I want to post this for anyone that has this incredibly frustrating problem.
My wife daily pain attacks, all in the upper-right quadrant. They lasted between 5 minutes and an hour, and could be incredibly severe. She had already had her gall bladder removed.
After substantial effort and MANY gastroenterologists, including one at the Mayo Clinic, we were able to come up with a solution - it is biliary microlithiasis. Essentially, small calcifications in the bile that flow through the common bile duct from the liver get stuck at the Sphincter of Oddi (where the bile duct enters the duodenum).
Imagine a grating where water is flowing through, but small rocks and pebbles are flowing also. Normally, these rocks and pebbles can pass through the grating, but if enough of them come at once, they can stop the water flow.
When this 'sludge' or these calcifications build up behind the Sphincter of Oddi, this causes pressure, and the pressure causes pain. Eventually the pressure pushes the calcifications through, which relieves the pressure.
Essentially you're feeling a gall bladder attack without the gall bladder.
And every GI doctor we went to thought the problem was IBS or nerve pain or just in her head. Incredible. But there is a medication that can make it go away!
We've found the drug Ursodiol to be a godsend. Ursodiol dissolves the calcifications as they pass through the bile duct. It's relatively inexpensive, we haven't noticed any side-effects. And it's like turning on or off a light bulb. If she's not on it - pain attacks extremely frequently. If she's on it, it's about 99% effective in removing the attacks altogether.
Please ask your doctor about this, if you have these symptoms. Try it for a month, and see if the symptoms just go away completely. We are amazed how well it works!
Try eating a strict low fat diet. Get cholesterol checked.
I had an attack last night at 4am, had taken 'day Nurse' for a cold. Since I had my gallbladder removed last year I've had similar pain that is over and done with within half an hour. Its usually after eating citrus (Dont know if any of you have had that! Symptoms:
-pain like gall bladder pain in upper right Q of abdomen
-high temp
-Vomiting of mainly bile
I haven't been to the GP yet, as its only happened 6 times in a year but I will go. Sounds similiar to sphincter of Oddi but I'm better attempting to get a proper diagnosis. Be interested to hear similar stories.
Hi there Michelle so how do you cope with the pain and what analgesia are you taking??? surely this must be taking over your whole life??? lin
I have had eight ERCP's since Jan of 08. I now have to have my stent changed every 3 months. My GB was removed in 97. I was fine (or thought I was) until Jan of 08. Dr. nicked my duct, and years later....pain.....I feel it all the time.
Hi Michelle, I too had my GB removed last July and to this day am still experiencing RUQP and sharp shoulder blade pain, the worse pain of all is the spasm pain at the end of the sternum as if in the solar plexis, OMG its so painful I cant breath and no position eliviates the pain, the spasm have to wear off which ususally is after anything from a couple of minutes to 15 minutes, then quite often they come in waves of three at a time. After,the nausea and dry retching is really bad and that can last for a few days. I now have a supply of Buscopan which is an anti-spasmodic drug for when these attacks occur (usually every 5-6 weeks). I was very unfortunate to have my last attack right on xmas day morning, around 09.30. My kids were there with the meds but I was in so much pain I had to wait for the spasm to finish before I could take them. By the 27th was so dehydrated and in a lot of pain I ended up in hopsital for the following 8 days. This week the 18th Jan I ended up back in for another 4 days for pain control and constipation, ( from the amounts of morphine used to control the pain). It has totally taken over my life too, knowing that I if I over indulge or have a glass of wine too many I will suffer later on. I was quite fortunate that my GI specialist mentioned this Biliary
Dyskenesia from only the second lot of attacks but have only just started on some meds to control the spasms one being Diltiazem which is a Calcium Channel Blocker normally used for high blood pressure, and the other is Ursodeoxycholic Acid this is used to try and disolve GB stone or Biliary Sludge. No other procedures have been offered as of yet, but I will ask about the MRCP during my next consultation with the doctor. During the xmas attack he did mention the possibility of the ERCP but the partner refused because of the high risk of Pancreatitis and suggested the meds first.
I have not yet been told I have had pancreatitis when these attacks flare -up Im pretty sure I would know about them as they are very painful. But I do worry if the attacks will lead to it (does anyone have an answer)? Although it does only seem to be my ALT that is elevated when the pain strikes and not any of the pancreatic emzymes.
I have notice of late how much this SODD is taking over my life, even though it has not yet been confirmed this is what my GI Doc thinks it is, the past two days after discharged form the hospital I feel great, no pain ATM thats why!!! I am going to start a liver cleansing diet on Monday as a pro-active way of controlling my symptoms. I have spent the past week reasearching this and It appears I have nothing to loose. If it means stopping the meds I currently take 4 different types to control this dysfunction ATM then Im willing to try anything. good luck with your decision :-)
I to am in your position. My doc suggested an ERCP but said in my condition that it could be deadly if they can't get the pancretitis stopped so I opted for the medication which he gave me hyomax and netriptoline. Which only helped for about one week and now my pain and vomitting is coming back. I to have had a MRCP, catscan, mri, eus, berium swallow, colonoscopy, pipita scan, gastric emptying, had gall bladder removed, all test showed nothing and still I have bad attacks that bring me to my knees. But most of the time (almost 100%) the attacks come after I have eaten something. If I don't eat I rarely have an attack. Hope you have found out something since Feb.
I did have that wrong. I have had an MCRP which was an MRI with some dye in the IV and ect...that took about 2 hours to complete. They did not see anything concerning with that except that incidental cyst on my left kidney. Do you happen to know if the pressure is always consistent or does it go in spurts? Are the pain attacks because of the pressure in the duct?
My doctor informed me that I would have a very good chance of getting pancreatitis from the ERCP with manometry.
An MRCP is not an ERCP with manometry. It is a completly non-invasive test that visualizes the biliary tract to see if any stones, sludge or abnormailites are present. Most docs would do the MRCP first to see if anything can be seen. Then if nothing is located, or if an obstruction is present and the pain continues, and ERCP with manometry would be the next step.
If your doc does suggest the ERCP with manometry, make sure that the sphincter is ONLY CUT if the pressures exceed 40. Under no circumstances should that muscle be cut, unless they're completely unable to get into the duct - and if that happens it SHOULD mean that the sphincter is so tight that the pressures are raised.
The ERCP does not automatically mean pancreatitis if you are stented afterward - talk to the doc about it. Either that or discuss botox.