That dang sphincter of Oddi again

I’ve been quiet lately, as I haven’t been feeling great.

For years (11 to be exact) I’ve been having attacks of pain on the upper right hand side of my stomach. It happens a couple of times a year, starting with pain and pressure and fever. The fever goes away after a few hours, but then I’m in pain for days after I eat anything.

The first attack happened when we were on vacation in Las Vegas in 1994 and sent me to the emergency room. It mimics the symptoms of gallstones, so that’s what was assumed but ultrasound showed nothing so I was sent home with pain meds. Local doctor said it was reflux. Three years ago, my gallbladder was tested and found not to be functioning properly so it was removed. But I still had a few of these episodes.

A couple of years ago, I did some Googling and I suspected that the problem was sphincter of Oddi dysfunction.

Sphincter of Oddi dysfunction and papillary stenosis are conditions which occur when this sphincter (opening) mechanism is disturbed. When the hole is too tight, there is a backup of bile and pancreatic juices. This can cause pain (biliary colic). More prolonged obstruction may result in bile leaking back into the blood stream, resulting in abnormalities of the liver function tests, or even yellow jaundice (discoloration of the eyes and skin). Also, blockage to the pancreatic orifice can cause pancreatic pain or attacks of pancreatitis.

I mentioned this to the GI in Stamford and he blew it off. He said my problem was a pulled stomach muscle. The only reliable way to diagnose sphincter of Oddi dysfunction is with ERCP which is an invasive test. And it’s rare…certainly less than 4% of the general population have it from the reading I’ve done.

So fast forward to New Jersey. I’m due for a colonoscopy (joy) and I go through the prep (no joy). Somehow, drinking a gallon of Gatorade as the doc prescribed didn’t sit well with me and it brings on another attack. No fever this time, but pain on the upper right side and nausea. In the consultation with the doctor, I had mentioned my history of these attacks and he suggested doing an endoscopy at the same time as the colonoscopy as long as he was going to have me there to see what was going on. The colonoscopy was fine, but in the endoscopy he said he saw some bile in my stomach and he noted that my ampula papilla, the little hole that the sphincter of Oddi surrounds was “fibrotic” (small and hard).

3 days later and the pain doesn’t go away, so I went in for blood work which showed slightly elevated liver enzymes. Not not joy. Monday night I had a MRCP (a more advanced MRI that looks specifically at what’s going on with the liver, gallbladder & pancreas) and that was normal. So my wonderful doctor suggests sphincter of Oddi dysfunction as a likely cause of my problems. I think he was surprised that I knew exactly what he was talking about. Once I get this thing treated I’m tempted to send all the paperwork back to the doc in Stamford with a big “I TOLD YOU SO” stapled to it.

The way to diagnose and treat sphincter of Oddi dysfunction is through ERCP (Endoscopic Retrograde Cholangiopancreatography). It’s like endoscopy, in that a scope goes down the throat, but they introduce dye and watch how it moves through. Specifically when they’re looking for this condition, they test the pressure of the ampula papilla in something called sphincter of Oddi manometry. If it’s too high, they can cut the sphincter right there and it typically solves the problem. There are 3 types of SOD (explained [here](http://www.ercp.ucla.edu/pages/info/biliary/sphincter-of-Oddi-dysfunction.html)). Because I had abnormal liver functions tests, I’m either Type-I or Type-II which means that the sphincterotomy should do the trick.

The big risk in ERCP is that it can bring on an attack of pancreatitis. My doctor does ERCP, but he doesn’t have experience doing this manometry thing so he wants to refer me to someone who does (which will also give me a chance for a second opinion from someone who is familiar with this condition). Now I’m waiting for that referral. I’ll likely have the procedure done in Philadelphia or Manhattan.

[This page](http://www.joplink.net/prev/200111/04.html) thoroughly explains the problem and the treatment.

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2,142 thoughts on “That dang sphincter of Oddi again

  1. , adds to your already elevated anxiety and so raises your anxiety enough
    to trigger your body’s fight or flight response, resulting in the symptoms of an anxiety attack. Some people today may feel just 1 episode of panic attack, while others may have continuing episodes. Medication can be taken but doctors will only want to prescribe medicine in extreme cases.

