Biliary Colic pain - but no gallbladder

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Just wondered if anyone has any thoughts - I have been having biliary colic pain, but when investigated it appears I don't have a gallbladder. I don't mean it has been removed, I mean I never had one in the first place. Docs are very confused. My LFTs are also pretty abnormal and I have jaundice. Most of the time I'm not in pain but have lots of pain when I eat, especially something with fat in, or larger portions (a large protion for me is now very very small.....). I have lost over 3stone in the last 3 months too (on purpose)....anyone else experienced anything similar

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16 Replies

  • Posted

    Hi, Sam,

    Sorry to learn you're going through this.  It's possible that your diseased gallbladder has fused to an adjacent organ. Has that been investigated?  What tests have you had, and are you seeing a gastroenterologist?

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    • Posted

      Hi Lynda, thanks for the reply. I have had an ultrasound, MRI and endoscopy. I just don't have a gallbladder at all..... it seems I was born without one. I have also had bloods done which have shown high bilirubin and ALT

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    • Posted

      Wow!  That's very unusual!  No wonder the docs don't know what to do.  That being said, it appears that your liver is stressed.  Have they said anything to you about fatty liver disease or cirrhosis?  Do they propose to biopsy your liver? (Not advocating, understand, just wondering.) Have they looked into pancreatic problems?

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    • Posted

      They have just said that they couldn't see anything that would explain it on the imaging (by the way I am in my 30s and don't drink)

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    • Posted

      Okay, well, I guess that you will have to try to take it easy (if you can) while they figure out what's going on.  I know that it's a terrible position to be in, facing the unknown, especially if the doctors aren't compassionate in their dealings with you; see you as "the missing organ" rather than a person.

      Don't let them fobb you off, and say, "we just don't know" and walk away because they can't figure it out.  Keep at them until they find out--or find someone who will.

      In the meantime, I suggest you avoid high fat meals, lots of sugars or artificial sweeteners.  See if you can lay off the ibruprofen or tylenol as those mess with your liver, too.

      Best of luck to you, and let me know how you get on!  

       

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    • Posted

      Thanks Lynda, they seem to be at a bit of a loss but determined to get to the bottom of it. I think they are hoping to get a published paper out of it......
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    • Posted

      Well I am no closer to a diagnosis after going again to the hospital today. My bilirubin is only slightly elevated but my ALT is 406 (was 220 a few weeks ago, reference range is 6-35). They are investigating me for autoimmune hepatitis and SOD........at a bit of a loss of what to do next
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    • Posted

      Oh, Sam, you must be at about the end of your rope!  I am wondering if they've considered a cyst or cysts in your liver....

      Have they mentioned the biopsy again?  Also, have they mentioned exploratory surgery?  Seems as though the tests can only do so much....

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  • Posted

    I think depending on what these bloods come back with (they took a lot!) then the next step is a biopsy. They are a bit confused as there was nothing of note on any of the imaging they have done, and most things you would see. Still the lady I saw yesterday was very very thorough I have confidence in her to get to the bottom of it. They have repeated ALT to see what the trend is, but I am also being tested for everything else going, I think there were about 20 requests on the blood forms. I am just really starting to feel tired and washed out now, I'm not really able to eat a lot. In terms of exporatory surgery, my original consultant wanted to go in and have a look to see what was going on with the gall bladder but the ALT results made him stop, he doesn't want to go digging around there as it were if there is something going on with my liver. I am seeing the new consultant again in 2 weeks so might have more news then

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    • Posted

      Well, they are being cautious and thorough at least!  Still, it's so difficult when you're ill and don't know what's going on!  

      Please try to take it easy while you're waiting to see the doctor!  And, let me know how you're doing!

       

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    • Posted

      Well my consultant rang yesterday to talk through the blood results, apparently my ALT is now 506, and ast is 527, bilirubin 49. So and doesn't want to delay and I had more bloods done today including clotting and I will be having a liver biopsy next week. I might be getting to a diagnosis finally but actually also getting scared as to what it might be

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    • Posted

      I understand.  Having a biopsy is scary as hell!  Just because they can't locate your gallbladder doesn't mean that you were born without one--people on this site have had their gallbladders fuse to their livers--but I hope that's not the case with you.  I'm thinking you might still have some sort of gallbladder, though, because some mechanism is still releasing bile.  You don't have a constant supply of bile do you?  If you did you would know, because you would have constant diarreha. But you haven't said that you do.

      Also, the liver is the only organ in the human body that's capable of regenerating itself.  So there is that thought, too.

      When's your biopsy scheduled?  I'll be thinking of you, and hoping that the dotctors make some headway in identifying what's going on!   

       

       

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  • Posted

    Hi  - well I had my biosy on Tuesday - it wasn't very pleasant but the pain passed quite quickly and after a few hours I was able to go home. I am seeing my consultant again on monday so hopefully the results will be back by then, but not sure if they will be yet. But big news, during the biopsy they found my gallbladder!! Its teeny tiny and the radiologist (who is the same guy that did my first ultrasound and my MRI) was shocked that its there, he says it must have completely collapsed during both those scans, and somehow reappeared. It is abnormally small, but its there - also, there did look to be a stone in there. So there is an explanation now for the billiary plain, which is great. Just need to wait for the results of the biopsy to see if there is an explanation there as to why my liver enzymes are quite so high

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    • Posted

      Hi Sam!

      Good to hear from you! It didn't make sense to me that you would have gallbladder problems without having a gallbladder!  I'll bet that its inability to function is why your liver enzymes are high.  Your liver is stressed! So, after this news, I'm hoping that your liver's okay.

      Please let me know how you get on!  Thanks for getting back to me!

       

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