ago , and kept having another ” gallstone attack ” if I take any medication containing codiene ..My question is …I am having a hysterectomy in 2 weeks , and so worried ( panicking !! ) about what pain relief they can give me post operatively that won’t cause spasms ?? Any suggestions ..?? Thank you ..
Toradol is a non-narcotic NSAID medication. That may be your best bet. If not, stick to dilaudid as a narcotic.
Can you please tell me if Toradol is available in the UK? I am so relieved to find a site where SOD is actually recognised. I had my gallbladder removed 2.5 yrs ago. No gallstones were evident and an earlier HIDA scan was clear. My bowel went in to spasm after surgery and one of the three incision sites did not heal for months. Over a year ago the pain in my shoulder and back returned on a regular basis plus small, but violent spasms under my right rib at night. Eating became a problem, it was more like having had a gastric band fitted. From February this year I have been unable to work, have had repeated visits to A&E and urgent care surgical, and will lose my job by the end of the year. Ultrasound in March at a private clinic showed 9mm dilation of extrahepatic biliary tree and said I would require a lot more tests. Any NSAIDs make the pain even more severe. Had an MRCP without contrast in April at my local hospital, which only showed a cyst on the liver. I was given tramadol but my liver was swollen and with the pain I could hardly walk. Endoscopy in May by the surgeon who did my original surgery showed duodenitis, but my gastritis was clear. The sedatives from the procedure made me very ill and I continued to be violently sick on both omeprazole and lanzprazole for weeks. Dr resorted to liquid morphine as I told him I could not cope with the pain and I ended up in urgent care. The spasms were so violent I was crawling around on the floor. This surgeon has now been struck off and after seeing a pain specialist in June, she is adamant that all my symptoms are due to SOD and I should not be left in this much pain for such a long period of time ( muscular pain has previously been listed on all my hospital notes with the surgeon). She tried me on nifedipine but the spasms were even worse, it was like being constantly stabbed and I was back on a liquid diet for weeks. I saw a new surgeon two weeks ago and have just had a CT scan with contrast and am awaiting the results. My biggest worry is that he feels I am depressed, stressed and suffering from IBS! He admitted to me that the majority of surgeons do not recognise SOD. Even said my bm’s are ok even though they are bright yellow or light sand colour. I now have muscle atrophy and require regular physio support. I have to take a lot of buscopan which helps a little, but cannot take amatriptaline as I have Graves disease. Even imodium causes a bad reaction. The only herbals I take are chelidonium and lycopodium. Having read your book, I feel I now need to request a third consultation, preferably with a hospital who have an adequate liver unit, possibly in London and who will acknowledge SOD or related symptoms. I am not on facebook due to my employment with a school, but would like to chat with anyone who recognises these problems and if they have any suggestions for further anti spasmodic treatment. I do have regular cranial osteopathy and have tried acupuncture. Many thanks
Hi annie, I live in ormskirk Lancashire. I have SOD. I too use to work in a school so understand why u are not on Facebook. If u ever want to chat I am here. I’m waiting to go to see a man called Mr Makin in Manchester Hope. With regards to having Botox. Just chat away if u want to!!
Hi Kath I too am waiting for an appointment at Manchester royal for suspected SOD – I have been in pain since September I’ve had tons of tests at my local hospital but feel really fed up with the unrelenting pain . Would be really interested to know how long you waited for an appointment and how it went thanks Maria
Sorry i Stand corrected it’s mr Makin at Manchester royal infirmary.
Hi i still have my gallbladder i am 11weeks pregnant. I had a gallbladder attack with last pregnancy. I ended up in hospital 2 days in a row with sever sharp pains in the center of my stomach right under my rib cage n kinda went off to both sides. I have episodes of extreme hot n cold and had bloody diarrhea. They did blood work ext…. everything came back normal i ened back up there the following day with same problems they gave me something for ulcers and got me an appointment with the GI. The pain since ive taken the medication has gotten little less severe but i have been sick a few times since i feel nauseated alot of the time. The GI didnt really have much to say other than he thinks cuz im pregnant my Sphincter is relaxed and then being pushed on and is releasing acid where it shouldn’t causing the pain. He said just continue on as im doing and if nothing changed in 2 months then call
My pain episodes actually improved during pregnancy so that would surprise me the sphincter would relax. Have you had a workup for pancreatitis (elevated enzymes)? Try taking some magnesium or other natural remedies in the book I wrote on SOD: http://www.sodae.org/sod-book.html
I was taken to hospital in an ambulance yesterday after acute pain, spasms and vomiting following taking some cough medicine containing codeine.
I’d had a few episodes before but none as bad as this and all I could think of as I experienced the agonising pain was that it felt like gall bladder pain again – but couldn’t be as I had my gall bladder removed 7 years ago.
The medical student and doctors went through rounds and rounds of questioning trying to work out what I was experiencing when thank god a lovely nurse, same age as me, told them that I might had SOD as she also had her gallbladder out years ago and had experienced the same symptoms. They looked it up and concurred and advised me to avoid any medication with opiates / codeine / morphine.
Reading your article helped me immensely and gave me a name to put to my symptoms and a way of explaining to my husband what I am going through when I get these awful attacks.
It’s frustrating to read about the ignorance that exists around SOD as I experienced the same whilst having frequent gall stone attacks for 3-4 years – I was never diagnosed by doctors or hospital staff as I was ‘too young’ and ‘not fat enough’ to have gall stones. I eventually diagnosed it myself from a book of medical symptoms, insisted my doctor investigate it and I was then given an ultrasound, confirmed diagnosis of gall stones and had the operation the following week and lived pain free for the first time in years.
Until now! At least my SOD seems mild and I know the triggers so hopefully that’s the last attack for me.
Thanks for listening and good luck to you.
It is common for narcotic opioid pain medication like codeine to cause a sphincter of oddi attack. I encourage you to check out my site: http://www.sodae.org. I have also written a book called The Sphincter of Oddi Dysfunction Survival Guide: http://www.sodae.org/sod-book.html. Best of luck to you!