      • Sorry that you misunderstood me. I suffer with Oddi attacks (big time) since my gallbladder removal back in 2007. Actually had my first Oddi attack a few hours after surgery in fact and nobody (5 nurses) didn’t know what was wrong except to put me on morphine immediately. You know, nobody knows really why, the how comes, the what fores (guessing to put it quite frankly) but that the spritzer muscle somehow has got something to do with it. There are no trained doctors that have answers for it or the cure either, and can only try to help the symptom of Oddi attacks that are obviously connected somehow to gallbladder removal. What I’m doing is just what everyone else is trying to do and that is to survive an attack and looking for answers. I’ve never had anxiety attacks in my life. I stopped charting down everything I drank or ate because it didn’t seem to matter what I ate or didn’t eat or drank or didn’t drink, the Oddi attacks seemed to have its own mind. Now if you want to think I have anxiety attacks, that’s ok because its your opinion. Since my gallbladder removal something changed in my body and I’m trying to put the pieces together and to figure out or understand what it is. Something was weakened in my body without the gallbladder and thus I’m stuck with Oddi attacks. I’m simply sharing what works for me while at the same time searching for answers in all areas of my being that got goofed up the day my gallbladder was removed! Nobody told me that it was a dangerous surgery with a possible side affect that you may have to live with for the rest of your life, which is worse than my gallbladder attacks!!!! What I share are simply puzzle pieces of my surroundings, inside and out when an Oddi attack hits me and if one thing has got something to do with another, I want to find out and share it with other sufferers of Oddi and maybe they can share with me too what they discover as well. Who would think that maybe my mind may be involved to with my missing body part, who knows. If its a anxiety attack as you put it than why does whole milk subdue my Oddi attacks in minutes, why aren’t people who suffer anixiety attacks drinking milk? I visited a homeopathic doctor and shared with him about my Oddi attacks and that when I force a glass of whole milk during the attack (because my body tries to throw up the milk) the severe pain is subdued with in minutes and is completely gone in about 20 minutes. He said that it made sense to him because of the fat that’s in milk relaxes the sphincter muscle.

  2. From all that I’ve read for 4 years now, there is no cure for sphincter Oddi. I suffer also with an attack about 1 or 2 a year now, since 2007, gallbladder removal. I had my first attack 12 hours after the surgery and none of the nurses knew what was wrong with me, only to put me on a morphine machine. Of the 2 or 3 different surgeries for it from my understanding only makes it worse. I’ll tell you what though, when I feel an attack coming on, I grab and drink a glass of whole milk and hold on for dear life while the pain is totally unbearable and even timed it while I waited for the milk to relax the sphincter, took 7 minutes and the pain starts subsiding to where its at least tolerable and then it disappears. A doctor told me a few years ago that it makes since with the fat in the milk, that actually fat, relaxes the sphincter muscle. My last attack was so bad, that when it stopped I broke out in a complete sweat, dripping from my face and I’m not a sweater at all. Sincerely, sylvia

  3. Lauren says:

    I am so sorry you are going through this! I have had this problem for only two years now but
    I have already had 11 surgeries on the area. I get severe pain, and vomiting. I also live in NJ but I go to NYP hospital to have all my ERCP’s. This is a very rare disease and in my case even rarer that even after stents and sphinctorotomies I still get the symptoms. I just wanted to say I know what you are going through and it is very frustrating!
    Lauren

    • Believe me, you are not rare at all, none of the surgeries they recommend help nothing but in fact make things worse. In all my searches over all these years not one person has been relieved from these attacks, not one of them. It’s not even about what you eat or don’t eat as some people try to do to help themselves. There is something that I do when I feel an attack is coming on that shortens the duration of the attack. The last attack (I get them maybe twice a year) I looked at my clock and timed the duration of the attack this time and believe me it wasn’t easy to do while holding on for dear life because of the severity of the pain. It took 7 minutes for the pain to start subsiding so that it was at least tolerable and I could breath normal again. And slowly the pain completely leaves within a total of about 15 minutes or so, maybe 30. But it does leave me exhausted so I remain on my back laying down, with no pain and maybe take a small nap.
      I can’t tell you how many times I’ve posted this information but if I can help someone I will keep posting. When I feel an attack coming on I immediately get a glass of whole milk and start drinking it down until its finished. And because I know the relief will come I try with everything I’ve got inside of me NOT to throw UP the milk (do not vomit), I repeat do not vomit the milk. I asked a homeopathic doctor about why this works for me and he said that it made sense to him because of the fat in the milk the fat actually relaxes the sphincter mussel. This has worked each and every time! It was actually my second attack that (sounds weird, I know) it was like I heard a voice in my head that told me to start drinking some milk and I just did what it said. My first attack was just 12 hours after they removed my gall bladder and the nurses hooked me up to a morphine machine and none of them could tell me what was wrong with me!!!!!! I have to tell you, that even though I know the relief will come, it still doesn’t stop me from thinking to call 911 while I’m going through the pain and or thinking “I’m not going to make it”. The pain is undescribable. One of my co-workers was with me when I had one of these attacks and she thought I was going to die with what she saw in my face. I can’t talk during an attack because I’m to busy taking quick short breaths and holding on for dear life. Just wanted you the reader to know that i know about the pain you get. I pray that God helps all of you!!!!!

