2,142 responses to “That dang sphincter of Oddi again”

1. FOR MANY YEARS DARVACET WORKED FOR MY SPHINCTER OF ODDI DYSFUNCTION, THEN THEY TOOK IT AWAY IN NOVEMBER OF 2010. I WAS CRUSHED MY SOD PAIN CAME BACK WITH A VENGENCE AND THEN SHORTLY AFTER THAT THE LARGE AMOUNTS OF RAW BILE STARTED POURING INTO MY GUT AGAIN. I HAD TO DO SOMETHING I CAN’T LIVE LIKE THIS SO I STARTED RESEARCHING AND CALLING GASTRO DOCTORS AGAIN. MORE MONEY, MORE TEST AND FOR WHAT THEY GOT NOTHING FOR US. SO WHAT I DID IN THE MOURNING WHEN THE PRESURE PAIN WOULD START I TAKE ONE 500MG EXTRA STRENGTH EASY TAB OF ACETAMINOPHEN WITH CRACKERS AND A PROTON PUMP INHIBITOR. THEN IN TWO HOURS I TAKE ONE MORE 500MG EASY TAB OF ACTAMINOPHEN WITH SOME MORE CRACKERS AND THEN AGAIN ONE MORE ACETAMINOPHEN IN THE AFTERNOON.AND THEN AT FIVE I TAKE 7.5 MG OF VICODIN WITH ANOTHER500MG OF ACETAMINOPHEN. AND FOR A MONTH NOW I AM CONTROLING MY PAIN AS LONG AS I STAY AWAY FROM FATTY FOODS ,SPICES,CITRICS, AND FAST FOODS. EAT LITE AND TRY NOT TO EAT TO MUCH DURING THE DAYTIME. LOW FAT MILK HELPS AT NIGHT. GOOD LUCK I KNOW WHAT YOUR GOING THROUGH I HAVE BEEN LIVING WITH THIN HIDEOUS DISEASE FOR OVER TWENTY YEARS IF YOU HAVE ANY MORE QUESTIONS PLEASE ASK. PLEASE EXCUSE MY TYPING AND SPELLING I’M TRYING FROM BOB

   • AND WHEN TRYING ANY NEW PLANS OR MEDICATIONS YOU SHOULD ALLWAYS CONSULT YOUR DOCTOR FIRST.

     • I too have struggled with this condition, I spent all of last year being sick every time I ate, followed by crippling abdominal pains, I had pretty much every test going, it wasn’t until I was admitted to hospital with serious dehydration that I met A professor who listened to me, he told me to give him an hour and he would return, when he did he gave me the diagnosis of SOD my records showed my bloods fluctuated between being normal and elevated, my bile duct was also enlarged. unfortunately my consultant still didn’t believe I had this condition I still think he thought I was some kind of anorexic as I hadn’t been able to eat anything in 11 months and had lost 6 stone, luckily I liked my food before being ill so had some weight to lose!!! It took another 3 months and my husband continually phoning up before I was finally referred to a specialist in London, In November 2011 I had an ERCP with sphincterotmy they told me the muscle was tight shut, I did contract pancreatitus but because they had put a stent in didn’t get the bad type I was in hospital 5 days, Unfortunately for me I can’t say I’m completely cured, the pain has started to return but not as bad as before, I’ m able to eat soups now which is a big bonus and step up from eating nothing!!.My surgeon has told me that sometimes the muscle heals back together, which is what I think is happening with me, I’m not quite sure what the next step will be??? I live in England and can say hardly any doctor knows about this condition,Ive had to explain it to my GP! The professor who diagnosed me told me he only knew about it as he had just returned from a trip to America where it was being studied!! I have heard diets can help reduce symptoms and would be grateful if anyone could suggest anything??
       I’m currently setting up a web site in the UK for sufferers to gather as I feel this condition is so unwidely known that sufferers are left feeling very alone and a lot of times mental as most medical professionals don’t believe it exists.
       Sorry for the long message but this is the first site I have found and it has got me excited!!!

       • Hi victoria,
         My wife has been suffering with SOD for three years, we live near sheffield, south yorkshire, the problems we have faced are that its a rare condition in the uk, however we have found our own way of controlling the attacks thru the use of buscopan injections. It would be good to speak to other sufferers in the UK

       • Hi Simon,
         Ive not heard about buscopan injections??, my doc prescribed the tablets but they had no effect on me unfortunately, has you wife had any ercps etc??
         It seems treatments vary up and down the country!! I have to say University College Hosp in London have been fantastic, they have told me they’l see me 3 to 4 times a year from now on, but have said if condition starts to get worse again to ring them and they will arrange an urgent appointment, which is prob going to be my next move.
         The more I find out about this condition the more I realise it seems like a life long thing that you never get cured from just learn different methods of coping with it 😦
         As soon as the website is up and running I will let you know, think it is important for sufferers and their families to try and help each other, sometimes just to hear someone is in the same boat as you, gives a lot of comfort.
         All the best
         Victoria 🙂

       • HI Victoria,
         We stumbled across the injections by chance, my wife has to have 20mg in 1ml type, it is usually used for renal cholic, but as it works by stopping smooth muscles from spasming it works really well, Given Intramuscular it takes 20 – 30 minutes to have effect, Given I.V it takes about 10 minutes.
         I had to fight hard with my GP to be trained how to give IM injections, i even considered re-training as a nurse purely so i could look after my wife. Since I have been able to give the injections it’s given us alot more freedom. My wife’s family live in swansea and from sheffield it was a four hour drive we both dreaded, twice we ended up diverting to A&E’s so that she could be treated, not fun with 3 kids. Since I have been able to do the injections, i just pull over, give her an injection and carry on.

         As for ERCP’s she hasnt had one, as the consultant in sheffield didnt watn to risk anything, but we have had every other test going. The specialist has ruled out sphincterectomy as we dont want the risk of anything going wrong. So as you say it is looking like a life long condition. We have found our own way in managing it as for a long while GP’s and A&E wouldnt acknowledge the problem and my wife was classed as being a time waster. But finally we have a diagnosis and treatment life can continue.
         I have researched the condition from the outset, and have been told by some dr’s im more knowledgeable than them, if there is anything you want to ask feel free.Below is a list of thing we tried to help the condition, they work for some people but not my wife.
         Amlodopine (calcium channel blcoker)
         Buscopan Tablets (regular and as and when)
         GTN Spray

         It would be great to hear from you when you get the site up and running, if it helps I am an I.T engineer too so look after alot of my companies websites. and work with a great web developer.

         Simon

       • I’ve had this condition for over six years now ever since I contracted Glandular Fever. It was only diagnosed 18 months ago by a fantastic pancreatic specialist at Southampton General Hospital. She’s been treating my with botox injections via endoscopy every 3-4 months and I’ve been pain free until the Botox starts to wear off. I must admit that the doctors at Southampton really seem to know a lot about this and have a case load of patients who have the same problem.

         Because it works so well, I was recommended for a sphincterectomy ERCP, which I was supposed to have today. Unfortunately the doctor doing the procedure said that I needed it done under general anaesthetic, which they couldn’t do today. He also recommended seeing a specialist in London who instead of cutting both of the muscles (of the bile duct and pancreatic duct), does a pressure test using ERCP and identifies the abnormal muscle and only cuts that one. This should reduce the risk of pancreatitis. Does anyone know who this specialist may be or which hospital they are based at?

       • hi just read your post ,i had my gall bladder removed a month ago and ever since have had right sided pain and into my back,its not like a gall bladder atack its different its a different place i know its early days ,i am still having to be very careful what i eat ,seeing the consultant in 2 weeks ,for years i have ahd elevated liver tests i was hoping the removal would help,i would be glad of any help lynne byrne worcestershire england

       • Victoria,

         I read your post with interest. I have chronic type 3 sod and live in the UK. In January this year a few of us set up a Facebook group. We are just about to publish a website which we have been working on.
         If you read this please get in touch.
         richard@ten2two.org

       • I too have SOD type lll and found from blogging for the past 2 years a drug “allowed” in europe called Buscopan!!! Check it out!! it works better than anything I’ve found because it is a specific muscle relaxer FOR sphincters!!!! Good Luck!!!

       • Hi Victoria, I have the same problem I live in Norfolk, I’ve now been off work of a year, I’ve had many tests I’ve just been referred to London for a sphincter of oddi manometery. My GP has been very good but admits she knows very little about it. I just hope I soon get an appointment, how long did you have to wait?

         It would be good to speak to others suffering the same problems.

       • Hi Tina,
         I only waited 4 weeks to get appointment so wasn’t too bad, was I got there they were Brill I had first ERCP done 4 weeks after that appointment!, fingers crossed for you, they have been excellent with me and other sufferers I know.
         Keep on touch xx

       • I have much of the same history as you. I refused an ERCP because of the possibility of pancreatitis. I chose to go diet as an alternative. Since the bile from the gallbladder, pancreas and liver all work in the digestive system. Fat is a huge red flag. So I chose Dr. Caldwell Esselstyn’s Heart and Disease Prevention & Reversal Diet. It took a year but I rarely have reminders from my upper right quadrant. Have you never been told to completely change your diet?

       • Hi I live in Barnsley south Yorkshire, I am currently under two very good doctors one at Barnsley hospital called Dr kapur (gastro Dr) and Mr Mohammed Karachi (hepatology) at Sheffield Hallamshire hospital they work together and are both very experienced in sphincter of oddi dysfunction. I have been suffering for years with severe pain and not being able to eat properly (after seeing loads of different doctors) I finally got reffered to these guys (thank god) Dr kapur knew immediately from speaking to me that I had sphincter of oddi dysfunction. I have been in the hospital and ad botox injections in 4 areas of my ampuilla and I’m feeling a lot better (botox relaxes the muscle and works if its in the exact spot) but works for a short period and I’m now waiting for a sphincterotomy. This pain as been seriously affecting my life I’ve been living on tramadol and oral morphine so grateful for these guys. You can see any Dr at any hospital under the nhs its your choice,

   • CORRECTION TO THE BLOG ABOVE I AM NO LONGER TAKING VICIDINE FOR MY SPHINCTER OF ODDI DYSFUNTION I AM USING LORTAB 7.5MG/500MG I BREAK THE LORTAB IN HALF AND TAKE THEM AS NEEDED FOR PAIN AND THERE EASIER ON MY STOMAC.

   • FOR THE BLOG ABOVE , I NO LONGER USE VICODINE FOR PAIN FROM SOD. IT WAS TO HARD ON MY STOMACK. I REPLACED IT WITH LORTAB 7.5/500MG TABS I BREAK THEM IN HALF AND I TAKE THEM AS NEEDED FOR MY SPHINCTER OF ODDI DYSFUNTION PAIN.

     • Bob,
       Lortab is still tylenol and hydrocodone which is vicodin. I don’t know how your getting away with not having an attack. I am wondering if you don’t have another condition going on.

   • Bob, your account is rather horrible. Surely you can find a GI to address this surgically. The ERCP Judy mentioned might help in both diagnosis and therapy. Where do you live – the backwoods of Alaska or something? I live in a small town in Northern California but there are numerous GIs and surgeons. I had my gall bladder removed on Oct 23 laparoscopally and everything was skippity-boo, the by Friday night I was in such agony my husband took me to the ER and the next day I had a ERCP. Now I have a stent in the opening where the common bile duct Myers the duodenum. I still have no idea what went wrong but bile was pouring into my peritoneal cavity. It was hell.