Wondering if someone can explain this malady that I seem to have with SOD flare ups….sweating profusely when exercising. I am an avid runner, and still try to do as much as I can in spite of dealing with this. When I am in a flare up, I sweat WAY more than normal, and it smells different. Would this be my body needing to rid itself of toxins of some sort? Definitely a correlation here. Just waiting to see Dr. Freeman on 9/7 to see what my next step is in dealing with SOD. Thanks for reading!
I personally have had major issues with night sweats and everything shows up perfect in my bloodwork. From my own experience, research, etc. I believe there is a connection with SOD and an effect on the adrenals and HPA axis. Adrenals and HPA axis issues can cause side effects like sweating. My adrenals pooped out during the worst year of my SOD. Naturopaths can test for adrenal issues through saliva testing. Nourishing the adrenals is important. Supplements like phosphatidylserine, rhodiola, and ashwagandha are helpful. Also, mega doses of vitamin c nourish the adrenals. I take up to 3-4 grams of vitamin c a day. You can take as much vitamin c as your bowels tolerate and should space out taking it throughout the day and evening as it gets flushed from the system quickly. If you start getting loose stools that is how you know you took too much vitamin c. How did things go with Dr. Freeman? I suggest you get my book, The Sphincter of Oddi Dysfunction Survival Guide. http://www.sodae.org/sod-book.html
Thanks Brooke, I did get your book as well and love it. Dr. Freeman was hesitant to schedule another stent placement for me at my last visit back in September. As I have experienced before, these cycles come and go depending on what I eat and how much. At my 9/7/16 appointment I was feeling pretty good, which of course made me him not want to do surgery again. Of course as I write now I am back in a flare up sparked 3 weeks ago by having a large meal. So hard to stay true to these dietary rules when you feel decent, a false sense of security. But…..Dr. Freeman wants me to make sure my colon is alright as I had indications of diverticulosis 4 years ago as I started down the path of having my GB removed. So I will have another colonoscopy in 3 weeks. Freeman isn’t sure the bile ducts are the origin of my problems or a result of something else. Having a lot of brain fog with this relapse, more so than others. Does this approach make sense to you?
So weird I have the same thing! I’ve had to cut way back on the intensity of my exercise unfortunately as I believe that is also what was causing me to have flare ups. I’ve been Interested to know how that doctor apt went???
Is there a such thing as an SOD specialist????
What is the best way to find a good doctor to treat this condition?
Go to: http://www.sodae.org/sod-doctors.html. Most of the doctors on here still treat SOD. I wouldn’t see anyone not on this list.
This is such an insidious disease. I had my gallbladder out in 2000 and since then I’ve had 10 bouts of pancreatitis and I am three days out from my third sphincterotomy. The doctor is baffled because he’s completely blown open the ducts and they keep forming a stricture every time. The longest I’ve been able to go without issue is two years then out of nowhere the ducts spasm and narrow. There is no warning I just double over in pain and I know what I’m in for. This last time it woke me up from sleep. I was in so much pain I couldn’t move or I would have thrown up. I tried every medicine I had plus aloe juice, essential oils and even went to the chiropractor in hopes the ducts would calm down. Unfortunately nothing worked and I had a sonogram which indicated I needed another ERCP to cut the ducts again. The recovery sucks as much as the issue itself. Still in pain and even a drink of water causes the ducts to spasm. This makes working difficult. I gave up full-time teaching and now sub on days my stomach behaves. I guess I’m lucky I have that to fall back on but I can’t imagine how I could ever work everyday as I have no control over when I feel good. I haven’t eaten fried foods, red meat, gluten, or high fat foods for years. If I do I might as well walk myself into the ER as that’s where I’ll end up! I’ve seriously considered having my doctor just put a port in and I’ll just put liquid meals in that way. I had the TPN once before and I’m at a point where it just may be better. I would love to get together a support group in my area where we could toss out ideas that help one person to the next and just vent. I appreciate your information and that you’ve taken the time to condense info for all of us. ??
Hi my name is Andrew, I am 49, Married, Male, British and have type 2 incurable. I have lost many things like my career as you describe. I was wondering if you have tried the Fodmaps diet. If not give it a go, clearly after checking the interweb etc. It seems to me that SOD is effected by what we feel (stress etc), what we do (exercise involving jumping about etc a no no) and what, how much, and how fast we eat. Have you found any useful do’s or do NOT’s?
Andrew, you may want to check out my book at http://www.sodae.org/sod-book.html for more information. There are chapters on diet (includes info on FODMAPs), natural remedies, medications, procedures, etc. For the UK you can find it on Amazon UK.
I forgot to mention that when this all started, it started with elevated pancreatic and liver enzyme levels.
A Dr. at North Memorial in Mpls., first sent me to see Dr. Joseph Geenen in Racine, WI. Because he was the best at the time with doing stenting. Do you know if medicinal Marijuana would help with the pain, nausea, and spasming.
My sister tried while visiting us in Oregon. Unfortunately, it did not. Just CBD and CBD with THC but niether worked.
I am currently using Medical Marijuana for this. It helps so, so much. I would not be able to function without it. I use a vaporizer with hash oil.
Brooke Keefer: I have struggled with SOD ever since I had my gallbladder out in 1986. I’ve had sphincterotomy and sphincteroplasty, and still have terrible pain, spasming and gurgling under my right breast, which is the upper right quadrant. The first ERCP was done by Dr. Geenen in Racine,WI. with multiple stents, which always migrated out because my ducts were so spastic and then had a sphincterotomy. And the surgery was done at the Mayo Clinic by Dr. Nagorny in 1993.I had quite a bit of relief,until 2012. The area had scarred over, so went to Dr. Freeman at the University of MN. The area had scarred over.
He stretched the area open and put in a temporary stent. This helped for a little while, but I still had spasming, pain,nausea, and gurgling in the same right upper abdomen.
I’ve had another ERCP, but the area was open, butI still had the pain, nausea, spasming, and gurgling. I’m set for another ERCP next week at the University of MN. with Dr. Amato, since Dr. Freeman is gone the next 2 weeks. I do not know if this will do any good, but am at my wits end, as far as what else to try. I’ve been sicker again for almost 2 months, but had to wait until now because my Mom passed away the end of June, and it is hard to get in to see Dr. Freeman. Do you have any other ideas. I know I fit into Type 1, 11 and 111 types of SOD.
