Intra hepatic calculi/Caroli's disease.

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i have just been diagnosed with intra hepatic calculi and possible Caroli's disease and been told I will have to have a segment of my liver removed because I am at high risk of bile duct cancer. Has anyone any similar experience?


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  • Posted

    Hi Gill

    I had open surgery to remove my gallbladder in February due to gallstones. Histology showed up a small growth and five weeks later I had a liver resection to remove any tissue that had been close to my gallbladder to prevent the cancer spreading. This involved removing section V of my liver.

    It sounds much worse than it actually was. I was on HDU for four days, then transferred to a ward for three days.

    Is there a particular aspect you want to know about?

    Five months on I'm doing well. Still tender on right hand side and I get tired easily but I feel better than I've done in years.

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    • Posted

      That is really helpful. My consultant (a prof) said he is going to remove section 3 by keyhole surgery. It will be a bit more complicated because I am insulin controlled diabetic which always makes things a bit more difficult, and also a wheelchair user. Your saying the length of time is very helpful as is the fact that you are feeling much better  - I am so looking forward to feeling better. Thank you
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    • Posted

      Just to let you know I saw Prof again on Monday and he is going to operate in the next 3-4 weeks to remove sections 1-3 of the liver hopefully by keyhole surgery but may have to revert to open surgery if there are complications which there might be because of my Carolis disease. In addition I have insulin controlled diabetes and am a wheelchair user because of polio. How long was it before you started feeling better from the op? In trhe middle of July I was in HDU for 3 days because of a complication with ERCP scan and felt so helpless so that is the one thing I am dreading.
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  • Posted

    Firstly, I've had two ERCPs and frankly I'd rather have surgery as I found them invasive and extremely unpleasant and uncomfortable. 

    My recovery was very gradual. Each day brought a small step towards feeling better.  I had surgery at the beginning of March and was certainly feeling better by the time I had my post op check up at the start of May, so a couple of months, but my only other health issue is slight asthma, so I'm lucky in that respect and, anyway, everyone is different in their recovery. I found that my appetite was poor. In hospital, I'd order food but when it came, I couldn't manage to eat more than a mouthful or two. It improved when I got home and had more control over what and when I ate. Light meals of plain foods were all I could manage for a week or two. I also found sleeping in bed uncomfortable so spent a lot of time sleeping off the anaesthetics in an armchair with my feet on a footstool. In bed, I found it most comfortable to keep my legs bent and use extra pillows and I found it painful to sleep on the right side. 

    Couldn't have managed the first couple of weeks without my husband as you can't lift so much as a kettle to make a cup of tea. Found it hard to concentrate for long, so books, TV and hobbies such as computing and knitting were no help and just too tiring. In fact I'd say the worst aspect has been the overwhelming tiredness and I still tire easily now. However I did have two open surgeries together and two large doses of anaesthetic so that may not be such an issue for you. 

    Just hold on your mind that you will feel better eventually. I was warned it could take a year to feel completely recovered.

    Good luck with your surgery x

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    • Posted

      Aaactually my ERCP was done under general anaesthetic as it was part of a national training session so I have no idea whether it was invasive and uncomfortable. However my duodenum got torn in the procedure which is why I ended up in HDU for 3 days which I hated because I felt so helpless. I was then transferred to a main ward but to a side room which I also hated because i felt so alone. I hope I have a much better experience with the operation. I am already very tired most of the time because I have post polio syndrome (similar to ME) so I really hope the op does not make the fatigue any worse!!
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