Biliary Dyskinesia or Something Else??

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I have had on and off pain in my upper right quadrant, 30-60 minutes after I eat, starting moderate and graduating to brutal, with nausea. These flares happen randomly, sometimes every three weeks, sometimes every 6-8 weeks. When they happen they are so bad I have considered going to the emergency room on multiple occasions. However, last year I saw a GI doc who spent about 25 second listening to me and quickly concluded it was IBS. I read online and I have no symptoms of IBS. I had a CT of the abodomen 1.5 weeks following one of the attacks and it showed nothing. I wondered if this was because the attack had passed and I wasn't in a symptomatic phase. It has happened now 6 times in the past 12 months, the last three being severe. The attacks sideline me completely. They are debilitating and wake me from a sound sleep. I followed up with my doctor who ordered an abdomen ultrasound. Again nothing showed up. Friday I am due to have a HIDA scan. I just recovered from my last flare. It was about 5 days - intermittent throughout each day with most of the severe pain late afternoon throughout the night. No  amount of pain medicine, acid reducing medicine etc. helps. I tried heat and ice. Nothing. My fear is that on Friday I won't be in a flare stage so I won't have any symptoms. I know the HIDA scan is supposed to mimmick symptoms but that's not the same as whatever originally starts a flare up. I would appreciate any thoughts anyone might have on what this could be, what you think the HIDA scan can detect when not in a flare up. Anything. I can't keep going throught this. Thank you.

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  • Posted

    Have you been told you have gallstones. 

    Your symptoms sound the same of what I have been through.

    But please note if gallstone related then the pattern for me I think it overheating, sleeping on a full stomach or eating with fizzy pop... Fizzy pop was in all of the cases. 

    As things have gone worse due to more attacks the pain, spasms, cramps are more frequent. But in the early days you symptoms sound like what people could describe as a dodgy stomach or blame IBS. 

    My my doctor thought I had IBS, he was totally wrong, it was gallstones.

    the thing with gallstones, it depends on yeah size, some pass quicker than others so pain maybe discomfort or severe which stops you in your tracks, then you are left with the soreness which you notice when taking in deep breaths. 

    I hope this helps to identify your problems. 

    Ajay

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  • Posted

    I feel sorry for you because this was what i went through. Have you had an ultrasound on the gallbladder? I didn't get to the HIDA Scan so I dont know much about how that works. My ultrasound was scheduled first and showed multiple polyps in my gallbladder, not stones. My symptoms were much like yours. So bad that I became too afraid to eat. I would eat only non fat non fried foods such as vegetables and soft foods like applesauce, toast, crackers. And I only drank water. For 6 months. The pains became less horrible. However I still would get reminders that something was not right in there and that was miserable enough.

    I am day 4 post surgery and doing much better. I did not want the surgery but I am so glad I did it. I hope you get answers soon!! And relief!

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    • Posted

      I just had HIDA scan a couple weeks ago. The first watch to see how long it takes toe the gallbladder to fill with nuclear stuff that they inject into you. Then the rest of the test is to watch the ejection fraction / function of the gallbladder. I was told anything above 33% is normal. I have also seen some literature say anything above 35% is normal. I also had a ultrasound of my gallbladder which showed no stones sludge or wall thickening. My HIDA scan revealed that my gallbladder is only functioning at 19%. I have awful nausea which is pretty severe if I eat fats. If I stay away from fats it's still there but not nearly as bad.

      Hope this helps. Hoping you get some answers!

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    • Posted

      Thanks, heatherc. That sounds similar to the discomfort I have but I also have the severe pain along with the nausea. It doesn't seem always correlated to food I eat but maybe certain foods precipitate it or make it worse.

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  • Posted

    These were more or less my symptoms exactly. The difference being that I had spent 2-3 years thinking it was IBS. I was woken with the upper right quad pain which left me delusional with pain. Luckily my doctor recognised gallstones even though I was non symptomatic when I saw him (benefit of not being a frequent visitor so he knew I was not joking). Gallstones confirmed by scan, gallbladder removed following week. Massive relief and improvement in pain. I have been left with some tummy pain due to bile male absorption but this is miniscule in comparison. Get your gallbladder scanned. Hope this helps.
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    • Posted

      Thanks Tosh. I did have an ultrasound and it showed no gall stones. But that week I wasn't having an attack. Not sure if the two are related. Maybe the HIDA scan will finally show what it is I am suffering from.

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  • Posted

    Hi

    I feel your pain. I have been sick 1 year now and progress is disgustingly slow on nhs with all the budget cuts.

    I have moderate to severe pain in my upper right quadrant. when i press with my fingers under my right ribs about 4inches from centre i get pain too. The pain was intermittant in the beginning. Every few weeks i had an attack. Now its constant but with varying degrees of severity and nausea. Ive been in accident and emergency 16 times in 7 months. Sometimes pain is so severe in my back i think im having a heart attack, its so awful.