   • Hi,
     I have had sphincter of oddi dysfunction since March of 2000 when I had my gallbladder removed, The pain I experienced started within days of having the cholecystectomy done laproscopically. I spent 3 days a week in the ER for almost a year. Back then there weren’t many doctors who new what sphincter of oddi was. I have been to many doctors since 2000 and still suffer with the severe spasms and pain caused by this condition. It was so bad I would crawl on the floor not being able to sit or stand. Now, after also having two major back surgeries, crawling on the floor or even sitting on the floor is no longer an option since I can’t even bend. Try having an attack and you can’t even bend. Doesn’t work out very well.
     Anyway, what I want to tell you that if you are taking vicodin and not having an attack you do not have sphincter of oddi dysfunction. I have read a few blogs where people say they have taken morphine or vicodin or percocet and experience relief. If this is the case….it is not sphincter of oddi. Narcotic pain relievers work by causing small spasms in the body thereby reducing pain. If you have sphincter of oddi dysfunction and take a narcotic such as vidcodin, within minutes you will start to have pain which will turn into a full blown attack Morphine is used in the test for sphincter of oddi to cause the attack. The medicine of choice are now and have been aciphex, bentyl and levsin. Aciphex stops acid more quickly then any other reflux medicine. Bentyl is an antispasmodic and levsin also reduces spasms. They don’t always work but for many people that I know it has certainly helped them continue to function. There was another medication NuLev which is the same as levsin but worked much faster but it hasn’t been available for many years. People with IBS and us sphincter of oddi people were pretty upset when they stopped making it because it would kind of explode in your mouth and worked more quickly then anything else.You can also take toradol for pain and it works but you can only have it for 3 days as its not good for your heart.
     I can only hope that one day a someone will come up with a pain med for those of us suffering from this condition. I have been through 3 major surgeries with no pain medication because they would have caused attacks. I suffer every day with back pain and headaches and have no outlet to any medication that would work as they all cause sphincter of oddi attacks. If anyone out there has any other answers please keep things going and let us now.
     I pray we all feel better some day.

     Ava

     • Dear Ava, I believe I have Sphincter of Oddi dysfunction. The attacks you describe are like mine. I am crawling, rocking, moaning on the floor and I often hyperventilate until I pass out briefly. They are excruciating and my husband has called an ambulance 3 times when I’ve had particularly bad attacks. What I want to say is I CANNOT take codeine since I had my gallbladder out and these attacks started. Anything with codeine brings on an extreme attack, much like the attacks I had before I had the cholecystectomy. However, I seem to have no problem with morphine or Percocet. I was extremely worried the first time they gave me morphine, and I was assured it was not the same as codeine. I still am quite sure it is the SOD.

       • Hi Kendra,
         I feel really bad for you as I know this pain and it is horrific. The only thing is that when they do the test for sphincter of oddi dysfunction, they use morphine to set off an attack. The morphine like all opiates or narcotics works by causing small spasms and morphine seems to be the worst. It causes spasms and sets off a sphincter of oddi attack. There is a possibility that when you had your gallbladder out that they blocked one of your bile ducts. I actually had a friend that this happened to and her attacks were pretty much the same as mine but she could tolerate some of the pain meds. She finally went to a different hospital and had tests done and it was her bile duct being blocked. Another issue you may be having is different foods. A lot of us can’t handle fatty foods….this is really common after gall bladder surgery and with sphincter of odd.Then, there are the odd people like me…..I can’t tolerate sugar or anything course like pears, apples, carrots or most things with a course texture.
         I am really interested in your case and what it could be. I feel there is no hope for me after all these years and I’ve met people like me who worry what will happen to us if we need chemo or something…..can’ we handle it…..I don’t think I can. I’ve had 2 major back surgeries and suffer every day and cannot have any pain meds. I am feeling hopeful for you. If you can have morphine there is no way it’s sphincter of oddi…..just can’t be. They had to have missed something. Can you find out if they gave you morphine or dilaudid. Dilaudid is hydromorphone but it’s make up is different from morphine and you could have gotten away with taking that possibility. I also know from much experience that if a doctor gave you morphine after telling him you have sphincter of oddi, he truly doesn’t understand what it is. Please write me back with more information on your attacks how they start. Do they start after you eat something…..do you feel like someone is wringing a towel out in your abdomen. Are you taking any meds for the attacks such as aciphex, bentyl or levsin. Please let me know so I can try and help you.
         Ava

       • Ava, there are a LOT of doctors who don’t understand what SOD is, or even acknowledge it. I think because it isn’t fully understood by the medical community at all yet. And there are lots who can tolerate some drugs but not others. Perhaps that is why they have to give me such high doses of morphine to stop the pain…I was injected every five minutes just to keep it under control. That said, I am finally being sent to a gastroenterologist and we will see what happens from there. As for future illnesses where I may require pain management. I have worried about this as well, but I do a lot of research about natural drugs vs. pharmaceutical drugs and I have found things that help me tremendously right now! Also I would never have chemo in a million years.
         I will update here with what I manage to find out down the road!

       • Hi Kendra, My situation is the same. I had a cholecystectomy in 1979. Apart from one ‘attack’ in the week following surgery (was probably a bit of debris left behind in the bile duct), all was well until in 1990 I experienced a horrible attack of pain exactly like the pain I suffered when I had gall stones. That morning I had a bad headache and the only pain meds in the house were my daughter’s codeine tablets. I took two and about an hour it all kicked off! I ended going to A & E by ambulance. A nurse did mention something at the time about the correlation between cholecystectomy and the pain I was experiencing but didn’t elaborate. The attack lasted about 3 hours. I then slept and was later discharged. A year later I took a headache pill that had a small amount of codeine in it. The result was the same pain although this lasted only about an hour. After that I avoided codeine. My GP insisted it was just bad reflux??? Two years ago I took a couple of ibuprofen for a headache whilst visiting my sister. An hour later the old familiar pain started to build up. Luckily it lasted only about 20 minutes at full blast. I later discovered that the ibuprofen included codeine. Recently i have been in and out of hospital for several operations. I have had IV morphine with no apparent problems. Two weeks ago in hospital to assist with the pain of a dressing change I was given oral morphine. Within the hour I was in agony. It lasted about two hours and was dreadful. I also end up hyperventilating during an attack as I can only breathe in short small gasps. I usually end up vomiting several times during an attack. Vomiting sometimes relieves the spasm for a couple of minutes. The staff and doctors didn’t look like they took me seriously when I told them what I suspected was happening. The doctors had never heard of S.O.D. brought on by codeine or morphine. I just wish I could get t his formally down on my medical records so that it could (if it ever happens again) be treated properly. I have heard that pethidine given i.v. is a good choice?

     • Ava,
       Today I visited a pain management doctor because over the past few years I have been having “strange reactions” to IV and some over the counter pain medications and I need to be able to take pain meds for problems and also I had a spine condition will require a MAJOR surgery within a year. I had my gallbladder removed in about 2007 and after that started getting these horrible chest pains and spasm in my ribs that would make me feel like I couldn’t breath they were so intense sometimes. I thought they were because my back is so bad. They have become more frequent as the years progressed. They as I started having to visit the ER more frequently for health issues I have realized that when I take Morphine or Diluadid I will have the most extreme pain I have ever experienced (and that is saying a lot). It makes me feel like my rib are spasms so bad my ribs will twist all up. It is the first time I have ever said my pain was a 10 in my life.
       The doctor I say today said I need to visit a GI doc to have ERCP done to see I have sphincter of oddi dysfunction b/c that is what it sounds like to him. I noticed in your post you mentioned that Morphine is a good indicator as a reaction. I could not find that online anywhere. Is there a place you found that information? Do you know if you have the condition corrected if you can once again take the pain medication?
       You can email me at blsdmomto3a@hotmail.com. Thanks again in advance for your help. I pray you find the help you are looking for!
       Blessings,
       Leah
       P.S. So far I am able to tolerate a low dose of Lortab without the side effects and the doctor gave me a nose spray (can’t remember the name right now it’s at the pharmacy being filled – he said if this works with little to no side effects I can tell the anesthesiologists that I can use a whole different “family” of medication to try – he said the ones they use to use mostly in the 60’s and 70’s that they don’t really use much anymore).

     • i have a constant spasm that never goes away and the only relief i get is from duragesic patches abd vicodin,lol. weird huh.

   • Hya,could you help me clear up a problem im having with a consultant i have recently seen.Can you still have/get S.O.D pain and attacks even after an ERCP and Sphinontomy?Dr ses i cant have got S.O.D now as ive ad the treatment above(with stent),yet the pain is the same and to some degree there all the time.Also he said i havn’t got re-accuring Pancreatitus as my Pancreas isnt damaged.Yet,ive been hospitalised many times and this is the cause stated on my discharge sheet.He as been the only Dr to have made me feel a liar and a hypocondriac.Others have all said ive got S.O.D and the Pancreatitus.
     Really Hope you can help and resolve this issue,
     Yours,Diane Dingwall.

   • Since 2007 after removal of galblader, I have these attacks oddi, my cure when an attack is coming, which is sudden, I force down a glass of whole milk and within 5 minutes the pain goes away. Don’t throw up the milk even though you want to, go lay down and moan and WILL it will go away.

   • I had my gallbladder removed 6 years ago. Had my first attack day after the surgery. When I get an attack (believe it or not) I immediately drink a glass of whole milk and hold on for dear life. I timed the last attack and it took 7 minutes for the pain to go away. DO NOT THROW UP the milk, even if you feel like it. Get by yourself moan and grown all you want while you wait for the milk to do it’s job because it will. I get an attack maybe once a year just suddenly and each time I don’t think I’m going to make it (like call for help). My pain starts it feels above my stomach and in my back with severity. When the milk starts working the pain starts subsiding until its gone, 7 minutes. The fat in the milk seems to relax the sphincter muscle. My second attack I had, about 5 years ago, I was at work when it started coming on and a voice spoke to me to go and get a small carton of milk and start drinking it. IT’S WORKED EVERY TIME.

2. Dr. David Carr-Locke – Chief of Division Digestion Diseases and Director of Endoscopy Institute at Beth Israel Hospital in NYC (Manhattan) (212) 420-4015 That´s who you want to see.
   is one of the leading doctors in the world (among the 2 best in the US) who performs a ERCP. He´s been doing it for 30 years. I´m in a similar non-similar situation. In my case, he´s done everything he could to keep me from having an ERCP (which is very surprising considering that´s the way he makes money). I got a EUS (endoscopic ultra sound) and he interrupted the procedure because he wanted more non invasive treatments first. I´ve tried medication, etc etc but haven´t gotten better so I will have to go ahead with the ERCP, that he will perform, obviously. The high percentage of possible complications and possible very nasty weeks or months stay in hospital complications makes me very uncomfortable and hesitant but, that´s why I´m doing it with him: trying to bring that percentage more, as much as possible.
   Good luck.

   • Wow – I’m glad I didn’t know about “the high percentage of possible complication” before they announce that that’s what they were going to do and wheeled me off. I was quite ready to die rather than endure that pain another minute.

3. I JUST FOUND A NEW SITE CALLED ~ SPHINTER OF ODDI DYSFUNCTION A REAL TRUE STORY.. I WILL MEET YOU THERE AND WE CAN TALK MORE ABOUT THIS DISEASE AND WHAT NEEDS TO BE DONE.

4. I AM STILL CONTROLLING MY SOD PAIN NOW FOR FOUR MONTHS . I HAVE MANAGED TO DO WHAT ALL OF THE DOCTORS IN THE WORLD COULDN,T I S ANYONE INTERESTED READ MY COMMENT ABOVE OR LEAVE A COMMENT.

   • What is your method of controlling it?

   • My attacks come suddenly. I grab a glass of whole milk and gulp it down. Don’t throw it up even though you want to, and go lay down. Within 5 minutes pain goes away. Breath slowly if you can and moan for those 5 minutes.

5. I have been pretty much pain free for 3 years now. Now and then a little problem, but nothing like I dealt with for years. They fileted the whole muscle around biliary duct. It took two procedures, but I believe they got it this last time. I went to a doctor at the University of Michigan in Ann Arbor. If anyone would like his name, I can look it up for you….. He was great.

   • Hi I would like more information on your procedure. My name is Shalon. I’m from Michigan.