      • Dianne says:

        Hi,
        I am so glad I have found this site and that i am not going nuts.
        I have also had severe pain in the upper right quadrant for 4 years. Had my gallbladder out last year and still the pain continues. I cant tell you how many times I have been to the ER and they found nothing. test after test has been neg. How frustrating!! Anyway, the last week the pain has changed alot, from mild to OMG severe , where I am screaming in pain. My question is… Does anyone feel worst when they sit for a while. That seems to be when I get these severe spasms. I see the gastro doc tomorrow and hope he does somthing. I cant live with this debilitating pain.

        • Karyn says:

          Hi
          I have had SOD type 111 for 4 yrs now but thankfully it has improved with the use of Buscopan and nitroglycerin
          ( when really severe). I know that’s not a fix or cure but it has given me significant relief! More than any ERCP or drug the Dr’s have tried! It won’t help everybody but maybe it will help a few of you!! Stress, lying down flat, tight clothing, bras, certain foods & then no reason at all seem to be triggers. I also use EFT ( tapping) for stress & pain relief…. Doesn’t work every time but when it does I’m soooo grateful!!
          I really hope you may be one of the lucky ones that my suggestions can help! Prayers to u and everyone suffering with this frustrating and horrible condition!

        • I seem to get them when I’m dealing with an uncontrollable stress of a situation. But my whole milk intake still works to relieve the pain after about 15 to 20 minutes.

        • Terri says:

          Hi Sylvia, for 30 years I have complained of upper right quadrant pain. It actually feels like something inside is swollen. It gets worse after I eat. After years of seeing GI docs, GYN docs…. the doc at University of Penn it the nail on the head. Pancreatic divisum causing me to have pancreatitis! A congenital birth defect that is an obstructed pancreatic duct. After 2 surgeries(cutting the SOD )and a stent put in, for me it did not help, I am still having much pain, but I can tell you I am happy to know what’s wrong and that I am not nuts like the docs kept making me feel. I hope this gives you some help.

      • Mary Mo says:

        Thank you silvia, i am going to try this with the milk. I had my gallbladder removed in september and have had these attacks ever since. I’ve been for ultra sounds upper GI’s and nothing is showing up. i am convinced that it is SOD, the Doc wants to start sending me for test but i am thinking of going to a Naturapath instead. I WILL try the milk though! I am taking 2 attacks a week, varying from 45mins to 7 hrs….i can’t go on like this..

        • Glad to hear your going to give it a try!!! Your pain should be relieved in about 15 to 20 minutes or even less. Drink the glass of whole milk as though you are thirsty and how you would drink a glass of water. You can stop drinking the milk about half way and sipping the rest of it or just drink the whole glass of milk at one time. Can I mention one thing that I noticed just recently that I also was aware of in the past with my attacks but more so recently. When something is going on that is causing deep stress within me, that’s when I start feeling a small amount of pain developing. That’s when I remember about my past attacks and get a glass of whole milk immediately. You can actually stop the full blown pain if you can catch the symptom at its very early stage. I think the stress factor is fear based, the kind of fear that comes from something that you may not be able to fix or out of your control. Something to think about and note of what was going on in your head before an attack. Can’t wait to hear from you!! I pray to our Heavenly Father to help you as I believe that is what He did for me.

  4. Kelly says:

    Hi!
    Have you tried a medicine called Ketorolac? It’s an anti-inflammatory and relaxant and works for me pretty well!