Hi Linda,
I am so very sorry you have had SOD for so long and had all the treatments recommended. Well, except for the biliary roux en y. Have you ever discussed with a surgeon the possibility of this surgery? It pretty much obliterates the sphincter area. Before jumping into a surgery like that, I recommend you get my book, The Sphincter of Oddi Dysfunction Survival Guide. Go to http://www.sodae.org/sod-book.html for information on how to order. I am only telling you this because you can read my full story and what has helped me since the sphincteroplasty, as well as chapters on natural remedies, diet, medications, and the biliary roux en y surgery. My surgeon wanted me to have the biliary roux en y a few years ago because like you I still had symptoms. I can’t have another ERCP because I nearly died from acute pancreatitis and sepsis as a result of the ERCP. I have found natural remedies to help especially seeing a naturopath and functional medicine practitioner. Medical marijuana is discussed in my book and it absolutely helps some people. I found that bioidentical hormones, magnesium, and deep breathing help. Best of luck to you and please get the book and try alternative methods. I found conventional doctors were making me more sick and damaging my pancreas more.
Thanks for your response. I am at the point of trying anything. I do want to give medicinal Marijuana a try, since pancreatic enzymes made me sicker for some reason.
It’s trying to find a Dr. to write a prescription, to take to a distributor. I do have another ERCP , this Tues. and it turns out Dr. FREEMAN, is going to be the Dr. doing it.
It is always a risk, sometimes I’vebeen hospitalized after it, because of getting pancreatitis. Other times not. It just depends how much work has to be done, once he gets in there. I am probably going to order your book. It sounds like it would give me some help. Thank you.
Linda-Really curious how this last ERCP went for you. I am schedule to see Dr. Freeman on Sept. 7th given me similar situation. Have you ever had periods of remission w/o any stents in you? Like you, I had success with plastic stents for short durations, and the some success after having 3 stents placed to stretch the duct opening. Sludge and debris are words Dr. Freeman has used to describe what he has seen internally. I too have my GB out. 7 months after that removal was when all the fun started for me. I have been really struggling the past month now after having a few months of relief.
This is really helpful. Could please give me some dietry advice. I am trying to sort this out for my brother. I would be grateful if you could tell me what he can eat and what he should not eat. Thank you so muc
h for your time. Kind regards Meg
Hi Meg,
I just wrote a book on SOD which has entire chapter about diet. More info about it is at: http://www.sodae.org/sod-book.html.
Hope you can find things that help your brother and I am so sorry he has this awful condition.
Brooke
Acute idiopathic pancreatitis started in 2003. HIDA scan was inconclusive but they decided to remove GB just in case. The night after surgery I had to return to hospital from low blood pressure, turns out I had lost 7 units of blood from internal bleeds. Got transfusions and spent week in hospital. Pancreatitis continues over next couple of years. New young Dr comes to town who does ERCP/EUS. On first ERCP I awake from anesthesia due to pain and yank on endoscope after Dr inflated balloon in bile duct. A nurse was running the anesthesia. Now all patients get Anesthesiologists. Spent a week in hospital with severe pancreatitis.
Over next couple of years had multiple ERCP/EUS/needle biopsies. Diagnosed with chronic pancreatitis. Finally begged for SOD sphincterotomy as relief from ER/hospital stays/financial pressure/stress. Doc agreed, but when I asked about manometry he said difficult to perform and results aren’t reliable, so we do the sphincterotomy and I get pancreatitis again because no temp stent was used during sphincterotomy. Eventually no improvement, still getting pancreatitis. So next is sphincterotomy on pancreas spincter. No improvement. A couple of years later a 2 cm lesion shows up in the tail of the pancreas. I insist on seeing a surgeon. Robotic distal pancreatectomy is started but converted to open because the spleen can’t be seperated from Pancreas. Pathology report confirms IPMN (intraductal pancreatic mucinous neoplasm), a precursor to adenocarcinoma. Next 3 years are golden, great digestion, no pain, no pancreatitis. Then last year severe heart burn and constipation started. Endoscope and colonoscopy show antral gastritis probably due to bile reflux. Tried PPIs, bile sequestrants, sucralfate, anticholenergics without help. I mention Roux en y but doc says too radical, but I’m worried about stomach cancer… Bottom line, if you are considering sphincterotomy, go to a tertiery hospital even if it requires travel and out of network charges.
Thank you for your comments, Steve. So sorry for all you have been through. It is awful how some hospitals drop the ball with SOD and pancreatitis patients. I found I had low stomach acid issues through my own research–the bile reflux made it worse. Our bodies need stomach acid: https://www.hormonesmatter.com/importance-stomach-acid-antacids-make-you-sick/. I take Country Life brand Betaine HCL with pepsin and Creon pancreatic enzymes. They help so much.
Really wondering if I can get some feedback here on anyone who has had either botox injections for SOD dysfunction level 1, or a metal stent placement. I posted here 6 months ago when things had flared up on my and my GI (Dr. Freeman here in MN where I live) mentioned those 2 options given I have done the ERCP (5 times) with mixed results. Seems like I have a few weeks where things are great, and then a few weeks of the terrible symptoms mentioned here where each day is a grind. Just can’t take this cycle anymore and would really like to understand how the botox or metal stent has gone with someone else. The plastic stent did well for me until it clogged up which tells me something more robust like a metal stent would have a chance to help. Comments? I am a 53 year old male with GB removed 3 years ago….which of course is when the SOD started in.