    I initially had ultrasound to look for gallstones and nothing was found. I then had gastroectomy to check for peptic ulcer and again stomach was healthy. Then CT scan and nothing shown, i cant have mri due to metal fragments in my eyes. I then had the HIDA scan and have waited a month for a letter to say gallbladder is within normal ranges, no appointment with doctor and been told to go back to my go and start again. I could cry with frustration and pain. My bloods are all normal range apart from elevated ALT. it was as high as 125 but is around 70 now, still higher than normal.

    surgeon refuses to take my gallbladder out but no one is prepared to look further or do exploratory surgery. ERCP is another last resort procedure that i am going to ask for. im convinced i have gallbladder disease but my pathologist friend suggessted sphincter of oddi dysfunction.

    When you know you are sick but all the test come back normal it makes you feel like you are going crazy and people think you are making it up, its so depressing not having a professional diagnosis and treatment plan.

    I am taking codeine phosphate 30mg 3x daily with paracetamol. This helped initially and actually settled the nausea but now it doesnt do much at all.

    Prwvious to being sick i was a professional fighter and very active. Very fit and healthy. Now im almost house bound as im afraid an attack will happen when i leave the house.

    I really hope you get some answers after the HIDA scan.

    Good luck.

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    • Posted

      OMG that sounds horrendous. Poor you, I can only sympathise. Once I had my gallbladder removed I then realised I had been suffering for 4 years with symptoms that I explained away and managed by over the counter remedies, as you are. Obviously things escalated to a point where my doctor had to take action but it took 4 years to get there!! It is so bad that it takes that length of time and suffering. I cannot offer any advice other than trying a different GPS? Perhaps 'be visiting a friend' when you have an episode and get an emergency GP appointment in another borough/town?

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  • Posted

    Hello Laura,

    First, what is your age? Your gender is correct for this type of problems.

    Second, how stressed are you, or have been and for how long? You do sound anxious (justly so), concerned,worried, and you "fear" you would not have symptoms at the time of test - it is enough to confirm (?chronic) and serious level of stress. That may be one of the triggers or contributing factors.

    Third,you have had tests, which should establish, if you have gall stones, or at least sludge (maybe microcrystalline sand), whether the wall of your gallbladder is 3-4 mm or thicker (ultrasound), and you do not seem to have an acute inflammation or even outright (bacterial) infection of the bladder. That should have been enough to guide the mind of your treating GP towards biliary dyskinesia, which are problems with the drainage of the gallbladder at the sphincter of Odi where it joins the duodenum).

    There is one important fact you mentioned ;"no amount of pain medicine, acid reducing medicine etc, helps. I tried heat and ice.Nothing."(end quote). This may be of great significance, because in the sphincter of the gallbladder itself (the ampula of Vater) as well as in the sphincter of Odi there are tiny circular muscles which are supposed to sqeeze in sequence to push small amount of bile into duodenum. And in stressed persons, or at least in response to the right triggers (like a very quickly eaten large amount of cold meal) those muscles can go out of synch and in my case not even 60 mg of Buscopan orally would set them right.

    I ended up in the teaching!) hospital. for a week, all possible kind of test which you also had, all negative. Final Dg was "biliary dyskinesia". That was more that 25 years ago, and I have managed reasonably well with low fat diet, watery food (soups,with fat skimmed off), boiled, steamed poached - in short hospital grade of muck they call in there "food".  Needless to say that to nibble, small amount as you go, low spices, all that jazz. 

    Four, being a female, I wonder if your thyroid is OK, because hypothyroidism can also trigger spasms of bladder in dyskinesia.

    There are some herbal remedies, perhaps dandelion tea seems to be the safest, to help your bladder to get rid of the bile, perhaps curcumin, too.

    There are some symptoms, at your body level, for which  you can watch, like elevated temperature (say 37.2 - 37.8 d.Celcius, but not quite regular fever above 38.0), a sudden drip from one nostril (usually right) of very thin mucus, not much though, a "runny" nose and suddenly feeling a bit "shivery", some headache, nor much, also RS of you head, and pain shooting up into or right under your right shoulder blade.

    Look it up on the internet (respectable medical sites only!!!) under "chronic biliary dyskinesia" and check yourself and you symptoms, also keep the food  diary to find is there is a pattern in your attacks re food you eat.

    Also, feel yourself around the right kink in your colon, because trapped gas in there can be extremely painful mimicking a gall bladder spasm.

    Last, but the most important is to try to relax,because just the fear that you might get an attack can actually give you one. There are some calming exercises, like sitting or lying down, and breathing in with your diaphragm to the count of 1,2  then holding breath to the count of 1,2, exhaling with your diaphragm (pushing the belly in) over 1,2, holding 1,2, etc. 

    This is perhaps a bit too lomg, but wrote it (with 2 fingers) as I know what it is like where your best friend standing next to you can only try to immagine the pain and frustration you feel. I wish you speedy resolution of you problems. Cheers, Alan. 

     

     

     

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