I am a 40 year old female and have had several "attacks" that have sent me to the ER in horrific RUQ pain radiating to my right shoulder blade, bloating, diarrhea and nausea. My first attack was in August of 2007. I had broken my back in a traumatic horseback accident in March of 2007. I had Kyphoplasty on T12 in April '07 followed by shoulder surgery in July '07 to repair a tear as well as remove bone spurs and decompress the joint. Three weeks after that surgery I was in the ER with my first attack. With each attack I am immediately put on intravenous pain meds and nausea medication, both of which help tremendously! My blood work shows elevated pancreatic enzymes that return to normal after an overnight hospital stay, nothing by mouth and intravenous fluids. While having these attacks I have had abdominal ultrasounds which come back normal. I have followed up with a gastroenterologist who ordered MRCP, CT, HIDA Scan and abdominal ultrasound, all of which have come back normal so my gastroenterologist said to come back when something changes clinically! Irritating man!
In between attacks I struggle with diarrhea ranging from watery stool to fairly loose and then back to nearly normal. At times my bowel movements become very light and clay colored or they will be yellowish and foul smelling. These changes happen in hours and OTC anti diarrhea medications do nothing so I have trying them. Also, the pain between my shoulder blades has become persistant now as has the nausea. Eating anything only causes the nausea and bloating to increase. I take nausea medication nearly every day.
I need some advice. I know I am on the verge of another attack. I can feel it coming on and I really would rather not go through it again. I have not had an ERCP yet and for some reason my Gastro doc did not order one. I would hate to go through another invasive test only to have it come back normal.
No, you're not losing your mind. But you need to find someone who has knowledge of sphincter of Oddi dysfunction (SOD), and that person may be difficult to locate. Try the largest teaching hospital around. You don't want just 'anyone' trained in the procedure to do it. An ERCP should probably be done but ONLY if it is done with manometry, and the doc is experienced in the procedure. Many docs will automatically perform a sphincterotomy while doing and ERCP and if your pressures are not elevated, that procedure should not be done.
In the meantime, although I know it's of little consolation, please make sure you're following a very low fat diet.
If you're having clay colored stools it's a clear indication that you're having spasms of the SO, and something needs to be done. Find a darned decent doc and get some better information than what you're now getting. You should also talk to the doc you've currently got (unfortunately) about using some form of antispasm meds to try to control the issue until you can do something about it. There are some meds like bentyl/dicyclomine and others that might help. There are also some calcium channel blockers that might help - although they'll really impact your BP. Nitroglycerin could also be tried.
Thanks for your post. I talked with my Gastro doc specifically about SOD and he said that he didn't suspect it as a problem because there is no eveidence of common bile duct dilation. I felt that I needed to be tested but he disagreed and that was the end of that. It is so hard to get in to see a Gastroenterologist here (appointments are months out) so I am more disappointed than ever. I know I need to get another appointment but it all feels like a waste of time if my concerns fall on deaf ears.
As for SOD testing, if the worst of my symptoms are during an acute episode, would it show up on ERCP with manometry even if I am not having symptoms at the time? I just cannot imagine why all of my tests are coming back normal. You would think one of my radiology studies would show something a little abnormal.
Low fat diet is not a problem. I cannot tolerate fats at all or much of anything else for that matter. It's usually good old Jello for me these days unless I feel like being totally miserable.
Your doc needs to do some updating. Dilation of the CBD can take some time, and it doesn't have to be present for SOD to be rampant. People can suffer from SOD immediately after GB surgery, or years later. And even if the condition rears it's ugly head years later dilation does not not always accompany the condition.
The problem with SOD is that it doesn't have to be present ever single minute, which is good because of the horrific symptoms, but it's also bad because of the problems in trying to diagnose it. However, with a 'normal' pressure of about 40, even a small rise above that upon manomenty would suggest something is going on, and a small rise may not cause 'every minute' symptoms. But it takes a very skilled GI person whol really specializes in SOD and the biliary system to understand all the small nuances of the problem.
Did you get all the written results and look through them? Too often a patient is told one thing (usually you're normal) when that may not be quite the full story. My constant refrain is to get the written results of all of your tests and make sure you read through them. I know that can present problems with some docs - it appears to be an ego issue - but it's one way of making sure that nothing is 'left out.' You also need to get any pathology records that were produced. Tell any of the docs you want them for your own records, but get your hands on them.
The problem with SOD is that it's currently 'only' being uncovered after the GB has gone bye-bye. But docs are starting to understand that it is an underlying problem -at least the good ones are. It's resulting in fewer GB's being taken out quite as rapidly if only a slightly lower ejection fraction is found. However, there can be a real problem in interpretation of the results of tests. Some doc will tell patients their EF's are normal when the levels are at 76%.............now that doesn't seem 'normal' to a lot of people. What it does suggest is that that person's GB may be having some 'interesting' problems. In other cases, people can have an EF of 10 or less with no pain what-so-ever.