You may be interested in joining an SOD support group I run on Facebook. There are quite a few people who have had the botox and metal stents. Most who have good results with botox have to have it done every 6 months or so. If your problem is mostly biliary, then metal stents can be very helpful. The people I know with both biliary and pancreatic sphincter issues usually don’t do as well because the pancreatic sphincter is still spasming shut. Here is the FB support group link: https://www.facebook.com/groups/SODAE/
Thanks Brooke. Curious how the pancreatic duct would still spasm shut if a stent were in place. I go back to my initial ERCP which was a stent in the P duct, and I had good results for the 4 weeks until it was pulled out. Then Dr. Freeman tried 2 iterations of inserting multiple stents with the hope of stretching it open and staying that way after those were pulled. That gave me mixed results. What was your experience with a metal stent? More pain initially? But, a longer period of relief? I am willing to go in and have something done every4-6 months if it means a more consistent level of health. Thank you for all you have done here!!
Thank you so much Brooke for sharing your story! I have been sick for 3 years. I had to have a full hysterectomy at 28 due to severe endometriosis and ovarian cysts and 6months after that I got incredibly sick fever of 104. I was hospitalized and was there for 10 days in that time while bedridden I lost 30 lbs. They told me I had Leukemia, then said I didn’t then said Lupus, then told me it wasn’t that. They said my ANA was positive my T-Cells in my bone marrow were rearranged but my liver biopsy was ok. My white blood cell count was down my liver enzymes were up, yet they had no clue what was wrong. Then suddenly they decide to do a hide-a-scan and they said my gallbladder was barely working so they went in and removed it and said by the time they got in there it had completely stopped working. I am now 32 yrs old I have been told everything from IBS to psychosomatic disorders. Finally I found my new PCP and he diagnoses me with Sphincter of Oddi however he hasn’t sent me to a specialist or actually done anything about it. He is just a small clinic but I have been sick for over 3 yrs I can’t work oh and within 6 months of the first hospital stay I lost a total of 90 less I weigh between 100 to 115 when I’m feeling at my best which isn’t saying much. I am supposed to be in the prime of my life yet here I am struggling to find an answer so I an at least have some semblance of a life. So again thank you because now I will push harder!! I am from near Springfield MO do u know of any Dr’s near here by chance that are good??
I am 41 and have had GI issues since I was a teenager. Tests rarely show anything. I dislike my local GI who told me I must have Crohn’s because I had one small lesion (which biopsy came back inconclusive). I had to go back to him when upper right pain started after my daughter was born. I had to insist on a HIDA scan. It showed that gallbladder wasn’t working at all. Got it removed. Twice since I’ve had horrible pain under right rib that was tender to touch and diarrhea. I had pneumonia in March and have had nausea ever since. Don’t want to go back to this GI Doctor. Husband tells me that I should change my diet. It’s all about my diet to him. It doesn’t seem to matter what I eat to me. I made an inquiry today to the GI department at Froedert in Milwaukee to see if they would give me a consult for SOD. I don’t want to talk to another dr who says it’s all in my head or make a guess and give me that awful powder to drink. My mom had her gallbladder out 20 years ago and has been having these same symptoms too. Her story with this GI doc is the same as mine. The ER always tells her it’s stress or all in her head too. Hoping the hospital has someone who can help and will listen and I’ll send my mom there too. Is there evidence that it is hereditary?
So sorry you are having these attacks and now the nausea. I would take pain over nausea any day, though I’d rather have none of them! Did you look to see about SOD doctors on this website? http://www.sodae.org/sod-doctors.html. Do NOT bother with any doctor who doesn’t acknowledge SOD. Even if they are on this list specifically ask the office staff if the doctors diagnose and treat SOD. I hope you can find someone who can help. As far as food, my husband and family would watch me like a hawk to make sure I didn’t eat what they thought was bad. It really got on my nerves and wasn’t helpful. They really just don’t want to see us sick. I know the feeling of doctors thinking it’s all in our heads. Awful. I don’t know about it being heriditary but in the support groups and SODAE Network Facebook page have definitely seen sisters, cousins, moms and daughters with it. We need research! Hope you get some answers and relief.
Thank you. The website for the GI practice I inquired with had a place to submit questions about their practice. I specifically asked if they treat SOD. It was after office hours so hopefully they respond on Monday or I’ll call. One doctor was on that list.
The last time my mom went to the ER with her SOD like symptoms, she mentioned that it felt like she had gallstones again and asked if it could be related to not having a gallbladder anymore. The dr said if it was related to that, she would be a lot sicker. She said I came to the ER in the middle of the night, but I’m not sick enough? So frustrating.
Thanks for your information.
My story sounds exactly like marys i have had pain 14 years now and have had ibs diagnosed and all sorts of horrid responses from specialists who tell me its in my head. I have had adnormal liver function tests off and on for years and always have a temp when my pain hits and the feeling of having been slammed in the right shoulder by a rugby player. My pain gets so bad i cant move my poor girls are used to it. I have however had the muscle cut but they say there is nothing else they can do.
It sucks and nz drs dont help
Sometimes a temp could indicate a touch of cholangitis–infected bile–which can happen with people with SOD. So sorry you are suffering. Check out my website for articles on natural treatments: http://www.sodae.org/resources.html. This may be your only options as it sounds like SOD doctors aren’t prevalent in NZ. Hope you feel better!
Hello male now 67 gallbladder out 4 years ago. All the above issues. 4 Gastro docs lot ercps. No answers pain pain. Any one in Flordia ? Please advise
So sorry to hear you have SOD. Are you seeking a doctor in Florida? If so, here is a list: http://www.sodae.org/sod-doctors.html. This site also has links to support groups on its resources page: http://www.sodae.org/resources.html.