  5. Michelle says:

    I had an attack after eating blue crabs last night. I am thinking maybe because I just ate too much. Typically my triggers are medicines (NSAIDS, pain medication) or too much alcohol. I recently started taking gabapentin for migraines and read that it is used to help prevent attacks. Apparently not the case. When I get my attacks, I take a teaspoon of donnatal elixir. I don’t think I could drink (and keep down) a glass of whole milk when I’m NOT having an attack, much less during one. I will not have the surgery. Too risky. Already have a family history of pancreatitis. Not worth tempting fate. Good luck to everyone out there! I always tell people who aren’t familiar with the condition that the pain is worse than anything I have ever experienced with surgery and childbirth.

    • Amen about the pain!! I always start drinking the whole milk with an attack because I know relief will come with it!!!!! And your right about the throwing up part it takes sheer guts, stamina and determination to keep myself from throwing it up!! Because while trying to just breath alone, is difficult enough because of the severity of pain. I even have to take short breaths and blow out (just like you do when your about to deliver a baby) I remain only (O-N-L-Y) focused on the RELIEF that WILL come!!!!!!!!! Thank God!! its come every time. A homeopathic doctor once told me in his office that it made sense to him because from what he knows ( FAT), and that”s in milk, is known for relaxing the sphincter muscle. You won’t hear that from regular doctors because they don’t study any other kind of medicine than drugs or surgery. And I’m just a regular person like you. From what I’ve learned when people have these surgery’s for Oddi, they end up suffering from pancreatic attacks as well on top of Oddi. Please don’t have the surgeries, and try the milk and see what happens, that way you’ll know!!! And be determined, in your mind, in your body and soul that you will not throw up NO MATTER WHAT it tells YOU!!!! It will be difficult but it can be done and it never gets easier with each attack, each attack will take the same determination! YOU HAVE TO FOCUS on the result and that is, the pain will leave you. Try to get by yourself so you can focus on the attack that is attacking you so that you can fight with everything you’ve got inside of you!!! Picture the milk traveling slowly through your body and coming to the sphintzer and soaking it….with its richness!!!!!!

      • Kim Self says:

        Thank You for your post…I am allergic to cow milk…but use GOAT MILK instead…Does the trick! And Acupuncture and chinese herbs. Keeping it under wraps for now and soooo thankful for the milk idea! Wierd I tell you Just wierd AND works!

        • Sandra Field says:

          I think i may have Oddi attacks. I had my gall bladder removed back in 1980. My first attack happened in 1992 after having taken codeine for a headache. I thought the pain was extremely similar to the pain I experienced when gall stones were passing through bile duct, i.e. severe, with difficulty breathing out because of what felt like a spasm of the diaphragm and pain going through to my back. Anyway the upshot was I ended up in casualty thinking it might be a heart attack (as gall stones were gone). After about 2 hours the pain eased off and I was eventually allowed home. They weren’t clear what they thought was happening but suggested it had something to do with the fact my gall bladder had been removed. Move on about 5 years and I took some painkiller with a small dose of codeine in with the same (although much shorter) result. So vowed never to take codeine again. Two years ago though I took some painkillers not knowing they had codeine in them and couldn’t understand why I had the familiar pain building up whilst I was shopping in Ikea and hour after taking them. (Luckily attack only lasted about 20 mins). When I got home I read the ingredients of the painkillers and found the culprit. I note it takes about 30 mins to 1 hour for the pain to commence after ingestion of codeine (and morphine – see below). I also have found that if I vomit I get a temporary relief of about 30 seconds to a 1 minute approx. I am wondering if the act of vomiting somehow relaxes the sphincter? I had several operations recently for another condition and I am fine on iv morphine. Unfortunately I was given oral morphine while having a dressing changed (which I thought would be okay) and had my worst ever attack. Unable to do anything to help me, I was left alone with the curtains drawn around my hospital bed. The pain was excruciating and frightening. I hope to never have another attack and am going to avoid all oral opiate type medication in the future. I will definitely try the milk. When I had my first attack with gall stones my GP gave me an injection of pethidine and I think this helped. Anyway, sorry about length of my post. I just wish that GP would take this seriously, he just poo-hoos it; says its probably heartburn! I’ve had four children and I agree with the earlier comment that it is more painful than childbirth.

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