Are you sure no sludge was seen? Did you actually see the report of the u/s? How many of those reports did you actually see?
Oh, and if you're on hormones, see if you can drop them. In addition, look and review any and all meds that you may be on. Many drugs can can an impact on the GB and docs forget to mention it. For example, narcotic meds can increase the pressures within the common bile duct and sphincter and make the pain that is felt much worse.
The only hormones that I take are thyroid hormones and dropping them is not an option if I wish to stay above ground. I think that doctors wait until everything else has been looked at before they start on the more rare of possibilities. My case would be even more rare in that I still have my gallbladder so it's even easier to dismiss the possibility of SOD.
I have seen the radiology reports on everything but the hida scan because it was just done last week and I haven't picked up the report yet. As for the ultrasounds, all comments as to the gallbladder were normal. The only finding was splenomegaly. Yeah, I kind of saw that as a red flag but the only doctor sitting up and taking notice is my GP. I'm sure she is going to send me to another doctor. She is pretty fired up about this as well.
After the Gastro doc told me that SOD wasn't a possibility because there wasn't any dilation of the common bile duct, I went over my research again. While common bile duct dilation occurs with papillary stenosis, it is not common with sod dyskinesia. So tell me this, how do you school a doctor who is sure they know it all?
Unfortunately, you can't school most docs unless you're a friend or a colleague. The only way to approach the problem is to change docs which is a total pain and time-consuming when trying to find someone good. But there are centers that specialize in conditions such as SOD and other biliary problems. You may have to try to seek out one of those facilities even if it's not near your home. From the way you've relayed the information I believe you have fully researched what may be happening and probably know some of the more unpleasant outcomes. I know that can be very expensive, but you may be dealing with a situation that, if it escalates, could completely change your life - and not for the better.
The hormones I meant, which I should have spelled out, are anything along the line of BC pills or HRT.
Thanks so much for all your input. I haven't felt very well the last few days and haven't been able to do much of anything. I did, however, manage to find a center that specializes in SOD diagnosis and treatment. I'm going to my primary care doc tomorrow to talk to her and get a referral to the center. I am determined to get a definitive diagnosis before this ends up destroying my gallbladder, pancreas and my liver unnecessarily. The more posts I read, the more I realize how lucky I am to have found all the information that I have in order to get me going in the right direction. My symptoms are just coming up on a year old. I'm just a baby compared to most of these people that post here. It seems like the majority of them went for 5 years at least to get diagnosed and treated. I just want to feel "normal" again! Is that too much to ask?
With my recent escalation of symptoms, I know that another trip to the ER is closing in on me. I am just hoping that I can get diagnosed and treated before that happens.
Thanks again for all you information. If you know of any really informative websites regarding SOD, please let me know.
you might want an abdominal exray done sounds like your gallbladder is bad I was having the same problem had mine removed feel alot better still have diaherra and nausea but not as bad and no more left shoulder blade hurting
No, unfortunately all tests show that my gallbladder is fine and functioning well. I have had x-rays, ultrasounds, ct's, MRI's, MRCP, and HIDA scans that have all said the same thing....."normal". It is very frustrating and annoying, not to mention painful, to not be able to get a diagnosis and be treated. I am being referred to another doctor in hopes that a change in audience will send my treatment into another direction.
Thanks for the comment and I am glad that your symptoms responded well to your course of treatment.
Just a quick note to say hi and give you an update since you have been such a great source of information and support for me. I was admitted to the hospital in early October for a severe attack of pancreatitis. Usually my bloodwork would return to normal after 24 hours but this time it took about a week. During this attack they were able to do a CT with contrast and another HIDA scan. The CT was normal but the HIDA scan showed a significant change in my ejection fraction. I was sent to a surgeon who agreed that removing my gallbladder was a reasonable step to take. I was admitted for surgery on November 25th with a planned overnight stay. Surgery went well and after the pain was under control in post op I felt much better. However, hours later I started having pain over my liver and just below my sternum. The pain quickly escalated to the point of uncontrollable screaming that lasted for 2 hours as they injected pain meds and did a STAT CT and HIDA scan. The tests showed a bile leak. I was sent to the ICU for pain management and went back to surgery for an ERCP the following day. The procedure could not be completed due to severe swelling and was repeated on Friday the 28th. They were able to insert a stent from my liver to my duodenum to drain the bile and allow the leak to heal. I was released from the hospital on 12/2 and will return on 12/29 for another ERCP to remove the stent. I am still on pain medication every 4 hours. Every time I try to stretch the time between doses the pain level gets too high and is then too difficult to get under control. Anyway, I am hoping for a complete recovery after the stent is removed but the question of SOD still looms over me. I guess time will tell. Thanks for all you help and support. I hope all is well with you and that you have a very happy holiday season.
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