I have had upper stomach pain for 8 years. I was initially told then that I had IBS. Then I was told it was my gallbladder which I had removed. That did not solve my problems. I then lived for 6 years without seeing a doctor as I was fed up of being told it was stress, IBS, I even got diagnosed with Porphyria and I thought finally an answer. I found a specialist and she said no I did not have the type that causes stomach issues. So then my life became a nightmare. I was given tramadol for a back problem and I took that and used ice packs, breathing techniques etc etc etc. Forward to now I ended up in the hospital in February because I could not take the pain and sickness anymore. This time my liver enzymes were elevated. Then the tests started again all negative. Today I asked the Gastro doctor I have been seeing if he had any patients with SOD. He did not answer but said that I would need to go to USF for testing for that ( I had been there 8 years ago and they sent me away with antibiotics and Pepto Bismol)and said they would not touch me. So my GI Dr then said the next time I have the pain get my labs done. This will be the 2nd time he has done this. The last time my liver enzymes were elevated also. At this point in my life I am sick and tired of Doctors and their absolute reluctance to believe that one the symptoms are real and two it is not stress or the next favorite Depression. Although I am stressed dealing with Dr’s and depressed that no one can tell me what is wrong. If you do not fit in a certain box then they send you off on your merry way. So that been said I refuse to go through the rest of my life like this and I wanted to know if anyone knows of a Dr in the Tampa bay area that is familiar with the condition and who will test for it? I would really appreciate any help. Thank you Mary
Been through everything you shared and felt all the same feelings–especially about doctors. This list has some doctors in Florida: http://www.sodae.org/sod-doctors.html. You may want to travel outside of Tampa though. I haven’t heard great things about the doctors in that area. It is worth driving or flying to see a decent doctor. I’ve had to do that. Hope you find relief!
My GI is actually listed on the SOD list for my state but they’ve given up on me and sent me to pain clinic where they did an ablation on my SOD muscle and the pain has not ceased. It appears I’ve had SOD since 2012 when my gallbladder was out as it was infected causing pancreatitis.
My pain is daily and I believe it becomes worse during menstruation. The pain goes straight through my back and my shoulder.
My daufhter has SOD III and had two sphincterotomies which only gave her relief for three months. She spent a lot of time in the ER once a month for severe pain two years ago. We went and saw Dr. Richard Kozarek up in Seattle who is a specialist with SOD. He recommended Botox via endoscopy which is done here in our town by her GI Doctor. . My daughter has had great success with the Botox and it’s done every 10 months. Good luck with everything.
Hi Carolyn,
Could you please tell me the name of the local doctor who does the Botox via endoscopy? I have been looking everywhere for a doctor who does it.
Thank you
Brooke,
Please tell me there is someone out there who has had a successful ERCP with Sphincterectomy that had been successful. I am an RN and everything I read is depressing. I am Type 1.
RN,
So sorry you have SOD type 1. There are many people who get successfully treated. The odds are actually better for you having type 1 than for type 2 or 3. Studies show SOD medications and procedures like an ERCP with sphincterotomy are very effective for people with type 1. Stents can be helpful too. Please visit the website I run at http://www.sodae.org. Take a look at the articles in the resources section and the stories of people who have SOD. Keep the faith and don’t give up hope!
Brooke
Like Brook I’m type 1 and have been working as a nurse for 40 years! I’m lucky (or am I?) it’s been diagnosed within 5 months of my 2nd bout of pancreatitis. I had a 3rd bout 6 weeks ago and the specialist I saw today put the story together. She said 90% of type 1 can be helped with ERCP & Sphincterectomy. I’m having an endoscopic u/sound next week and looking for more info before consenting to the recommended procedure. I’ll be downloading your book thank you Brooke!
Hi Brooke and thank you for sharing your story! I see you haven’t responded in awhile and hope you still check this site? I had my gallbladder removed approximately 1995 and never really showed any symptoms until 21 years later. Is this possible? Here is what started it all;
I did have a routine colonoscopy 2 yrs ago. At that time the Dr. did an abdominal exam, which was tender to touch. He said it may just be muscles pinching.
In May of 2015 I began to lose weight (started at 142 and leveled at 116). My Psych wanted me to check my health with my PCP. If all was okay, he was going to put me on Remeron. My Vitamin D level came back at 8, so I was given 50,000 iu Vit D2 once a week. After the 3rd week my symptoms started. All for D toxicity, so I stopped the Vit D… but still have those symptoms (except the supposed thrush”).
I am now down to 106 lbs. My food tolerance is very limited (fats/proteins make symptoms worse). I have pain mostly in upper left quadrant, but when examined…. my upper right quadrant is in excruciating pain. I have undergone all tests except the ERCP, which I have a consult for on the 20th. My CBD dilates to 19mm with an EUS. I will have the ERCP done at the University Hospital in Colorado. I hope they find that I do have SOD, because my tests all come back fairly normal. My ALT & AST were off, but because of no jaundice, I feel my Drs. think I’m crazy. I too admitted myself at one point to the psych ward, as I’ve been pretty much bed ridden since December.
It’s great to know there are others who have similar issues. I will def. join your support group on FB when able.
I did have a hysterectomy in 2004, so could it still be SOD?
Thank you and good luck to all!!
Hi Suzanne,
SOD can come on at any point, any age and any time after gallbladder removal. Usually pain that is more to the left could be stomach or pancreas. Since there is a pancreatic sphincter, you could be experiencing both biliary an pancreatic pain. Be sure to ask the doctor performing the ERCP whether they take any extra measures to prevent acute pancreatitis, which an ERCP can trigger. Usually an NSAID suppository and a stent helps. I hope you get some answers. It is such a frustrating condition.
Brooke
Thank you for your response Brooke. The Dr. is a bit hesitant to do the ERCP, as my pain doesn’t quite fit the model. He said I’m type 2. I have the procedure done June 2nd and will keep you posted. I can’t take NSAID’s as I’ve had Gastro problems since 2005. I hope I’m not doing this test for nothing. But no other explanations as of yet for all of my symptoms. I just want to eat again and gain some weight back.
Regards, Suzanne
Oh my, I wonder if I’ve just discovered my problem. I had my gallbladder removed in 1998, also. I was diagnosed with gastroparesis in 2004 but was fairly well managed until my daughter was born in late 2012. I started getting aching/soreness under my right ribs – if felt like someone had kicked me and it was bruised. I had CT, ultrasound, blood tests… nothing could be found. My PCP thought it might be pancreas related as my enzymes were slightly elevated but my GI said no, as the elevation was not significant enough. It eventually resolved after 5 or 6 months and came only infrequently after that, for a few days here and there.
