GB removal & Oddi & Bile duct issues after the op

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Hi all,

I posted originally as my daughter she 20 has had GB removed 26/1/17. But suffering severe pain increasing all the time. You all wrote back which helped us get pushing for referral to a specialist in London.

Well that happened on Thursday & he confirmed it does look like Oddi Disfunction & issues with the bile ducts.

They took lots of bloods and she goes in Monday for the MRI ERCP scan.

Her pain is now daily & really is on the increase, she has lost a lot of weight, if she manages any small amount of food it comes back out very quickly, then it's just bile, ranges between yellow & green & the pain starts dead centre of her chest most of the time, the around where the GB was, then a band around the full centrycore right around her back, often into her shoulder blades, her legs are often as if they don't belong to her especially when she is woken up in the night with it.

Pain relief is not working now unless it's in A&E by iv.

The specialist has said the scan will lead the way forward and she is clearly suffering horrendous amyof pain with no quality of life right now so everything is as an emergency for the tests, slight complications due to her linx implant so full checks & authorities had to agree the scan due to the magnetic implant, but that was all done Friday ready for Monday.

So when the specialist is back from holiday in 2 weeks he will have all the results waityfor him & decision time.

He advised there are injections called botulinum toxin specially to stop the spasms & this can sometimes stave off the episodes for 5/8 months, but again you don't know until tried.

If she can't have that and the scan shows she needs the op then he will do that.

Hoping not but either way, while your body is playing up, diet is vital to help yourself ease the pain, won't stop it but can ease it a bit.

I wanted to let you all know where she is at, as you have been amazing with your support and helpful tips.

Will keep you posted wishing you all well and speedy recoveries, let's not forget SOD is not the normal pathway just the unlucky few. But hopefully the details will help others think if they need to push for more information about what's going on with them if pain is increasing.

And it might not be that yet, but I will confirm either way asap.

Xx

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11 Replies

  • Posted

    Sorry your daughter is still having such a bad time. No-one deserves that and it must be so heartbreaking for you having to see her suffering this way. At least things are no moving forward and some potential solutions appearing. Fingers crossed they will be the answer. I will keep you both in my thoughts and prayers x
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    • Posted

      Thank you Cynthia, it's incredibly difficult, worse part is you always think after the GB removal that's it she will be better & that's what I said to her after all the rest this will be it you will be fixed, then bang all this & we just didn't expect it.

      But yes things happening fast now so hopysome answers & definitive way forward for her hopefully soon.

      Thank you so much xx

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  • Posted

    Hi Carol

    I've just noticed this about your daughter, I have read about using botox to help with the spasms so its useful to know that they do look at that option here in the UK.

    Please keep us posted and we're thinking about her xx

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    • Posted

      I will for sure, I think we should know more as soon as he is back so hopefully in the week of the 20th March .

      I will share as soon as we know hopefully it all helps others.

      Sleep well xx

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  • Posted

    Hi Carol,

    Thank you for letting us know how your daughter and you got on with the specialist!  

    Too bad that more waiting is involved--my heart goes out to both of you!  I know that you want the correct solution, and not the quick solution, but she has been in so much pain for so very long!

    Please know that I am praying for both of you!  Please continue to let all of us know how things progress!!

    XXXX (((BIG HUGS))) to both of you!  

    Lynda

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    • Posted

      Thank you Lynda,

      She is in the worse place now and her head is very low, she still can't see a fix as it should of been ok after every procedure but just keeps getting worse for her instead of better.

      This is the side many petdont understand about severe pain it destroys strong people not only physically but mentally, so it's hard to pick her up out of it right now, incredibly sad.

      Praying myself with you that the specialist can help her through this now.

      Thank you so much xxx

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    • Posted

      You are welcome!  I'm sure that there are lots of others who are praying for her!

      I hope that the test goes well, and that she is able to find some relief while you wait for the specialist.  xxx

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  • Posted

    That was nice to know glag to hear the update about your daughter.

    i had mine out with bike duct. Had no complications. I am so sorry to hear of your daughters complications. Sounds like your getting answers soon. 

    Prayers sent cent your way!

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    • Posted

      Thank you for your thoughts & prayers.

      I'm so pleased yours has gone so well for you, it's good for others to know that it's not always bad.

      She has been up all night crying so her body is broken & her mind is feeling helpless as she has just lost hope .

      Trying to keep her positive is an impossible task as she just can't see it at all.

      Hoping Mondays MRI ERCP will boost her up a bit more and can't wait for the consultant to get back in 2 weeks.

      Thank you for your thoughts xxx

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  • Posted

    What it sounds like is that she may have a bile leak and that can be the reason for her  pain.  Hopefully the ERCP and a sphincterotomy/Bile duct stent will solve the issue.  The sad thing is that it is taking the specialist awhile to get this done.  My prayers are with you and your daughter.  I've had my GB removed 3 weeks ago. Last week I had ERCP and stent placed.  My pain symptoms are gone but now have intermittent indigestion.  My mother has called me everyday to see how I am doing and given me support.  Again my prayers are with you an your daughter.

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    • Posted

      Oh bless you so you have & still are suffering also.

      She finds the peppermint tea really helps with her indigestion & smaller discomforts wind building in the chest.

      I'm hoping they might just give us a small clue tomorrow at the scan but I know some won't say anything, so then it is 2 weeks until he is back from holiday.

      I've read a bit about some people having the same as you & managing well after.

      I just need her to get a bit of a break 4 years in total has taken it toll and this weekend has seen her hit rock bottom sadly. So I can't wait to get her to the hospital tomorrow.

      I will keep you posted.

      Thank you again it feels like your on your own and then I found all of you suffering and it just made me realise you honestly can't imagine how much one bit of your body going bad can cause so much pain for so many people & she isn't alone.

      Wishing you well xx

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