     • What information would you like? Let me know, I will try to help out…..

   • Please give me the name of the doctor at U of M.

     • The doctors name at the University of Michigan in Ann Arbor Michigan is
       Badih Joseph Elmunzer Phone number for appointments is 1-800-211-8181.
       He is the one that helped me…

   • Can i get info please

6. WHEN TRYING ANY NEW PLANS OR MEDICATIONS YOU SHOULD ALLWAYS CONSULT YOUR DOCTOR FIRST,

7. I AM STILL CONTROLLING MY SOD PAINE FOR GOING ON SIX MONTHS. I KNOW THAT THEY HAVE THREE LEVELS OF SOD BUT IF THEY HAD TEN MY LEVEL WOULD HAVE BEEN TWEENTY . I WAS BELGING RAW BILE EVERY DAY IN THE END UNTILL I FIGURED OUT A SYSTEM. NOW IF I EAT ALOT OF BAD STUFF I GET A MILD STOMACH ACHE AND THATS WHEN I HAVE TO SLOW DOWN .

   • Hya Bob,my name Diane n im from Rotherham,s yorkshire.Ive been havin various biopsies n tests done for around 4yrs now.I unexplainably put on loads of weight at 1st now ive lost 5stone wthout even tryin.Ive had my sphincture cut n a metal stent put in by a surgeon in Manchester Royal but only gotjust over amonth free from pain.Im now waitin for a surgeon from Northern General in sheffield to refer me as an inpatient to av more tests done.Im white,weak n in undescribable pain that it totally fills my brain.I take over 30 tablets a day including buscopan,other antispasmadics,tramadol,morphine,paracetamol,pancreatic enzyme,n now pain patches plus thianine n b vitamins n loads more.I take Omeprazole for my sickness which is like something out of the exorcist film x Im totally lost,scared,feel alone cause everything seems like im a guinea pig in this.Im known by my 1st name in hospital im there that much last time 4 nearly a month.I hadmy gallbladder removed 13yrs ago which i was told was rotten n full of large stones.Bed is my onlycomfort as im in pain sitting up.I have to lay on my left side wth my legs up.Sorry gone on so much but im seriously at the end of my tether n just appreciate telling sum1 who understands my painx Thankyou.Any ideas are welcome,Diane

     • Diane this heartbreaking to read! I wish I could do something for you. What is your primary diagnosis -I will look in the medical literature

       • At first Marti after havin 2 liver biopsies,i was told i had a fatty liver.My Gastrologist at Rotherham General,told me it would be very difficult to loose weight with my condition but didnt go in2 details.After loads of other tests ifinally ad a mrcp that showed inflamed n enlarged common bile duct.I thenhad the duct cut all along n the stent putin in Manchester by Dr Makin.Since it hasnt worked 4me i saw a surgeon at Shef Northern hozy.This surgeon as referred me 2 a surgeon specialisin inS.O.D at Hallamshire,think hes called Mr Karaijh.A nurse is coming 2 myhouse on Thursday 2 take blood cos calcium is wrong n i didnt catch the other problem.Im now on double strength Morphine patches as well as all the rest and oral morphine.Nothing seems 2 help long term though.Iv also ad nitrates in my urine.Im hopin it wont be 2 long now 2 b admitted 2 hozy as when my husband spoke 2 the secretary she ad a word with Karaijh n phoned us back 2 say hes goin threw my files now.Something as got 2 be done as im nearly bed bound now.Even pasta,n bread n anything with fruit flavours r the worse 4me.Really at my end now cnt explain ow lonely a pain can be n what do i do if things dnt work at hozy.Xmas is sorted just incase ne way x
         I was born in Monk Bretton,Barnsley,small world Simon.

       • Hello
         First of all, I am so sorry to read of everyone’s true suffering and lack of help from the medical community! I too have SOD, but Type III, which is so much less severe than so many here suffer with. It’s been a very long journey and I’m still off work and struggling many days, but here are a few things that have helped me with my upper right quadrant pain, pressure, and “potty problems”. Mine came after gallbladder removal in March 2012.
         1) I cut out all dairy and soy and even almond based products–rice milk in both vanilla and chocolate flavors work well for me. I have also found an olive oil type spread that tastes like butter that works great on toast.
         2) I have gone gluten free as much as possible and find wheat to be the worst culprit. There is rice and brown rice bread out there that is tasty and gluten free. I eat cream of rice cereal, rice cakes, corn flakes, anything that is rice or corn or white flour based works for me. I read every label and am shocked at how much WHEAT is in everything -at least in the USA-it’s crazy! I shop mainly at Trader Joes, Whole Foods, Henrys, Mothers-the natural food stores. I’ve found “safe” waffles, pancakes, pastas, crackers, chips etc by trial and error. Some are like cardboard and nasty so it may take a while to find what you like but sticking with rice, corn, white flour based products are the key for me. Even white breads have wheat so check the label!
         3) I don’t eat any heavier meats–when I stick to skinless chicken, white meat turkey, and seafood I do pretty well. Beef, pork, or any processed meats like pepperoni are killers. I cannot have too much spice yet but sneak it here and there.
         4) I stay away from whole kernels of corn-for some reason those flare up my pain.
         5) I take Probiotics and Digestive Enzymes everyday.
         6) When I do have a flare up of pain it seems gas is part of my problem, so I take a GasX tablet or two and /or Lactaid to settle things down.
         7) I find that antispasmotics leave me totally constipated and depressed. I went 16 days without a BM after taking an antispasmotic 3 times daily as prescribed by my (former!) gastro doc. They can also be addicting and create many side effects. When I really need it, I take 1/2 of a Vicodin and use my heating pad.
         8) I find walking/stretching everyday helps or when I have a bad flare. I don’t feel like doing anything when I have one, but if i force myself to walk the dog I typically get some relief. I initially lost 30 lbs and was so weak and depressed but the walking has given me some strength and tone.
         9) One life saver for me -especially in the beginning of my mess, when I had a ton of diarrhea, is a product called Heathers OrganicTummy Fiber. It is a white, tasteless, odorless powder fiber made from Acacia Senegal that I stir into drinks or water or into any hot soup or whatever you’d like. It is organic and NOT a laxative. I ingest about 24 gms per day and it keeps me much more regular. It helps with both constipation and diarrhea. It is inexpensive and very soothing to me. I highly recommend all of their products–I have the Peppermint soft gels, the Fennel Seed Tea and the Tummy Fiber. You can find info here: HELPforIBS.com. It is used mainly for IBS symptoms and although I have NOT been diagnosed with IBS, I find that if I follow an IBS type diet, I am much better off. The site has several good books that gave me great tidbits too. When I first became ill I was literally living on water and Saltine crackers for about 10 weeks so I’ve come a long way by reading and doing my own internet research.
         10) I never had any pain or issues with constipation or diarrhea before my gallbladder ‘died’ on me–since then I have had so much pain, lost 30lbs, had to leave my job, my income went down by about 65%, found life hard to cope with. I am a single Mom to two sons but am basically on my own, so I started seeing a counselor every week about 5 months ago. It has really helped me stay focused on my health, be more assertive with doctors, re-focus my life now that I have to “start over” etc. I really recommend it along with medical care. Stress does not cause our issue but I know it does not help either! The depression that comes along with losing control of your body/what you eat/when you eat/where you eat, changes in careers and even relationships is overwhelming.The financial stress of having to go on State disability, burdening family at times by asking for help, not being able to do things with the kids or friends due to illness ,etc all takes it’s toll. Talking to a neutral party has really helped me. Two of my former gastro docs wanted to “pat me on the head” and chalk my issues up to psychological junk -I told them both what I thought of that (and their condescension) and got a new gastro doc!! Sure, my pain and inability to eat or function was upsetting me, but the pain came first, not the other way around. But I do feel it IS very important to address both the physical and emotional pieces of life.
         11) I find I can tolerate wine and other liquors but not beer! I only partake a few times a month but nice to know I can enjoy a glass of wine with friends now and then.
         12) Fat is not our friend, so I double check every label and think long and hard before I put any fat in my mouth as I know I’ll suffer later if I eat too much. I have learned to take small bites and chew my food like I have no teeth! It’s annoying, but I find I can “sneak” and eat a few foods off of my “safe” list if I eat tiny bites, drink tons of water, be sure to take my supplements, take my fiber and not over do it too much.
         I’ve gone from eating rows of double stuff Oreos in my ‘former life’ with no problems, to taking one bite and ending up in total pain and having potty issues for days, and now I can once again eat one cookie if I am very careful with it, and silly as it is, it is a ‘victory” to me!! 🙂 I can also have small portions of Rice Krispy treats and for my sweet tooth I can also have Corn Pops, Honeycomb cereal, Rice Chex etc, I tolerate green tea (hot and cold) fennel tea, peppermint tea, light roast coffee with dairy free creamer well.
         13) I am happy to be back to my college weight ( I am 49 yrs old now) and I am eating much healthier for sure, but having to limit myself so much has been an adjustment for me. It’s all felt “forced upon me” and life as I knew it “taken from me”.
         Once I “accepted” that I have this SOD thing, and it wasn’t going to be ‘cured’ or go away quickly on it’s own, I began to take more control of my life again. I was very angry about it and fighting it all the way. I was expecting an answer and a ‘fix’ when it all began. Although I hate it, accepting that it is just something I have to live with has changed my perspective and how I respond to it. Just like I deal with migraines- and have since I was a kid- I know what to do and what not to do to manage them, so now I am learning to do the same with my SOD. I am still hopeful the medical community will pay more attention to it/us and come up with a med that keeps that sphincter in a proper state, but until then, many blessings and best of luck to all!

       • 4got to say earlier,b4 dropping to sleep as usual,that ive been in hospital plenty of times wth reacurring accute pancreatitus,as it says on my discharge note.Then main diagnosis is S.O.D.My blood pressure drops so low the nurses really panic.Ive fainted a few times when having 2 walk even short distances now and wen stood up 2 long,10mins.The pain is within seconds of eatin and this does put me off food,i did av the tube up my nose into tummy 4 liquid diet then drs decided against it.I get swollen tummy as if sumats gona explode out of me,runs,sickness,incredably weak,white and goose bumps all time.I feel out ofbreath like ive a belt 2 tight round my ribs.The stabbin pain goes in2 base of back n upper.Having blood tests is gettin really bad now,been told nearly all are just superficious?I had a scanner find 2 veins incase need a pic line.If a vein is found the blood just stops running.Im so weak all the time n so loosin my grrrr 2 battle this cos no1 seems 2 no what 2 do.

     • Hi Diane,
       My wife suffers with SOD, caused by having her Gall Bladder removed 3 1/2 Years ago, we Live in Barnsley so it’s nice to find someone close by that can associate with the problems Louise has. We have been under two consultants Mr Kappor @ Barnsley, he was the chap who diagnosed the condition, and then Mr Khan @ the Hallamshire, this guy was great he managed to give louise some life back, Through research and begging with Nurses and doctors I had found that IM or IV buscopan injections would work for louise, so long as she got one withing 15 Minutes of the pain starting, Our GP wouldnt allow us to have the buscopan @ home let alone me do the IM injections, anyway Mr Khan agreed and for the most part we can control the attacks now at home without having to go to A&E. Fingers crossed you get somewhere with the Northern General, Louise usuallly ends up there if she has been to “Meadowhell” something about that place sets it off.

       • Hya Simon,1st thing i hope your wife is finding some relief at last.Im so confused.When the ERCP and sphinoctomy have been done does that mean i now dnt av S.O.D?I saw Dr Karahji at Hallamshire last wk.He said its v unlikely ive got it cos of the sphinoctomy etc ive ad done.I found him useless.The bay n ward i was on was disgusting even excreament on the toilet door n blood on the seat(both still there thursday when i made sure i left).My pain is ridiculous.Im all muddled up help sum1 plz x Is it S.O.D or as that gone.