Fast forward to this past December (12/15). I woke up one morning with an incredibly sore abdomen – just to the upper right of the belly button. By lunchtime I could barely sit up and I couldn’t zip my coat over my belly because it was so sore and tender. I went to the ER where they did blood work and sent me home without a diagnosis. I saw my GI doc two weeks later and he indicated it sounded like “just” IBS, probably intestinal spasms.
Well, it’s now been 4 months and it has yet to go away. My PCP did an ultrasound last month but that didn’t show anything. Some days I barely notice it, some days it bothers me all day, but it’s always there, feeling like a bad bruise in the upper right quadrant. When it’s bad, it hurts to sit, bend over, move around, lay on that side. Maybe it’s “just” IBS, but it sure doesn’t feel like it to me. I worry now about bad things like cancer and even blood clots in the lung after reading one unfortunate article.
Now I”m wondering if maybe it is this. I’m wondering, though, if the pain I’m describing… more of an ache, tenderness, bruised feeling… correspond with this condition or if what you describe is more of a sharp pain?
Any insight would be appreciated. Having an explanation for this would be really helpful…
Marie,
Having a mystery ailment is frustrating. This I know too well. SOD is so difficult to diagnose. Most labwork and scans are normal. I suggest you get a consult with an “SOD doctor” from this list: http://www.sodae.org/sod-doctors.html. Even if you have to travel it may be worth it. I run this website and there is a lot of information on tailoring diet to ease symptoms and which medications help. If you see an SOD doctor make sure they still diagnose and treat SOD even if they are on this list. Best of luck to you and hope you feel better.
Brooke
Dear Brooke,
Re. Difficulty diagnosing Painful Shincter of Oddi malfunction.
I had a definitive positive diagnosis following administration of hydromorphine for a vertebral fracture.
Increased pressure of the Sphincture of Oddi is a WARNING SiIDE EFFECT of this medication. My GI specialist had given a tentative diagnosis 2 years ago. The JOURNAL OF GI specialists published a review on the use of Opiods stating OPIOIDS NOT BE GIVEN TO CHOLECYSECTOMISED PATIENTS.
Isobel,
Yes, opioids are generally contraindicated for SOD. However, some report it helps their painful attacks. Everyone is different and some tolerate some opioids and not others. I had horribly painful attacks after I was given morphine in the hospital. But, when they gave me hydromorphone or something else I did ok.
Brooke
Brooke,
Good articles. Has anyone had any success with hormone therapy or trying magnesium, methionine, vitamin b6 and calcium? There’s a good article (from 2004 though), on Post-cholecystectomy Syndrome and Magnesium Deficiency: ncbi.nim.nih.gov/pubmed/15637226 Please let me know what you all think. Best wishes. Kate
Hi Kate,
Thanks. I know several women with SOD who benefit from magnesium and hormone therapy. I don’t know about the methionine, b6 and calcium. Many with SOD have both biliary and pancreatic issues. Magnesium can calm the sphincter spasms and relax the sphincter muscle. It has been researched that methionine and antioxidant therapy of selenium, vitamin c and e help pancreatitis. Calcium may not be wise for those with SOD who also have pancreatic issues because of calcifications that can form in the pancreas. It can be constipating too.
Brooke
I have been struggling on and off for 18years. I will have a flare up, have an Ercp, dialiation,stents, sphincerotomies and now have chronic pancreatitis. In March my symptoms started again and I’ve been hospitalized 2 times. They have run every test and everything comes back normal, expect my blood levels keep going up and down. My GI doctor has pretty much given up on me. There’s no room to cut the sphincter anymore and my pressure was fine on March 12 , but he dialated anyhow.He says the SOD pain only comes and goes and isn’t constant…. He finally agreed to make a referral to a surgeon. I go tomorrow. I’m hoping he with do a sphinterplasty. Are you glad you got yours done? Is there another procedure that can help the constant pain? I’ve also had a nerve block that did help at all.
I have been taking magnesium,calcium,b complex for a few years and this is not helping either. . Morphine helps with the pain but other times it agitated it. I am going in every three months and having the billery and pancreas stints replaced. Originally what happened was I went in on an emergency with extreme pain to find out there was sludge overflowed in my stomach everywhere that caused an big infection. When they went in the first time to put a stint the in they accidentally tampered with the pancreas and had to put a stint in there too. It seems about the starting of 2 months after stints are in I am in awefull pain and they keep saying there is air in the billery duct that’s causing it .I have been told I now have to go in every 3 months for the rest of my life to have the stints replaced. Is this normal. I am not sure how much he longer I can go on like this. The pain itself after recovery takes me 2 weeks to die down its that bad. Has anyone ever experienced this before. I can’t seem to get answers.
Great article. I’ve suffered off and on for over 25 years. Worse symptoms at times now.
Carol,
I am so sorry. I hope things improve for you.
Brooke
I have had 5 ERCP’s to date after having my gallbladder removed 2 years ago. I have had relief with the plastic stent placements until they are either pulled or fall out. Each report post procedure mentions “sludge” and “debris” observed. Would that mean the liver may not be working properly? I am stent-less right now and have to eat very bland foods to avoid the usual pain/nausea/discomfort we all seem to experience. My doc is well respected, Dr. Martin Freeman at the Univ of MN. I see him this coming Monday, and he says the only options left for me are a metal stent placement or the transduodenal surgery some of the respondents have had. Would really like some feedback here. Thanks!!
Hi Bret,
Dr. Freeman is great. You sound just like a few women I know. One has nearly been cured by having the biliary roux en y (cholangiojejunostomy). She had the sphincteroplasty and it didn’t help at all. Then when they tried to put stents in they’d fall out because the sphincters were permanently open. I had the plasty and if I could have gotten relief from a stent I would have never gotten surgery. Stents didn’t help me though. Let us know how you make out.
Brooke
I’ve been suffering from this for years. From what I understand, besides it being more common with females, there is a correlation between length of time that gallstone issues go diagnosed. I went over a year with my doctor saying my pain was in my head because all she did was an xray, not an ultrasound. When I finally did research and told her I needed an ultrasound, sure enough they found gall stones. Now I blame her for my SOD. I was rushed in to scheduling an ERCP, but I couldn’t afford it and when I did research found that if the only symptom you had was pain (no enlarged duct, no high liver numbers etc) then there was little chance it would work anyway. So I’ve been living with the pain for years. I don’t feel nauseous, no weight loss.. just constant pain on my right side..around to my back. Similar to the gallstone pain, but not as intense. I can feel the duct contracting during the pain. It’s very frustrating. I was happy to read this and know that I’m not alone.
