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CFS/ME after cholecystectomy

Discussion in 'General ME/CFS Discussion' started by Ekaterina, Nov 30, 2015.

  1. Ekaterina

    Ekaterina

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    Hi, guys!

    I have now issues with my gallbladder (inflammation, pain), but no stones. I had problems since 2012, but now it got worse. Dr offers to remove it. But I have ME due to my gut problems and I'm scared my dysbiosis may get worse after removal. Have anybody had cholecystectomy? Can it worsen CFS/ME? Thanks!
     
  2. xrayspex

    xrayspex Senior Member

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    sorry to hear this

    I had that surgery--before it was minimally invasive, one of the last years they did it old school way in 89--and since then I have been partially disabled--but part of that, my rheumatologist thinks, is probably because I have cervical stenosis that was subclinical until they put my neck in hyperextended position for anesthesia during surgery--and after the surgery I was more worried about problems with my neck than how my gut was doing

    hmmm long story short tho---afterwards I figured out what I can eat and didn't have huge problems that way, digestive-wise....but the million dollar question for me since then is did the chronic fatigue and pain and malaise that came on post-surgery come from the surgery or from injury to neck (that was worsened by some choices I made after that to try to "fix" my neck) I don't know how much of my ongoing struggles since then are structurally related to spine issues or because of whatever effect the surgery had on my immune and other systems

    Before all that I was pretty hearty and bounced back from life's traumas....CFS and pain weren't on my radar, I did what I wanted.....altho was chemically sensitive but not as much as now

    surgery is risky with CFS type illnesses....but it really depends on the person
    Do research on safe anesthesia for CFS folks and if I were you, without stones, I would research what else you can do to feel better besides a surgery--it should be last resort imho
     
    Ekaterina likes this.
  3. Kati

    Kati Patient in training

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    Hi @Ekaterina, according to 'Osler's Web' gHilary johnson), 50% of patients with ME have galbladder disease and have it removed.

    i got sick at age 39 with known EBV infection, and had liver involvement from that, previously healthy, To make a short story, my Gb was removed 4 months later and it was necrotic. It was a difficult surgery because it was so inflammed and it had to be removed via open surgery instead of typical laparoscopic.

    My point is if you wait too long, not only you suffer more, but you have more chances of getting the more complicated surgery to get it removed.

    Dr Charles Lapp has a 2 pages long guidelines for anesthesia (google that)- also available on ressources pages here on PR.

    I did not have any diet problems after surgery and I am very thankful it is out, because gallbladder pain is horrible.

    Sending best wishes
     
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  4. xrayspex

    xrayspex Senior Member

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    @Kati--I remember reading that, I love Osler's Web,but its been a while since read it

    I think gallbladder problems tie in somehow obviously, with these sort of health issues.....but I do wish I could go back in time and try a different route....at that and this point in history removal of gb may be preferred way to deal with those symptoms....but my experience is there are repercussions to removal of one's organs....they also rec'd taking out my appendix while they were in there....just for safe keeping....I always regretted that too---and then years later they find it does have function in immune system
    and perhaps when medicine more advanced there will be better options than what there is now...some people do seem to get by with flushes etc
    Of course if gb is hopelessly diseased maybe removal only option....I don't think I was to that point....but guess can never know how would have played out if chosen different path....speculation....all i know is this one has not been easy......I have all the bloodwork on me right before and right after the surgery---everything was robust but after the surgery the numbers are all low....wbc etc I suspect traumas like surgery can put people who have risk factors over certain edges that they may not otherwise cross....but again nowadays there are safer ways to do surgeries so don't have to be as traumatic on body hopefully
    ie the anesthesia used was pretty heavy duty I think....and that can really hurt sensitive people
     
    Last edited: Nov 30, 2015
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  5. South

    South Senior Member

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    Seconding what xrayspex is saying. Including her comment that lots of people manage to keep their gallbladder by doing liver flushes, keeping their organs from being removed for many years, as she mentioned - I've met many people like that.

    Less difficult things to try than the flushes, certain herbs have been used historically in many countries around the world for gallbladder stagnation - I haven't tried myself, as I don't have this problem, but if you aren't aware of these herbs it may be worth reading about.
    For example: (not that this brand is any better than other brands, but just an example, with some reviews)
    http://www.amazon.com/Dr-Christophers-Original-Formulas-Capsules/product-reviews/B000N38PMO
     
    Last edited: Dec 1, 2015
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  6. Valentijn

    Valentijn Senior Member

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    Liver flushes are a scam. Please don't spread misinformation which might prevent people from getting the necessary medical assessment and treatment.
     
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  7. Ekaterina

    Ekaterina

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    In my country herbs for gallbladder are very popular. Even doctors prescribe them. I never used it cause I didn't have a need to treat my gallbladder, my diet helped me a lot. Now mb I will try it. I don't really want to remove it, cause I'm scared my ME can get worse. If I were a person without ME, mb could remove it. Besides I heard a lot of stories from people without gallbladder about difficulties they have after surgery (bad diarrhea, nausea, pain). So if it's still possible to keep it I will.
     
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  8. xrayspex

    xrayspex Senior Member

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    Ekaterina---I know how hard it is when you are at fork in the road and neither choice looks very good, I am there right now with a failed root canal--but thats another story :)

    I did feel like, back when this all happened, that I was to point where I had to do something, I was getting really bad attacks regularly after eating that were very painful, would put me down for the count, and I had never experienced something so debilitating before, however I was able to still work out at the gym every day and work full time etc but I felt I had to do something, I had even gone to Urgent Care/ER twice because it hurt so bad

    So maybe there was no choice and unfortunately then they were doing the full abdominal surgery plus rougher anesthesia....no other choices were discussed and I was obedient then and no internet to research and medical not my background
    And I was scared because Andy Warhol had died from complications supposedly from delaying gb surgery, but he had also been shot in the gut years before complicating it

    NOw I would most definitely get more opinions and change my diet! back then I was eating popcorn for meals and that would cause attacks and after the surgery I really cleaned up my diet---the 80s were bad influence with diet trends then
    Also back then a friend told me he had heard of a way to break up stones (in mainstream medicine) but I didnt look into that---but you don't have stones, which seems like good sign
    But could just be the curse of CFS making yr digestion not work well
    I wonder if acupuncture might help the pain for you? I got ovarian /uterine cysts right after the surgery, probably from scar tissue--and acupuncture and herbs dried them up--they did ultrasound pre and post acupuncture--I also had to quit drinking coffee and pepsi and those variables helped a lot and saved me another surgery or from having to take hormones which make me nUtS ;)
     
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