       • Hi Dianne,
         I know what you mean re the Hallamshire… tho Louise hasnt spent much time in there thankfully. It’s a tough one regarding SOD, I’ve come to the conclusion that the Dr’s either recognise it exists or it doesnt. I’ve had many arguments with Dr’s in A & E departments regarding S.O.D. if you want email me my address is simonjfthorpe82@sky.com maybe i can help shed some light and tell you what works for Louise etc.

         Simon

     • Hi Diane,
       I know where you’re coming from and I’m also in the UK. Would like to compare note if possible?
       Wendy

       • Hya Wendy,def compare wat works 4 u n visa versa etc.If ok wth u,could i contact you through here as im in agony at mo n desp 2 sleep wen it decides 2 ease off x Fed up of it x Diane x

       • Soz ment 2 say can i contact you 2moz through here x Itl b nice to av sum1 1 who knows wat this pain is like,to talk to,till 2moz Diane.

       • HI Guys,
         Just wondering if you have seen the UK sod site??
         if you haven’t go check it out, lots of UK people on there, I actually met someone who lives just a few miles away!!
         Anyway hope you all have a pain free day

         Betty http://www.sphincterofoddi.co.uk

     • Diane, my attacks come suddenly. I immediately grab a glass of whole milk and gulp it down. Don’t throw up the milk, keep it down. If you can go lay down, try to breath and moan all you want, the pain will go away in about 5 minutes. Been doing this now for 6 years after gallbladder removal. Maybe get an attack of oddi once a year

8. Has anyone had all these painful symptoms without the nausea/vomiting? I feel that my issue is SOD but I don’t have the nausea/vomiting. I’ve now been to 9 specialists and the GI I am currently with is not willing to listen or spend time with me, I’m so frustrated and want my life back! I begged a surgeon to take my gallbladder in December which was functioning at 49% and that seemed to ease the pain only slightly, almost like I gave the real issue a little more room. Also, does anyone know of anyone who specializes in SOD in Utah or any of the surrounding states? or even in the Phoenix location? my email is Giambrone@q.com I’m so sorry there are so many of us and yet grateful that I’m not alone!!! Thank you for any answers!!!

   • I no longer get nausea or vomiting. So you’re not alone!

   • I never had vomiting .But pain that was much like the gallbladder attacks I had only 10 times worse & my pains were very instant & severe.I do not have the pain constantly.The Dr. would give me shots of buscopan & demerol to kill the pain.He would not give me morphine or codiene because they cause spasms & that was what we were trying to stop. I had all kinds of tests & my Dr. was not agreeing with what the specialists were saying. So he asked me to go on a glutten & sugar free diet for a year. I had to stop red meats about 6 months after starting the diet as the taste & smell made me feel nauseous .Then I did some research & have tried cranial sacral & viseral massage. My episodes are becoming lesser & happening less often. I do still eat some spicy foods without anything happening, but my pain was not set off by any foods. My pain is finally under control. My email is kowbe1@yahoo.com If you have any questions.Lesley

     • Give my yahoo account time to renew as I have not used it in a long while. Thanks look forward to any comments or questions.

   • I don’t ever vomit. I rarely get nausea but do experience decreased appetite.

     • The nausea and vomiting doesn’t always happen. I can’t speak for others but I think for myself that sometimes its the cause from the severe and intense pain if an attack comes shortly after eating. When I’m having an attack of the oddi I drink down a glass of whole milk because shortly afterwords the pain goes away, but I do have to fight like hell to keep from vomiting. I fight it because I know relief will come when I keep the milk down.

9. THE DRUG COMPANIES NEED TO MAKE A MEDICATION THAT RELAXES THE SPHINCTER MUSCLE AND HELPS WITH THE PAIN AND DOESN’T UPSET OUR STOMACHS. WE CURENTLY DO NOT HAVE SUCH A MEDICATION.

   • yes it is called Buscopan BUT you have to get it in Canada or Europe!!!
     It works as a relaxer!!! good luck!!

     • I wish it did work!!!! It doesnt help me

10. I too have struggled with this condition, I spent all of last year being sick every time I ate, followed by crippling abdominal pains, I had pretty much every test going, it wasn’t until I was admitted to hospital with serious dehydration that I met A professor who listened to me, he told me to give him an hour and he would return, when he did he gave me the diagnosis of SOD my records showed my bloods fluctuated between being normal and elevated, my bile duct was also enlarged. unfortunately my consultant still didn’t believe I had this condition I still think he thought I was some kind of anorexic as I hadn’t been able to eat anything in 11 months and had lost 6 stone, luckily I liked my food before being ill so had some weight to lose!!! It took another 3 months and my husband continually phoning up before I was finally referred to a specialist in London, In November 2011 I had an ERCP with sphincterotmy they told me the muscle was tight shut, I did contract pancreatitus but because they had put a stent in didn’t get the bad type I was in hospital 5 days, Unfortunately for me I can’t say I’m completely cured, the pain has started to return but not as bad as before, I’ m able to eat soups now which is a big bonus and step up from eating nothing!!.My surgeon has told me that sometimes the muscle heals back together, which is what I think is happening with me, I’m not quite sure what the next step will be??? I live in England and can say hardly any doctor knows about this condition,Ive had to explain it to my GP! The professor who diagnosed me told me he only knew about it as he had just returned from a trip to America where it was being studied!! I have heard diets can help reduce symptoms and would be grateful if anyone could suggest anything??
    I’m currently setting up a web site in the UK for sufferers to gather as I feel this condition is so unwidely known that sufferers are left feeling very alone and a lot of times mental as most medical professionals don’t believe it exists.
    Sorry for the long message but this is the first site I have found and it has got me excited!!!

    • Hi Victoria have just put my story on the site if you read it you will see i live in Northern Ireland if you could give me any information about the hospital and Gastro i will really appreciate it as i want to go in with some knowledge when and if i finally get to see the new guy in Belfast. 1 thing i forgot to say in post am never sick as had nissen fundlipication as a baby due to projectile vomiting at 6 weeks old every doctor has called me a liar about not being able to be sick until they saw me dry heaving for an hour 1 day which made the pain 10 times worse just have to double over or walk when this happens if i can. Hope your doing better.Are there any medications i can take in the meantime to help with this horrible condition am in agony most days.

      • Hi Ann, so sorry to meet another sufferer of this horrible condition, my current gastro doc is called Dr George Webster, he’s at University college hospital London, so far they seem pretty good here, although they haven’t fixed me yet so jury still out! The medication I take are Tramadol for moderate pain, cyclizine which is a good anti sickness, however if I’m having bad attack they won’t stop the sickness! ive just been put on Buprenorphine aswel for when I’m having severe attack, and I also take pro banthine which is an anti spasmodic this one stops an attack fairly quickly, however also stops you weeing if you have too many! Hope I’ve been

        • sorry pressed post comment before I’d finished! If there’s anything else you to know or ask then please ask away, if i can be of any help i will be, we all have to stick together through this illness as we’re the ones who know exactly what each other are going through 🙂 x x

        • Thanks so much for replying any info really helpful for years they told me i was a head case hopefully will get some answers when i get to see new Gastro in Belfast. Short history my mum and brothers live in Worcestershire, in laws in Scotland moved over here 27 years ago with OH 2 grown children and 3 grandchildren. Can’t take Tramadol allergic to it, Buprenorphine patch 7 day release one, paracetamol diazepam for spasms and anti sickness by pain management Doc. Still have gall bladder only its working at 92% so goes nuts and spasms when it finally works. Have never heard of pro banthine will ask as never given anti spasmodic other than the diazepam might work better will ask pain management consultant next time i see him as hes a lovely man. Gastro where i am at the moment just runs away when he sees me now hes flaming useless. Hope you get yours sorted soon and how you get along.

        • could you please e-mail and tell me how you got on with Dr George Webster? I have been referred to see him. mummyhollysmith@hotmail.co.uk

    • Hi did you set up the UK website??? I’d love to follow

      • I’m soooo sorry Wendy that Buscopan hasn’t helped!! Sometimes I don’t get relief either but usually 60-70% of the time it take she edge off the pain!
        The latest is I am using Nitroglycerin! Look into it and do your own research but that along with the Buscopan at times makes a difference!! I read about the nitroglycerin on another site and did my own research! My doctor gave me a Rx for the meds!
        Good luck!!
        Prayers to you for some answer sans some relief!!!

        • Hi saw your comment im from birminham in the uk, the is a uk website thats run by a lovely woman called victoriaif yoy want to check it out. http://www.sphincterofoddi.co.uk

          Hope you all have pain free day

          Jane x

11. I READ THAT BETWEEN THREE AND FOUR MILLION PEOPLE IN THE U.S .HAVE SPHINCTER OF ODDI DYSFUNCTION. OVER A HALF MILLION GALLBLADDER SURGERIES ARE DONE A YEAR IN THE USA AND BETWEEN 10 AND 15% OF THE PEOPLE THAT HAVE GALLBLADDER SURGERY END UP WITH SPHINCTER OF ODDI DYSFUNCTION THAT’S WHY I HOPE THAT THE DRUG COMPANIES MAKE US A MEDICATION THAT RELAXES THE SPHINCTER MUSCLE AND TAKES AWAY THE PAIN AND DOESN’T UPSET OUR STOMACKS. I AM GOING ON 62 YEARS OLD AND I HAVE BEEN SUFFERING FOR ALLMOST TWENTY YEARS. FROM SPHINCTER OF ODDI DYSFUNCTION. I DON’T THINK I WILL SEE A MEDICATION IN MY LIFE TIME. BUT FOR ALL OF THE MANY, MANY,MANY,MANY OTHER POOR SOULS I PRAY THAT A MEDICATION WILL BE MADE SOMEDAY TO RELIEVE THERE PAIN FROM THIS DREADFULL DISEASE.

    • I am dealing with this with my daughter. She had the sphincter muscle cut, but is still in pain. They now want to take out her gallbladder. She is so young. Thank you for all you do to help with this problem.

      • Oh your poor daughter i feel for her i am in the same situation still have my gallbladder never mentioned taking it out had a HIDA scan done turns out its overworking at 92% when it spasms its worse than labour pains, I am 57 by the way, 2 grown children and 3 grandchildren waiting to see a different Gastro in Belfast live in Northern Ireland. Did she ever have it taken out and if so how is she getting along would love to know as i have found nothing to help so far. Hope shes doing better ang your ok its terrible having to watch your children suffer, take care and best of luck.

        • Thank you so much for your encouragement. They took out my daughter’s gall bladder about 3 months ago and so far, she has been doing fine. I was so afraid for her to get out her gall bladder but her GI doctor said she was still hurting after the sphincterotmy and that was the only thing left to do to help the pain, so we had it out. He told us he had to clean our some sludge from her ducts when he did the sphincterotmy, but the surgeon told us he did not see any thing when he took out my daughter’s gall bladder. I had been so depressed because there was nothing I could do for my daughter who hurt daily. I am praying that this worked for her. I want to encourage all of you to keep on keeping on. Maybe something will help. I was just reading about the new surgery being done with the balloon. Take care everyone. Thanks Ann

12. There are 3 types of this health problem…… I’m so glad mine is type 1 . I’ve read about people with type 2 can get some help then it comes back. With type 3 they are having a problem with curing it at all…. I had to have two procedures done before they finally got it. The second procedure they filated the whole muscel around the bile duct. I’ve been pretty much pain free for a little over 3 years. Had so many episodes starting right after I had my gall bladder out, about 15 years ago, that my health insurance threatened to stop paying…… I still get naseated, but I take phenergan……. As for pain, if I happen to have any, I have toredol on hand… Can’t tell you how many trips to the hospita, by ambulance at times and driven there the rest of them… It was horrible until they found the reason for the episodes of stomach pain. I tried hospitals here in my home town and then went out of town. It was an out of town ER that finally realized I had a big problem. They thought it was pancreatic cancer, so I had to go through alot of tests to prove it wasn’t. Thank goodness it wasn’t, had me scared to death for a while. If you have been told yours is a type 1, get the muscle around the bild duct, cut to let the pressure off of the biliary duct. Hope this helps….