Mary,
So sorry you have this awful condition. It is frustrating. You are definitely NOT alone!
Take care,
Brooke
Mary, did you ever find something to help? I am dealing with this for 4 years just like your symptoms. It’s wearing me down worrying about it . I am at my end of the rope…one thing after the next.I feel I can’t enjoy anything, scared to go enjoy Horse camping and being away from home is just scary, idk why it’s not like I get help by staying home..but it’s so stressful ..
SOD post cholecystectomy due to gallstones, hypothyroid from thyroidectomy due to nodules/goitre from Hashimoto’s, itching constantly especially hands, arms, legs from who knows what, premature menopause due to low estrogen to top it all off, and extremely sad and tired from fatigue…. I’m just wondering which one of these will kill me first!
Hope you are having better days. Sorry you are going through this.
Thank you for sharing your story. I had gastric bypass surgery 5 years ago and did well until about 2 and a half years ago. Then I started having severe pain after eating and couldn’t keep anything down. Turns out I had an intestinal torsion and needed emergency surgery. Fast forward through 2 more abdominal surgeries for twist in the bowel and a gallbladder removal and still nothing was getting better! My doctors here finally sent me to Indianapolis University over the summer, and just now they finally diagnosed Sphincter of Oddi. They are recommending a transduodenal sphincteroplasty, which I scheduled for March (over spring break). I am wondering how the recovery is for this surgery. Thank you so much for sharing and educating people about this unrecognized, painful and debilitating condition!
Hi Bridget,
Glad to hear you went to IU. I hear they are good for SOD. Feel free to email me at info@sodae.org. That is the best way for us to talk about the sphincteroplasty. I am surprised they are recommending a major surgery like this off the bat. Usually you would have gone through several ERCPs prior to jumping into this. Please email me so I can tell you more.
Brooke
I had gastric bypass 12 years ago then 4 years ago Mr gahlbladder out. I them kept having severe pains a years of tests showed nothing but then saw intussuseption. They did a surgery put in feeding tube. Then liver functions still high. Thet did ercp. I ended up with perforated intestine in hospital a week. Now liver and pancreatic blood tests high i hand nausea and sil ache right side. In so scared what’s wrong. Thet said sod and ercp is more a life style priceesure not life or death
My medical issues began in December of 2001 just after I had my second child. I would get violently ill vomiting and diarrhea and intense pain in my upper right quadrant. I was in and out of the hospital every 4-6 months I was admitted with these symptoms. All that was done was pain control and to control my vomiting. In 2005 I was so ill my first GI did a colonoscopy and diagnosed me with Colitis the dr said I was “lucky” because it was a bacterial colitis and would go away without any further “flares”. I was put on asacol and amitriptyline. That helped for a while then in 2009 I was very sick again with the worst searing stabbing and burning pain up under my right rib cage and it radiated to my back and was admitted to the hospital where I was first diagnosed with pancreatitis. Then abruptly in 2010 my pain stopped. I was “better” until 2013 I started getting pancreatitis over and over and over again. The pain was out of control. In 2011 I developed appendicitis and had to have my appendix removed in an open procedure because it was so infected they were afraid it would burst. I was still having pain after my appendix was removed so the dr thought it was my gallbladder so it was taken in June of 2013. All of July I could not keep anything down at all. By August I was less then 90 pounds. Was in Cedars of Siani in Los Angeles that’s when I got my diagnosis of SOD August 17, 2013 I had stents placed in my pancreatic duct and in my common bile duct as well as a sphincterotomy. Prior to August 17 2014 I was diagnosed with IBS, then that turned into probable IBD I had a positive ANA test and a positive IGG test so after a colonoscopy my GI was thinking it may be in an area of my intestines and instead of doing a pill cam to verify the diagnosis he decided to start treating me as if I had IBD specifically Crohn’s Disease.
Michelle,
I am so sorry you have had to go through so much before getting diagnosed and treated. I hope the sphincterotomy and stents help. Some people who have autoimmune issues elsewhere in their bodies also have autoimmune issues causing their pancreatitis bouts. Have you gotten genetic testing for autoimmune pancreatitis? If not, may be worth getting.
~Brooke
I was diagnosed with SOD 4 years ago. I’ve had 4 sphincterotomies at Mass General and have absolutely no relief. My dr tells me I know longer have SOD since the muscle is now permanently open. So I just have no diagnosis now. Just had an EUS and everything looked good except small tumor on head of pancreas. This new dr who did this last procedure at Beth Isreal told me today that he is stumped. I couldn’t be more depressed to hear this news. Anyone have any thoughts?
Hi Deneene,
I am so sorry you are struggling with SOD symptoms. It is an awful and mysterious condition. Some people just get to the point they continue to have pain even after multiple sphincterotomies. I had the transduodenal sphincteroplasty where my sphincters were sewn permanently open. The surgery provided relief of many of my SOD symptoms, particularly nausea. However, I still experienced some pain in my right side. It was different than the sharp stabbing under the right rib pain. It was as though my liver were swollen or the reflux of duodenal contents irritated my duct. Quite a few women I know had the sphinceroplasty and their SOD pain still did not go away. In my opinion, though the sphincters are sewn open, the muscle area and bile duct still spasms. Some of these women later had a biliary roux en y surgery and experienced complete relief. All of these women had near complete relief with regular biliary stent placement. So, no, just because your sphincter is supposedly wide open, it doesn’t mean you are “cured”. If it is a quality of life issue, you may want to get a surgical consultation at some point. The surgeon highly recommended near you who performs these surgeries is Dr. Mark Callery at Beth Israel. You can find information on him here: http://www.bidmc.org/Centers-and-Departments/Departments/Surgery/General-Surgery/Meet-Our-Team.aspx.