13. I HAVE TYPE THREE I HAVE HAD THE SPHINCTER MUSCLE CUT THREE TIMES,THATS WHEN RAW BILE STARTED FLOWING INTO MY STOMACH EACH DAY . AFTER THAT THE DOCTORS TOLD ME THAT THEY COULDN’T DO ANYTHING FOR ME. THATS WHEN I HAD TO LEARN HOW TO CONTROL MY PAIN ON MY OWN . YOUR WRIGHT THIS IS A LIFE LONG DISEASE. I HEAR THAT PEOPLE WITH MILDER FORMS OF SOD DO WELL. AND SOME PEOPLE HAVE ATACKS A COUPLE TIMES A MONTH AND END UP IN THE HOSPITAL. IF I DON’T STAY ON TOP OF MINE I WILL HAVE AN ATACK EVERY DAY. HAS ANYONE EVER CHECKED OUT A SITE CALLED (BLOG.THESPHINCTEROFODDI.COM) THERES ALOT OF PEOPLE ON THERE CHECK IT OUT.

    • Hello Bob. A quick history… for 30 years I have c/o of right sided abd pain and pain after eating which I was constantly told it was IBS. It all came to a head when this Dec. my husband found me on the floor crying which landed me in the ER with a diagnosis of pancreatis. After having an ERCP and having my SOD cut I went into another episode of pancreatitis which ended in a 3 day hospital stay and a month recovery. After another MRI I was diagnosed with Pancreatic Divisum ( a congenital defect) again back in for another ERCP and stent which landed me 9 days in the hospital and complications of pneumonia. I am home now 3 wks, still in pain…. pain after every meal and must return to work in 10 days or I will be fired. I am, interested in any suggestions of pain management or what foods not to eat. I do stay away from fat. The more I read I see that this is a lifetime issue and am upset to hear that . I must say that I am finally glad to hear that I do have a real medical problem as for years the docs have made me feel that I am crazy.

      • TERRRI SEARCH, (HOW I CONTROL MY SPHINCTER OF ODDI DYSFUNCTION) AND YOU CAN READ THE SYSTEM I USE EVERY DAY TO CONTROL MY PAIN.

14. I have had sod for 5 years since my gallbladder was removed. 4 years ago .I had an ERCP The procedure was unsuccessful and I developed pancreatitis-hospitalized for 11 days in severe pain.Since then I have (mercifully ) infrequent but acutely painful episodes. The medication that works for me is donnatal elixar (an anti spasmodic).two tsp mixed with maalox. My husband applys a hot water bottle to my back and I tough it out for 20 minutes to an hour.It avoids trips to the ER which are not helpful anyway

15. Good morning to all straight from the Philippines. just got out of the ER a couple of hours ago and i am amazed that all ER doctors are not aware how to treat SOD symptoms especially the pain. got two shots of two different pain reliever (nubane and tramadol) and none gave me relief. till i asked the er doctor to give me another. they administered one final shot of pain reliever and it is KETEROLAC. which immediately relieved me of my pain. there are also available pills that you may want to try out to control pain. the generic brand is TORADOL.its an OTC brand which you can buy without a prescription. buscopan tablets are useless to me as tramadol tabs. the only problem to taking keterolac is it’ll make you feel nauseous and may cause you to vomit more often than not. this could only be my body’s reaction to the drug. thank you very much. hope this will help some of fellows here who are still in search for the right and effective pain reliever to control pain. Good Luck to all of us and i wish everyone well.

    • Just a question….I have been told that torodol is a drug that should not be taken for more
      than 6-7 days and should not be used if you have any kind of kidney problems. Do you know anything about this?

16. I just happened to looking in my bookmarks, and found this sight again. I too have had sod, it started after removal of my gallbladder. It was VERY hard to diagnosis and took about a year. I did see a Dr. at Northwestern Hospital in Chicago. During the first ERCP, a stent was placed to open the muscle. I did have septic shock, about a week later. My spincter was completely closed,and my digestive system was so sick, I’m sure was the cause of this. After having the stent six weeks, it had to be removed, as a stent cannot be left in as it is in your digestive system. It always came back, I had several more ERCP’s with stents placed and kept the longest one in six months. The goal was to stretch the muscle so it would stay open. I never had a problem with pancreatis, and I know that was always a possibility when placing or taking out the stent. Last April I had billinary bypass surgery at Northwestern, My GI Doctor, said most of the time stents will work, but I was one it did not work for. I know how everyone feels here, but you don’t have to live with this pain. Since having the surgery, i have my life back. Good luck to everyone, I am so very fortunate that I live sixty miles fro Chicago, and had my GI Doctor that I did.

    • HI.
      Who was your doctor at Northwestern?

17. Hi all. I dont usually write posts however feel I had to after reading many of your posts. I live in Edinburgh, Scotland and yesterday I was diagnosed with SOD. I had my gallbladder removed just over a year ago and have had the same symptoms as many of you since. I have waitied 7 months to see a gastrointerologist on the NHS. I finally joined Bupa and had my appointment was yesterday which is when he diagnosed SOD. My consultant has urged me to have the Endoscopic proceedure (sniping the muscle) and I am now waiting for the appointment. I cannot believe that many of you have/are suffering with the pain for this long only controlled with oral medication. I too am sick after eating a meal which has now raised suspicion as people (including my fiance) are now acusing me of being bulimic. I was delighted after my appoinment yesterday having discussed this with a consultant who has researched this over the years. It was great not to have a GP sit there scratching his head and putting this down to dyspepsia (chronic indigestion). I am 28 yrs old with no history of any other illness. Does anyone experience really bad bloating and horrendous belching after eating?

    • Yes and Yes to the last 2 symptoms but never vomit as un able due to pyloric as a baby is there anywhere in Scotland that treats this as when i finally get the appointment the gastro in Belfast can refer me to any hospital in the UK but somewhere in Scotland or around Birmingham would be best as i relatives that live in both places and would at least have some support.

      • Ann,
        I live in Edinburgh and was diagnosed with chronic type 3 sod last year.

        There are excellent treatment strategies available in this city.

        It is imperative that you understand that this condition is very complex and treatment is not straightforward or without significant and serious risk.

        Please get in touch on richard@ten2two.org or 0795 0399 five six four.

        Richard

      • Hi Ann,

        I have just had the ERCP proceedure on Wed 27th June. I had this done on NHS although my inital referal was through BUPA. I have had a stent put in my bile duct and also in my pancrease but the one in my pancrease should come away itself in the next couple of weeks. Not feeling the benefits as yet but still a bit groggy from the sedation. No complications at all. Just feeling a yucky. I’ll keep you posted folks.

        Lynsay

    • Linzi,Ive been asked numorous times when was my baby due because of the bloating.I even used to waddle n hold my tummy.Sweating drives me insane it runs out of me yet iv got goose bumps?

18. Hi, I am from Portsmouth, England and am in the process of being diagnosed with SOD, I have been referred to a specialist at the London Hammersmith hospital, Called Doctor Simon Westabe. The general diagnostic is an ERCP after having an MRCP, endoscopic ultrasound and blood tests for liver function etc. I have been a sufferer for a few years now and am 22. I have my Gall bladder removed last April and had continued pain ever since. I was put on Pethidine for the pain, along with Pregablin and coracten. I am now on Zomorph and oromorph for break through pain, pregabalin for neurological pain and coracten (which is a blood pressure pill) to try and help with the pressure relating to SOD.
    I have had all the relevant tests but the specialists are redoing them to ensure that they see what exactly is going on. It is a rare condition in the UK, and many doctors do not know what it is.

    Does anyone have trouble with there weight with the condition? I can fluctuate a stone in a day, it could be the amount of tablets i am on. What foods do people stay away from?
    Its so nice to know that there are people in the UK with the same condition, not that i thought i was the only one lol.
    Lea

    • Have you had any Botox injections? I’ve had 4 now over the past 18 months and they really help (temporarily) with the pain. I’m usually almost symptom free for 2-3 months. The GI team at Southampton General Hospital were the ones to recommend it.

      I’m having an ERCP in the beginning of May although I think the doctors would prefer me to see a specialist in London first as they only cut the muscle to the abnormal duct rather than the muscles around both ducts. To be honest, I don’t really know what to do about it. I don’t think I can wait much longer (which I’ll have to if I see the specialist) but I don’t want to have the ERCP and end up worse off. I’m managing fine now on the Botox but they’ve said that they can’t keep doing it every few months.

    • Hi, I live in Gloucestershire, uk, I was diagnosed with SOD in October kept year, after a year of hell and lots of tests finally got referred to University College Hospital London, I’d had an mrcp which had shown my bile duct was dilated, my liver function tests had also fluctuated, I’d also lost over 6 stone as food just brought on that horrific pain,my consultant Dr George Webster diagnosed SOD, so in the november I had ercp and was supposed to have sphinctor manometry testing aswell, but he said when he got to the duct it was shut tight so diagnosis was type 1, they cut my muscle. for couple of weeks i had relied unfortunately for me tho symptoms slowly returned, so I’m now waiting to have another mrcp to see whbus going on. I’m on tramadol for the pain as oramorph brings on an attack I take pro-banthine for the spasm. My weight although had dramatic weight loss is stable but i can drop 6 pounds in one night, then gain it again the following day! Its soooo nice to have contact with people in the uk, as felt so alone with this condition as no one seemed to know much about it here 🙂

      • Sorry few spelling error’s in my above post was using predictive text on my phone!! Where do they inject you with botox?

        • They do a few small injections around both muscles. The ampulla? I assume I paralyses the muscles in both ducts as they don’t know which one is causing the problem. I’m just concerned because my problems started when I had glandular fever and an enlarged liver and spleen. My liver function tests have been normal for a while now but still in pain, particularly after eating. Everyone else with this diagnosis seems to have it after gall bladder removal. I’m worried they’ve got the diagnosis wrong now! I don’t really want to risk pancreatitis for nothing.
          The botox is really good though. I’m one of six girls in their 20’s being treated at Southampton. It’s helped me regain my appetite and the weight I lost. Also, they no longer think I’m crazy and experiencing psycho somatic illness, which was the worst feeling in the world.