I hope you get some answers and relief.
Hugs!
Brooke Keefer
Brooke,
Thank-you so very much for writing about your battle with SOD. I think I too may be affected by this but, so far I’ve had to fire two gastroenterologists who wouldn’t deal with this possibility. They just gave me cholestyramine for possible bile reflux. I had my gallbladder removed in 2006 because it wasn’t “working”. Ended up on sucralfate to help with diarrhea and intestinal pain afterwards. In 2013, I had an allergic reaction to a colonoscopy prep and think it aggravated my condition. Three weeks later, I couldn’t eat or drink anything without being in agonizing pain. I went from 108 to 86 pounds in 8 months, bedridden for five and thought I wouldn’t pull through. Conventional tests could find nothing but gastritis. Alternative medicine found severe adrenal fatigue, MTHFR defects, Hashimoto’s thyroiditis and celiac. I am addressing those issues, and was fortunate to be able to gain back 15 pounds but, am still struggling with the original symptoms which I think are SOD related. Had a severe episode that woke me out of a sound sleep a few nights ago. ER labs were all normal, at least no pancreatitis showed. Still hard to eat. I am due for an endoscopy in a couple of weeks. I was hoping to find a doctor in the Colorado who knows and treats SOD but, was unable to find any. Do you know of any in this area? Thank-you so much!
Hi Kate, I asked our Facebook support group if anyone recommended an SOD doctor in Colorado. One woman said to contact. Dr Raj Shah at University of CO hospital Aurora campus. I guess you could google search contact info. She said he wad amazing and has performed over 14,000 ERCPs and did her ERCP with manometery and sphincterotomy in April. He follows all best practices (pancreatic stent and NSAID suppository). Good luck and let us know how you make out.
Brooke,
Thank-you so much for asking your Facebook support group about my issue!!! Please thank the woman who recommended Dr. Shah, too! I am very grateful for the information and, it warms my heart to see so many people helping each other! I will contact Dr. Shah and let you know what happens.
Thank-you both again!
Kate
Hi Kate,
I too am from Colorado. Though Denver is about 100 miles from home, I’ve been going to the University to try and find an answer. I have a consult on the 20th with a Dr. Wani about an ERCP. I’ll let you know what I think of him.
I was originally supposed to have it done April 1st, but a Dr. Attwell told me of the risks, and talked me into a EUS instead which showed nothing. On a follow up with Dr. Austin; he was frustrated as he wanted the ERCP to be done to evaluate Sphincter of Oddi. I knew nothing about it. I’ll keep you posted and good luck!
Hi Suzanne,
Sorry for not answering you sooner but, missed your post. I am thinking about getting a referral to UC Denver with Dr. Shah. What did you thin of Dr. Wani and did you get an ERCP? Hope you are feeling better.
Hi Brooke
I have been trying to research this endlessly !!!! problem is ….. l live in Ontario,Canada…. I’ve been diag with possible SOD… been hospitalized many times… but nobody here wants to put it in writing for me even after HIDA scan says yes…. my doctor here knows absoultly nothing about SOD…this has crippled my life…. had to quit my job … an live day to day…l’m at my wits end…all doctors say is go home an manage pain…. PLEASE HELP ME….don’t know how much longer l can live like this….
The sphincter of Oddi, like all sphincters in the gastrointestinal tract, is controlled automatically by the autonomic nervous system. This is an automatic system controlled by the lower part of the brain and I suspect, sight unseen, that it is autonomic dysfunction that is the key. The most important neurotransmitter in the system is acetylcholine. This is dependent upon adequate energy from the “engine” of the cell, the citric acid cycle. I suggest that you look up my paper “Thiamine and magnesium deficiencies: keys to disease” Medical Hypotheses 2015;84: 129-134.
Thank you, Derrick for your comment. I have long suspected the nervous system becomes confused after the gallbladder is removed. I think the body still expects the gallbladder to eject bile and this sends the nerves in a tizzy. It is interesting you mention acetylcholine as I do not tolerate noncholinergics–I get wacky nervous system side effects. Also, a recent organic acid test showed I am low in thiamine. I read the abstract for your article. Fascinating.
Thankyou so much for sharing your story. It is comforting to know it is NOT just in my head! I developed these symptoms shortly after my gallbladder removal in 2006. I will now go back and ask for these blood tests to me done. Im sure my doctor will roll his eyes, but this makes perfect sense!
Thankyou again.
Karen
I am sorry you are having these issues too. If your doctor rolls his eyes, it may be time to get a consult with a new doctor. The Sphincter of Oddi Dysfunction website, http://www.sodae.org, has a list of SOD doctors–those open-minded to the condition who will diagnose and treat.
Thank you for sharing your story. My daughter who is 16 years old has suffered all of her life with this condition. She had her Gallbladder removed when she was 9 years old and then only got worse after that. She has such a miserable life in pain almost everyday. She has an ERCP with stent replacement and sphincterotomy every 6-8 weeks. She rarely has abnormal labwork but her pancreas does show evidence of chronic pancreatitis. Her case is being considered for surgery. They are talking about doing a sphinteroplasty or a billiary bypass. I don’t know what to do anymore. It’s a desperate feeling seeing her in pain and there is nothing I can do or give her to make it better. I am now currently trying to get an appointment with the mayo clinic to get a 2nd opinion on the surgery and her diagnosis. Just being a mom I guess. She will always be my baby girl.
Thank you for your article about SOD. My daughter has it. We had been fighting for years trying to find out what was wrong with her. She also has gastroparesis (paralysis of the stomach). Alice Hale suffers from lots of other health issues which started when she was two and she went into a coma and came out with epilepsy. Two weeks ago, she was diagnosed with fibromyalgia. She’s 29-years-old. School was difficult for her because the school wouldn’t let her attend due to her seizures.
I’m usually pretty articulate. That seems to have flown out the door. I just wanted to thank the writer for this article.
We have started a Facebook group for SOD. https://www.facebook.com/groups/SODSupport/859335584086737/?notif_t=group_activity
Good luck with that horrible curse (SOD). Thanks for the story.