        • I have to say my symptoms started when I had my gall bladder removed, however I have spoken to people in America who had SOD and still had their’s so I don’t think its the Oly way this occurs. If the botox is helping then it sound’s like you are having spasms of the muscle. When I had my op in November they put a stent in pancreal duct to help prevent pancreatitus, unfortunately I did get it but not the life threatening one I was kept in hospital for 5 days and slowly recovered. I guess if they won’t continue giving you botox injections you’l have to seek an alternative, a lot of people I have spoken to have had great success from having the muscle cut, I was happy to have it done as my life was pretty grim living with the pain.Sadly I am m8 a success story at the moment, and if they want to cut my muscle again I Will ask that they stent the bile duct so I know the muscle won’t be able to contract. even though the first op hasn’t worked for me and it caused pancreatitus I would still happily proceede again as the pain is intolerable. It was the best news when I was diagnosed in London as I’d spent nearly a year with a consultant who I believe thought I had anorexia and mental issues!, thankfully my gp fully believed my illness was genuine, by chance I happend to meet a consultant in my local hospital when I’d been admitted through this illness who had just returned from the U.S where he’d been studying SOD, it was through him I got refered to London. its so nice to be able to speak to people in the Uk, even if we can’t help each other we can offer support. 🙂

      • hello there l’ve just been reading your letter about your SOD ,which after 10 years of going back and forward from the hospital and gp ,this is what they are testing me for at University College Hospital some one is doing something , l went on holiday to Atlanta USA and saw a Doc over there cause l was in so much pain ..she told me as we were going home next few days to go to my doc’s and tell them l had Gallstones , but l couldn’t have got no gallbladder it was removed nearly 10 years ago , after being told l had heart burn ( 0 is no pain …..10 is childbirth ) which made my pain at least 15 as l have 4 children and would do it all over before that flipping pain ..but no got palmed off until l was so ill l was in hospital for 6 weeks ,lovely shade of yellow and very ill .when l did get home from USA l went to my doc who moaned l was being told the wrong infro but was sent for a scan only to be told l had Bilestones of which l had an ERCP to sort this out ,but it didn’t last long , sometimes the pain is so bad and have been in hospital a few times but try to get on with it cause l belive what Doc’s tell me and so been trying to get over it all myself .but on my last app l went mad and landed up getting very loud and shouting at doc , who then said all he could do was get a second view on my problem THANK GOODNESS as am at least being tested now and have had an MRCP just waiting for the results now , heres hoping you have got a way to control your sod and would love to hear any tips you may have

        • Hi Elaine,
          Fingers crossed you get sorted, half the battle is finding a good hospital and doctor.
          my website is now up and running http://www.sphincterofoddi.co.uk there are quite a lot of sufferers who visit regularly, as they are generally from all over UK, there a quite often people who may live close who have good recomendations for dr etc.
          My condition is still very unpredictable, I have had some improvement since my last proceedure, however Attacks still come along frequently and now I have added pan real pains as well 😦
          I am currently looking into non invasive ways of keeping sod under control, and will report if I find anything that’s good!
          Hope you get sorted soon and you have a pain free day xx

19. Thanks for the advice. It’s greatly appreciated. And it’s a relief to talk about it and to be taken seriously. For a while they almost convinced me that I had mental health issues and was making myself sick. Good luck with the specialists in London!

20. I’ve been suffering with severe pain for the past 18 years since having chronic pancreatitis. Have had so many tests and misdiagnosis that I was beginning to feel that there wasn’t and answer for my pain. Finally referred to gastroenterologist and after tests was diagnosed with SOD. I take a muscle relaxing drug called colese and have found it to have fairly good results. I also watch what I eat, no fatty foods or too spicy foods. Occasionally I will get pain, but can cope with so little attacks.

21. Hi, Sorry i have not been on for a while. I get a lot of pain when taking Oramorph, but just thought it was a bit strong for my tummy. The specialist in London said about being put on Oxycotin or something so i am waiting for my doctor to switch me over to that.The waiting list for The Hammersmith in London wasn’t very long, about 20days. I was told around 40days which isn’t very long, and they said that they can get me in for my tests in a few weeks. So i’m happy after waiting ages and with people thinking i’m mad!!
    Hopefully the new tablets will help. I hope you are all well (as can be) and that you are all getting somewhere with being diagnosed, treated or preventing the pain.

    • Hya Leanne,im sufferin 1 of the worst bouts of S.O.D ive had at the moment,this is horrendous as ul know.My G.P put me on Oxycondin liquid and slow release Oxycondin tablets.I was on Oremorph and Tramadol.The Oramorph made my spasms much worse and when i had gallstones(14yrs),the Tramadol worked really well even making me a little too relaxed.This time its doin nothing for this level of pain.Start the Oxycodin SR tabs 2moz so fingers crossed they work.The liquid is definetly better anyway.Hope it works for you,Diane.

22. Spot on with this write-up, I actually suppose this website wants much more consideration. I’ll probably be again to read much more, thanks for that info.

    • http://www.sphincterofoddi.co.uk 🙂 a new site that needs support

23. I got my appointment through for the endoscopic ultrasound with the specialists at the hammersmith, its on the 16th May. So not long to wait for the appointment at all. Hopefully they will do most of the tests in one day.
    Hope you are all keeping well x

    • My ERCP got cancelled so now I’m on the waiting list to see the Hammersmith specialist. Hope everything goes well for you.

      • http://www.sphincterofoddi.co.uk This is a new site that needs support 🙂

24. Hi Sam, So far they have been brilliant at the Hammersmith. You should be referred to Dr Westaby’s team. The waiting list isn’t long. If you dont have the appointment yet, ask your GP to find the Gastroenterology team at the hospital on his computer and print of an appointments form, if you go online you can pick your date and time. I was told the waiting list was about 40days but i had an appointment within 24 (could have been 20 but had other hospital ap’s) They explain everything to you, are so understanding and they KNOW what we’re saying!!! I had my first appointment on 18th April, He said he wanted to check all tests again so he knew what was going on as I was left for months (9 months after my gall bladder surgery) being put on every tablet going. Blood test on 18th April straight after appointment, I had my Endoscopic Ultrasound Today 16th May, and got my results straight after from the doctor that performed the procedure. They did not find any abnormalities, so an ERCP is probably next, but this will be discussed on 27th June. Between this time i will have an MRCP, an ultra sound and another set of bloods. I think they will be on the same day, i think you can request it. So overall so far they have been brilliant, No delays, fast appointment times and so much support and advise about your options. Hope you get your appointment soon, definitely ask for an appointment form. It was very quick.
    Hope you are doing ok and your not in too much pain.
    Leanne

    • http://www.sphincterofoddi.co.uk a new site thats looking for support 🙂

25. I am in exactly the same boat but i still have my gall bladder unlike most on this site. I live in Northern Ireland, UK by the way. Started off 6 years ago rushed in to hospital terrible pains under right ribs did US no stones found accused of being anorexic/ bulimic all in my head kept me in for 2 weeks and logged everything i ate then said it was IBS put on ADs and antispasmodics didn’t work.Sent to see a counsellor and dietician she said it was on my records i was on Creon never been on them in my life never offered would take them if i thought they would help. Didn’t know at the time put on records as severe IBS with possible SOD no one told me good old NHS for you. In and out of hospital like a yo yo every test known to man and some not known had an MRCP which i wasn’t told about finally found out last year when i got my reports from GP went back to Gastro said there was nothing they could do for it here at the hospital i am under carry on seeing own GP sent to Pain management. Gastro said operation was to risky and no one qualified here to do it knew of places in Scotland and England but none here. Said they would do a Lap to see what was going on thought great might be getting somewhere at last turned out it was done for Gynea reasons why? nothing wrong down there pain in totally different area. Back at Gp to see report about Lap said everything was fine told him Gynea said it was a Gastro problem GP said didn’t believe in SOD diagnosis asked him if he knew i had recieved an MRCP NO he didn’t came home and researched it and went back in with evidence then thought OMG perhaps it does exist Pain management consultant had already told him this then asked if i would like a referral to main teaching hospital under a Professor of Gastro in Belfast well yes please so now have to wait an age to see him under the NHS getting to the end of my rope so to speak. If i do get to see him will be asking if he knows how to carry out the op has he done any before if not can i go to either London or Southampton. After everything i have been through i don’t see why they shouldn’t pay to send me to another hospital on the mainland as we say never been so mad at not being given the facts at the time would have saved me a lot of grief. Sorry post so long just so mad.

26. I cannot believe there is such an outcry for this condition. This original article was written in 2005 and people are still responding to it. I just wanted to comment that I found a couple Groups on Facebook…http://www.facebook.com/groups/18147345653/#!/groups/265022936851341/?notif_t=group_r2j_approved here is one of them. This is a great way to get and give up to date information that may be missed otherwise. It is not my group but I will be continuing to communicate on it as I continue down my journey with Type III SOD.

27. Hi all – does anyone know of a specialist for SOD in Florida? I’ve been suffering for 6 years, have not found the right doctor who can treat this condition or who has knowledge of this condition….. any ideas??

    • Don’t rely on Dr. Ramondo at Mayo in Jacksonville. I went there and he told me I “am affraid to gain weight”.
      Your best bet is to look up gastros at a nearby hospital and look at their profile. They all have special interests and the doc who Dx me (gasto # 6 in 3 years BTW) is a gastro who has a special interest in the Biliary Tract. Their special interest is very important. I was also Dx with Gastroparesis at one point and seeing a regular gastro was very different than seeing a gastro who specialized in motility issues, like Gastroparesis.
      Good luck! God bless

    • Dr. Peter grubel, ormond beach at the Borland Grover clinic. I have sod 3. Have had sphincterotomy with six months pain free. Pain has returned but Dr. grubel is a wonderful and caring physician.

28. There is a very active SOD UK facebook group
    Been running since December.

    Contact at
    http://m.facebook.com/home.php?refsrc=http%3A%2F%2Fm.facebook.com%2Fcheckpoint%2F&locale2=en_GB&_rdr

    Or email me
    richard@ten2two.org

29. Victoria,
    nice site, we have a facebook page
    https://www.facebook.com/groups/331983286841902/

    for UK SOD sufferers and we launched a website back in March:

    http://www.wix.com/rp1778/sod-uk-v14

    I haven’t got round to arranging a domain name yet but perhaps there is someway we can bring these sites together? We are looking into setting up a charity for SOD patients as well, probably registered in England.

    Thanks to Judi Sohn for her excellent blog. There are a lot of SOD sufferes out there but due to the misunderstood nature of the disorder by diagnosticians it often takes at least a year to secure a diagnosis. I live in Edinburgh, Scotland and am fortunate to do so compared to some I know who live in more rural areas. Even with the resources of a teaching hospital and a world leading GI function it took nearly a year to diagnose. Much of this was due to NHS waiting lists but I still consider myself fortunate to have access to the free healthcare – I spent a total of 3 months in hospital in 2011 and had tens of thousands of pounds worth of tests, compared to some of those I meet who are less fortunate to have to pay for healthcare or top up insurance. It must be the most helpless feeling in the world and you have my utmost support and sympathy.

    My personal story is one you have heard before:
    For at least 10 years I started to feel a burning cramp in my right upper abdomen, frequent fevers, pallid complexion, little energy, digestive issues etc…
    By September 2010 I was concerned enough to seek medical advice, I’d been holding down a large corporate job for several years, was travelling by car in excess of 1000 miles a week on the uK’s congested roads and pulling 40-50 hours on top of that in the office. By January 2011 I was in hospital for the first of 5 stays that year.

    January 2012 I was diagnosed with Type 3 SOD – as mentioned above, there is not really any cure for Type 3 – it seems to be most common in men. SOD in general is more common in women simply because Type 1 and 2 SOD can be a complication of a gall bladder removal and women are more likely to suffer from gall bladder disease.

    I would like to stress that SOD is no picnic. As an active 40 year old with a successful career and young family I thought that this the sort of condition that could be easily fixed and was frustrated and angry that the consultants seemed to be delaying the ‘fixing’. It wasn’t until this year that I realised that the risks involved in treating any type of SOD are large and become unacceptable with Type 3 – so I’m stuck with it. Pain management is the order of the day and I now have the following:

    200 mg tramadol, slow release twice per day
    90 mg nefopam three times per day
    1000 mg paracetamol (Tylenol to you transatlantics) four times per day
    3 x 5mg 15cm lidocaine anesthetic patches worn overnight
    I also wear a tens machine during the day and it is on continuously

    bad days I am in bed and take oramorph (morphine syrup solution)

    I usually take a walking stick out with me as attacks can hit at any time and it also keeps others away from accidentally touching my side…no I don’t beat them off! they just give me a wide berth!

    Please feel free to contact me and also to join the facebook group above and check out the website

    all the best

    Richard

30. Guys, I may be trying Magnesium injections soon. For SOD. How I doscovered this is that I saw 26 docs in less than 3 years trying to figure out why I am so sick. I see an Endocrinologist for Hashimoto’s and a slightly hypo Pituitary gland. The thing about him is that he practices Integrative medicine also. I came to him thinking I had Superior Mesenteric Artery Syndrome. Well, when I was in his office he gave me a shot of Magnesium and explained that he has given this to patients to treat Migraine Disease (which I have) Seizure disorder and many other health conditions. Well, it took my pain away with in a couple of minutes! He told me to take Magnesium in pill form and gave me a Rx for a calcium channel blocker. He said if these didn’t work we will do the Mag shots. Well, it didn’t work, ended up in a new GI’s office, one who specializes in the Biliary tract and he told me that a CT scan from 2 years ago showed a dialated bile duct. An MRI from a year ago showed an enlarged liver. Docs were ignoring those 2 findings. On top of all that, my GB was taken out from functioning at only 13%. I never got the slightest bit better and they never found anything wrong with my GB. I am now diagnosed with SOD.
    My GI is trying to put me on a combo of Cymbalta and Remeron to block the pain and nausea. When I first came down with this and my Pituitary gland went out docs kept blaming depression and panic disorder and gave me so many antidepressants that never worked, just gave me terrible side effects. This is why I am now going back to my Endo to try the Mag shots. The only prob is after he gave me the shot, I went home and ate and the pain came right back. I am 5’10 and 103 lbs. Scary thin. I am trying to gain weight. I really need to find a safe dose of the Mag that I can give myself 3x a day. I see him July 10th, so I will find out then and let your guys know.
    Also, I eat through the nausea and pain. I eat and eat until I am unable to. I can’t gain weight. My doc thinks I am just not eating enough. Do you guys think it makes sense that if the S of Oddi blocks the enzymes and bile from the duodenum, the food wont break down enough to absorb? My GI said it doesn’t and that I am probably not eating enough. What do you guys think?

    • Try taking pancreatic enzymes (Creon) to break down the food so it is absorbed better and then try Buscopan for the spasm of the SOD. Have to get Buscopan in Canada or Europe. Good luck and hope you gain some weight!!

      • Well, I tried pancreatic emzymes in the past and they didn’t help. I just now saw your message Karyn and it’s funny that I am now reading from lots of people with SOD that Creon is the way to go. That is not what I was prescribed. I wish I saw your reply earlier!
        Anyway, I am in the hospital right now from an ERCP with sphincterotomy and I am in so much pain, but no pancreatitis. 2nd day here. I know they are going to send me home today reguardless.
        I don’t think the Buscopan will work for me, unfourtunately. When doing the ERCP they found my SoO wasn’t even spasming. It was just closed very tight. They think due to a birth defect. The docs are calling it Papillary Stinosis but there was no scarring or signs of inflammation, so that is how they are coming up with it being from birth. Plus, I started complaining of symptoms at 12 years of age. Pretty young for this. I knew my ‘SOD’ seemed different from other people. I never had flares, the pain and nausea was always there, even when waking in the morning. I never had days or weeks of mild to no symptoms. Just these odd things that didn’t align with everyone who sufferes with this. I really hope we all find answers, this disease is so painful and life changing.
        I am in so much pain I have a feeling I am not going to get better but we will see. I will keep everyone posted, just in case someone comes on here looking for answers themselves.

        • Hi Renee,
          I am sooooo sorry to hear u r in the hospital!!
          Yes after an ERCP the pain is horrendous!
          I had that and a sphincterectomy then got pancreatitis. Ugh
          If you anatomically have a narrowed/stenosis sphincter then you may be right that Buscopan won’t help you bevause it is an anti
          Spasmodic. But I actually think if the doctors
          Were able to open it up then u might actually be better off because that should really help! Whereas those of us with continued spasming for no reason have to keep searching for “fixes”. I also wonder if a stent would help you as well!! Look it up on Wikipedia and research it on dogpile/google. My prayers are with you and know your pain!!! Try to keep your spirit & faith up!! Positive attitude is important!!
          Keep me posted!!

31. I have experienced pain in the upper right quadrant for over 20 years, but it was never serious, recently it has become more serious. I do not experience the nausea or fever that others have experienced, but I am tired of the annoying pain. I have had my gallbladder removed, scoped, scanned, but no doctor has ever mentioned SOD. Maybe I’ve found a name to attach to my condition. I have an appointment with a new gastro doc in a few days. I am going to tell him about what I read on this site and get his reaction. The symptoms listed here sound more like my condition than anything I have found before. I live near Nashville, Tn. and if I have any luck with this doc I will post the results. I feel the annoying pain as I type.

    • We think my daughter had S of O, We used Dr. Pruitt at St. Thomas Hospital. He teaches students as Vandy how to do the ERCP procedures and knows about it. His nurse is wonderful. You mght want to try him.

    • Hello Gary:

      How did it go for you? Who was your doctor? My daughter was diagnosed with SOD. We went to Dr. Pruitt at St. Thomas. I would recommend him. He is a person of few words, but I was told he teaches students at Vandy how to do the ERCP procedures. Hope you are doing ok.

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33. I have been very successful on a no fat or oil diet. I follow the diet by Dr. Caldwell Esselstyn, Jr. found in his book ‘Prevent and Reverse Heart Disease’. I have become a Vegan. MRCP showed enlarged biliary tract from sphincter to liver and I also have abnormal liver function. I have not had the ERCP because of the possible side effects. As long as I have mild to moderate discomfort from the URQ I will continue as I am. Has anyone else tried this type of diet?

34. I wouldn’t do a no fat or oil diet. Maybe short term, but not for long. The reason is we need fat to absorb fat solouble vitamins A,D,E&K. We also use cholesterol to make some hormones. Especially steroid hormones. And who knows what else our bodies need fat for.

35. IT’S 9AM WHERE I’M AT AND THE WAY I CAN TELL IS MY SPHINCTER MUSCLE IS STARTING TO HURT. IF I DON’T TAKE TWO TYLENOL AND A PROTON PUMP INHIBITOR WITH FIVE CRACKERS AND A GLASS OF DYSTILLED WATER MY DAY AND MY LIFE WILL BE RUINED . I HAVE BEEN CONTROLING MY SPHINCTER OF ODDI DYSFUNTION NOW FOR ONE YEAR. IF YOU WOULD LIKE TO READ MY SYSTEM SEARCH “HOW I CONTROL MY SOD PAIN” AND LEAVE SPACES BETWEEN THE WORDS AS I HAVE. FOLLOW IT TO A TEE IT WORKS FOR ME, WHAT HAVE YOU GOT TO LOOSE. GOOD LUCK

36. Hello,
    Does anyone with SOD III live near Orange County, CA? I need help and a recommendation of a gastro/specialist who knows more about SOD and how to help me!
    I live in Aliso Viejo which is just north of Laguna Beach, just west of Mission Viejo, CA.
    Thanks so much!

    • Dr Simon LO at Cedars Sinai!!! Very Knowlegeable and won’t do surgery unless he knows he can help you!!! Good luck!

37. I have just had my second ERCP within 3 months, the first with cutting, this time my Dr. “stented”. It has been 3 days and I feel like a clip is in my upper right abdomen as well as my usual pain and I can’t sit up because of the nausea. Has anyone else had symptoms like this after having a stent? How long will this last? He said he would leave the stent in for 2 months. Right now I don’t think I can make it 2 more days. I would appreciate any answers. What has been your experience?

38. I tried the Mag shots guys and it helps minimally.
    Has anyone lost weight on with this diesease? I can’t gain a pound that I lost and it is frustrating. If I get a sphincterotomy and get panceatitis, I really think I will die. I am 5’10” and 103 pounds. I can’t get a doctor to recommend tube feeding, even though I repeatedly asked for it.
    Anyone else weak and malnourished?

39. I’ve had suspected SOD for a few years now. I finally found something that works for me to relax the spasming SOD muscles. My PCP prescribed Xanax for frequent flying and anxiety, and as soon as I took the first dose I noticed my stools going from almost colorless to 10-shades darker overnight. Since then, I fly about once or twice a month and use Xanax as necessary. I am convinced that this is what did the trick for me. I had high liver enzymes as well, but after losing 30 pounds — these haven’t ever come back. We suspect it may have been fatty liver in combination with SOD, but we may never know unless the SOD comes back and the liver enzymes return while I am at a healthy weight. Best of luck to you, and try the Xanax!!!

40. p.s. — Don’t focus on the pain — Focus on restoring your bile flow. If you don’t get it flowing, and get your stools nice and dark — You are at risk of bilary cirrhosis. Most people get hung up on the pain, but you really need to find a medication to relax that darned SOD muscle! Even though I’ve got my stools back to dark, and have gotten rid of the pain — I still haven’t been able to gain much weight. I’ve also given up all processed sugar & hard alcohol though, so I think it’s part of a dietary change mainly. I’ve gained about 5 pounds back since getting SOD under control, so expect it’s going to be slow going.

41. I’m 18 and had my gall bladder out last december. This summer I started gfetting the pains again and doctors kept saying there was nothing wrong because my liver blood tests were only slightly raised and my white blood count was only slightly abnormal. I have have 5 episodes of extreme pain resulting in me being taken by ambulance to hospital all in 3 months. Im not terribly sure if these attacks are normally this close together with SOD. I’m becoming a bit of a regular with the local paramedics. No doctor has really mentioned anything to me, although the last time i got discharged from hospital, my notes said a possible diagnosis of SOD. Typical for the NHS to not even discuss anything.
    One junior doctor in A&E suggested i was making it up and that there was nothing wrong with me, I just had indigestion. It seems strange that SOD is still being missed and i’m shocked to hear that people are living with it for that long! I dont want to put up with it for another day!
    I am wating to see a liver specialist for the 2nd time and he seems to know what he’s talking about.
    I live in Warwickshire (UK) and am not sure if i do get a definate diagnosis, that they will be able to do anything here.
    They have tried me on buscopan tablets which seems to cause further pain and leaves me feeling worse.
    I have been advised to stop taking the buscopan, and go to hospital if it starts again. They want to make sure its not just random pain that is going to go away by its self.
    I’ve done a bit of research and mine sounds like it could be type 2.
    Is there anyone in the Midlands area that has this and knows of any specialists? I need to know i’m not going mad and that it’s not going to take forever to sort out, i am 18 and am getting depressed from this and i literally have no life right now.
    I have recently got he job of my dreams and they are getting frustrated that I keep getting taken to hospital and being off work!

    • Hi I have a UK site for SOD with quite a few people that visit it, http://www.sphincterofoddi.co.uk If you want to come and take a look at it, we have people from all over the UK so may be able to help you.
      Buscopan didnt help me either but they now prescribe Pro banthine which does reduce the spasm, have you been prescribed any pain relief??

    • Bummer, the ONLY relief I have had is with Buscopan!! It has allowed me to eat and gain 5 lbs. I guess everyone is different but I say it’s worth
      a try. I also use Creon pancreatic enzymes! Good luck!

42. I have found that eating beats has helped my pain. By doing this the bile thins down enough to get through the tight sphincter. It will take at least one month for the pain to go away. Eat about a high a can a day. Good luck

43. First, I am so grateful to find this thread of conversation! As I recall, the first liver panel I had done was in 2004 after describing the pain in my upper right abdomen. Everything came back normal except billiruben was a little high. 2006 brought a trip to the emergency room to find “nothing” abnormal. It has been years of very random attacks and memories of laying in bed at night instructing my husband, as I lay as still as possible from pain, “if I go unconscious or die, please tell “them” (the doctors) about the pain in my upper right rib cage.” I already have an extreme intolerance for cream and milk (out both ends within two or three hours of any amount of consumption) so I thought it was a part of that. So….currently I have had another blood test and abdominal Ultrasound which both came back….guess what? NORMAL!!!
    The story goes on and on….I’ve traveled all over the world…India China, Japan, South America, Central America, Mexico…oh I must have picked up SOMETHING from SOMEWHERE to cause this pain….I’ve given birth to 2 babies and nursed one for two years and am still nursing the younger…”oh you must be loosing weight because of nursing”. on and on and on…..what can it be???? Thank you all so much for getting together and posting…..I am part of http://www.thebestdayever.com and a guy posted that his sister was just diagnosed with SOD and are there any resources to help figure it out. That moment was the beginning of THIS track of understanding. So I would like to share what I have found out since.
    #1. The sphincter of oddi is REGULATED by hormones! The connecting line leads to the pituitary gland. FACINATING…I am currently trying to find someone to check my DIGESTIVE hormones and others related to the pituitary gland and hypothalimus.
    #2. When I take 6000IU-10000IU or more RAW vitamin D3 from a company called Vitamin Code my pain diminishes or disappears.
    #3. I also consume a mass amount of probiotis.
    #4. I believe that my consumption of RAW cacoa which is packed with magnesium has helped to alleviate the pain…now I understand WHY…because magnesium softens and relaxes muscle tissue.. the SO is a smooth muscle by the way.
    #5. I also consume HCl (Hydrochloric Acid 600mg) with red meat or coconut/fatty meals)
    #6. I juice beet root (NOT TOPS) and carrots….helps some during an attack and several days later to get back on track (make sure NOT to put spinach or beet tops in your juice as it contains oxalic acid and is aggrivating.
    #7. I have also gone gluten-free…seems to lessen frequency of attacks and my joints don’t hurt anymore. Seems to be a correlation with PHYTIC acid.
    #8. get Massage regularly to kick in the PARASYMPATHETIC system….all going back to hormones that regulate the spasm of this sphincter of oddi.
    That’s it for now. I am trying to figure out if it is worth the MRI to see if there is a tumour on my pitutary gland that is the source of this chain of events. Hope this information helps someone!

    • Hi Kim,
      I agree with you that when the SO muscle is relaxed I’m in less or no pain! 🙂
      I have used Buscopan which is an intestinal muscle relaxer used for IBS. Can be obtained outside of the USA! Do ur own research and maybe it will help! Also use Nitroglycerin which I researched and first came across on a blog. There is short quick acting for an acute attack or longer acting (12hrs) prescriptions. Also do your own research. Maybe these along with your current routine may also help! Not everything works for everybody….so good luck!! Hope this may help you or someone else suffering with SOD!

    • Dear Angela, I’m writing because of something you said about magnesium relaxing muscle. After having my gallbladder removed 7 years ago I had my first attack of SOD within the first 12 hours after my surgery. While 4 nurses were trying to help me by hooking up a morphine machine, they kept asking what’s wrong? I had no idea or an explanation, I was the patient. A year later I had my second attack and during this absolutely severe pain and trying to hold on for dear life and breath, something told me to grab a carton of whole milk and start drinking. Within several minutes the pain started subsiding and subsiding until it was completely gone. A co-worker was with me and said what in the world happened? I had no explanation. Decided to go on the internet and typed side affects of gallbladder removal. I have an attack about once a year and always grab a glass of whole milk. Last time I decided to time the attack after drinking down the milk, 7 minutes. And then I rest, February 2013. One word of caution, DO NOT THROW UP THE MILK!! I think the nausea and urge to throw up comes from the severity of pain going on in the body. About 2 years ago I spoke to a homeopathic doctor describing the pain and then drinking the whole milk. He said that it made sense because the fat in the milk relaxes the sphincter muscle. My best to you and to everyone who suffers also.
      Sylvia, tottcatering

44. ANOTHER THING I JUST DISCOVERED IS THE SPHINCTER MUSCLE DOSE NOT LIKE COLD STUFF LIKE ICE, COLD WATER, SLUSHIES, ICY SODAS ECT. TRY TO DRINK YOUR LIQUIDS AT ROOM TEMPERATURE

45. Hi I had my gall bladder removed about 8 years ago and continued with the same excruciating pain . I lost a lot of weight was in and out of hospital with no answers until One gastr doctor suspected sod and referred me to the royal London hospital . I was diagnosed after having an ercp and the sphincture was cut that was almost 6 years ago . It helped for a while with the help of amytriptyline to keep the sphincture relaxed I began to get back to normal and put my weight back on ! Until 6 months ago I get a big attach end up in A& E and admitted to hospital twice so was referred back to my specialist in London . I went to see him last week and he said the sphincture can close up with scar tissue or the cut originally may not have been cut deep enough ,he wants me to have MRI first to rule out anything else and if that’s ok then he is going to do another ERCP . I am Boeing constant pain and eating very little I have lost 9 pounds in a weekly GP has signed me of work and uped my dose of Amytriptyline .

    • After years of complaining of right sided pain and an ERCP I was diagnosised a year ago with Pancreatic divisum. It seems to be missed a lot. They also cut my sphinter without any sucess.( which gave me pancreatitis and a 8 days in the hospital) I take Neurotin to help with the pain and creon to help digest. I eat no red meat, no oil except for olive oil, no fried food, no alcohol, little dairy….sugar causes pain, so little sugar. I watch everything I eat, if it’s hard to digest I stay away from it.

46. Hya Simon,1st thing i hope your wife is finding some relief at last.Im so confused.When the ERCP and sphinoctomy have been done does that mean i now dnt av S.O.D?I saw Dr Karahji at Hallamshire last wk.He said its v unlikely ive got it cos of the sphinoctomy etc ive ad done.I found him useless.The bay n ward i was on was disgusting even excreament on the toilet door n blood on the seat(both still there thursday when i made sure i left).My pain is ridiculous.Im all muddled up help sum1 plz x Is it S.O.D or as that gone.

47. Hi My history is similar to many of you, and what my doctor recommended and has worked for me (my last bout was 2 years ago) is to begin a clear liquid diet for 3 or 4 days until you are feeling better…and you will find that you will soon feel better, even though you may lack energy and need more rest. Then proceed to having other liquids (you might want to stay away from citrus juices though), then proceed to a soft diet and gradually add back regular foods staying clear of high fat choices. A listing of the various selections for a clear diet, liquid diet, soft diet, etc. can be found on the internet. There may be certain foods that you are not able to tolerate well such as chocolate, carbonated drinks, citrus fruits or juices, vinegar based foods, onions, spicy food and mint, etc and if so continue to avoid these.

    • I had my gallbladder removed 6 years ago. Had my first attack day after the surgery. When I get an attack (believe it or not) I immediately drink a glass of whole milk and hold on for dear life. I timed the last attack and it took 7 minutes for the pain to go away. DO NOT THROW UP the milk, even if you feel like it. Get by yourself moan and grown all you want while you wait for the milk to do it’s job because it will. I get an attack maybe once a year just suddenly and each time I don’t think I’m going to make it (like call for help). My pain starts it feels above my stomach and in my back with severity. When the milk starts working the pain starts subsiding until its gone, 7 minutes. The fat in the milk seems to relax the sphincter muscle. My second attack I had, about 5 years ago, I was at work when it started coming on and a voice spoke to me to go and get a small carton of milk and start drinking it. IT’S WORKED EVERY TIME.

48. Hello all 🙂
    I had my gallbladder removed four years ago and now feel I am suffering from sod (possibly type 3) this is an amazing website and i love reading everyones suggestions. I will admit that my pain is not as bad as some peoples on here, all the same its annoying esp as i have 3 children aged 4 and under. I havent been diagnosed with sod as of yet but i find that taking amitriptyline and buscopan do help with the pain also having a liquid diet too 🙂 it is a terribly annoying pain and i can feel the niggles as i type. Do not give up people i believe there will be a solution to our problem xx

    • I have always tried avoiding pain medications for just about anything and maybe that’s why I found drinking a glass of whole milk (I’m not a milk drinker) maybe once a week in cereal. Six years ago with my second attack which was very severe it was like a voice in my head said drink milk. I was barely able to drink this milk down but trusted for some reason it was going to help me. My focus was to relax as much as possible while taking in short rapid breaths through my mouth, staying focused. I couldn’t believe it but within about 10 minutes the pain started subsiding where I could now breath normally and was now completely gone in about 20 minutes. I get an attack at least once a year, and I do not restrict my diet in anyway. It seems it has it’s own reason to act up. Sometimes when I try to drink the milk down my body wants to vomit, I guess because of the severity of pain, but I refuse because I know any minute that milk is going to bring me relief. I went to my homeopathic doctor and he said he thinks its the fat in the whole milk that causes the sphincter to open up. For the first time I had three attacks in one week (don’t know why) but every time the milk brought me relief like always. Believe me when I get an attack I don’t think I’m going to make it the pain is that severe. I even broke into a sweat right after one of the attacks subsided. Sometimes leaves me completely exhausted and I have to lay down and rest. But the pain is gone

49. I also have had SOD for 18 years. I have had a severe attack approx. every 5 years {with an ER visit for Demerol to snow me for a few hours} . It seems like they happen after eating a chicken meal. I think I accidently get a piece of fat mixed in and that triggers the attack. I eat a very low fat diet , avoid any known triggering foods and take a 5mg Norvasc daily at 4-5pm. Alcohol in excess also seems to increase the achy bouts. I appear to tolerate 3 drinks a week. I also notice during a severe attack I run moderately to very high AST, ALT levels with an elevated alk phos level. I often can catch an attack early on and eat very lightly for a couple of days and avoid the full blown attack. After a severe attack I eat oatmeal , plain tea or coffee and dry toast for a few days until all the pain resolves. Then no alcohol, no fatty foods at all for a few weeks. It helps that I am a Nutrition Counselor and am very aware of higher fat or hidden fat foods. Good Luck..

50. I RECENTLY STARTED TAKING CLONAZEPAM 0.5MG TABS A COUPLE TIMES A WEEK FOR MY SOD PAIN AND IT WORKS QUITE WELL FOR ME.

    • I too have used Clonazepam or Klonipin and have received some relief. It’s temporary but hey it’s better than not having any relief!!!
      Good luck to all !

      • YOUR RIGHT ABOUT THAT ANY PAIN RELIEF IS BETTER TNEN NO PAIN RELIEF.

      • Try it, drink a whole glass of WHOLE milk when you feel the attack coming on. And try your best not to throw it up or you’ll just have to drink another full glass. It’s sounds I know just the opposite of what you should avoid because of the fat that is in it. Takes a good 10 minuets or so, but the relief does come!!!
        And the pain completly leaves especially if you can lay down for a bit afterwards. I have done this every time I get an attack and with no changes to my diet what so ever my pain leaves. Don’t worry if you can’t lay down while the severity of pain is going on, because I can’t but when the severity passes and you can start breathing normal try to lay down for a bit on your back. The rest of discomfort leaves to. It helps me while I am bent over in paiin to take in very short breaths through my mouth and with short breaths breathing out of my mouth. While at the same time I imagine in my mind the milk is passing through slowly and slowly the sphitzer is absorbing the milk and letting it pass by slowly. This is something that nobody taught me, just listening to my body even for the whole milk.

        • Thank you Sylvia! I will try that but I can only
          Drink non-dairy milk…like almond or coconut. Do u think it will still help? I will try it and let you know as well!!
          Thank you again!!
          May you continue to get relief!!
          All the best,
          Karyn

        • Gosh Karyn I don’t know. I went to a homeopathic doctor about 3 years ago, and he said that it made sense to him because fat does open the sphincter. Hmmmm. I’ve gone on other sites and told as many people as I could, but I don’t think anyone heard me or paid attention. Medical doctors I don’t think listen either, I guess because if its not about a drug or surgery they won’t listen to anything else. Gosh, I hope the almond or coconut milk will have the same affect as the whole milk for you. I don’t know if its only dairy or not, wish I did for your sake!!!!!!!!!!!!!! All the best to you. Sylvia

        • Hi Slyvia,
          Mmmh I will keep you informed if it helps.
          Almond milk has about 3.5g of fat….Probably not as much as whole milk.

          That’s wonderful that you have gone on
          Many sites to try and help people!! Yes MD’s
          Usually are not interested or educated in
          wholistic care too often! I have also read that acupuncture has helped some people.
          I notice that massage helps me sometimes but I haven’t checked out acupuncture yet.
          Well best of health to you!!
          Thank you again!!!
          🙂