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Have you been living with GB stone for a long, long time? How are you?!

Posted , 13 users are following.

Yanavel
Yanavel

Dear forum members,

I've been having a 23 mm stone at the outlet of my GB for 3 years now, and first I thought I could cope with it by sitting on a low fat diet, drinking herbal teas (quebra pedra) etc., but lately the pain flare ups have increased in frequency from less than once a month to every 3 days and I've decided to go for an operation on GB removal, which is planned within the next couple of months.

But I am still hesitant for several reasons:

1. Carelessness of the doctors - the impression is that they don't want to know anything about your problem (no MRI, no ultrasound - nothing) just cut your GB out.

2. After-effects - infection, hernia*), damage to other organs.

3. I think that if it's possible to live without operation - it's best not to have it.

So to cut the long story short - I wonder if there are people on this forum or your friends who have been living with GB stones for a really long time (like 10 years or more) and if you have - how do you cope?

Thank you very much for any feedback

*) I was told by the pre-op consulting doctor that 10% of patient after open operation have hernia

1 like, 34 replies

34 Replies

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  • rachel_1971
    rachel_1971 Yanavel

    Posted

    Hi I have had GB pain since my early 20s ( am now 44) . Three years ago scans found hundreds of stones and sludge so was referred for GB removal . Decided to wait and see and not have the op as you are considoring . 3 years down the line only 1 episode of pain and being as careful as possible with diet .... Sadly to no avail - in December I developed out of the blue severe pain - admitted to hospital - morphene - sent home - pain persisted for he next three days - couldn't eat or drink - back to doctors who arranged for blood tests in a weeks time - day after - eyes yellow and urine like coca cola and severe pain 24/7 . Admitted to hospital with severly enlarged inflamed GB and acute cholecystitis ( stone blocking bile duct to liver ) slowly poisoning me ! The stone had migrated and stuck ! IV antibiotics and a stay in hospital for a week . I was left for a month still in pain whilst waiting for an ERCP ( camera down throat to remove stone ) 2 days before this procedure the stone shifted itself but the GB was still enlarged and malfunctioning . Leaving it in situ is not an option when they are diseased . 4 months after this episode and 3 stone weight loss I finally had my gall bladder removed (UK waiting lists) . I am feeling relief and am pain free apart from bloating and some discomfort with certain foods - I cannot eat green leafy vegetables - too hard to digest or mashed potato !

    I had the gall bladder removal by laparoscopy . 4 teeny neat scars . No infection and no hernia because it's least invasive . I was informed that once the gall bladder is diseased it will not heal itself and I think whatever you do, you have gone past the point of no return and it has to be removed as complications far worse than gall bladder pain arise . It isn't worth waiting around for that .

    I now eat a low fat healthy diet and hope to remain well . my decision to have the GB surgery was left till I had no option and it became a medical emergency . I believe diseased gall bladders are a time bomb waiting to happen . I hope this helps

    • harrington40
      harrington40 rachel_1971

      Posted

       I had similar symptoms like you mentioned coco urine , inflame etc except mine was in a chronic state. I had my GB removed on 18 of may and is a good feeling my health is up. I'm not sure why people would want to keep this GB for long... if your reading this and are having problem .... don't keep it removed it !
    • Yanavel
      Yanavel rachel_1971

      Posted

      Hi Rachel,

      thanks very much for this story, very learningful for me and I hope for others who are in the same boat. I will go for the GB removal op most certainly.

    • Yanavel
      Yanavel harrington40

      Posted

      thanks harrington, will do soon hopefully and update the thread on how I feel afterwards.  Thank you for all your contributions.
  • gerryc
    gerryc Yanavel

    Posted

    Based on my experience...............as a last resort go for surgery. You need to know that Sphimcter of Oddi Dysfunction may be an out come so read all the material on this very rare condition. 

    Insist on another opinion but from an expert who is not rushing you into surgery. 

    Good luck.

    • Yanavel
      Yanavel gerryc

      Posted

      Hi Gerryc,

      I realise there many possible undesirbale outomes as with any operation, but equally there are a lot of people who benefited from it (including many in the thread). No one really rushes me into the surgery. It's gonna be my own decision.

    • gerryc
      gerryc Yanavel

      Posted

      I agree with you...........proceed with the benefit of information from others. Best of luck with the surgery and keep us informed.

      Regards

  • Yanavel
    Yanavel

    Posted

    Hi all,

    Finally have had the cholecystectomy (GB removed) last Friday. The operation was laparoscpic but lasted 2+ hours: acute cholecistytis + pigeon egg size gallstone - so done just on time.

    Feel very weak, exhausted, pain in the right half of the belly, shallow hard breathing (painfull to expand the diaphragm) - but very glad that all is behind.

    Will keep you updated on how the recovery goes.

     

    • Yanavel
      Yanavel

      Posted

      Hi everybody,

      quick update:

      Today is the 5th day post-op and I am recovering pretty well - pain reduced a lot, only bothering me 1-2 times per 24 hours (mostly at night). I try to minismise pain killers intake, as the doctor said that most of them (especially paracetamol based) damage your liver, so I only take pain killers (1 pill of solpadol at a time)  when it's really really necessary.

      Still weak and sleepy, but it's getting better every day. Can even bend slowly and lift my right leg a bit, which I couldn't do a couple days ago.

      There are still some problems, which I'll share with you cos some of you might have similar.

      BREATHING

      I still feel short of breath often, like diaphragm resists expansion, especially if trying to lie flat on my back. The first occasion of that, quite severe, was on the 1st day post-op when my wife was driving me back from hospital (which is in Birmingham, and we live in Nottingham). On that day we went to emergency in Nottingham, they took some tests (ECG, chest X-ray and blood) and all was fine but blood test showed greatly increased LFT - liver function damage. The doctor at emergency said this could be due to anastetics, so she made me repeat blood test the next day (2nd day post-op) and it was slighty better. She gave me referral for yet another blood test at my local surgery, which I had yesterday (4th day) and the results were sent back to the emergency doctor. Don't know them yet, but hope they are even better. At least I feel much better.

      Returing to the short breath - they couldn't find a reason for that, just said could be post-op complication - that's all.

      SLEEPING

      Can only sleep on my back and only in a chair (with 2 foot cubes next to it to put my legs on).

      If I try to turn on my left (unaffected) side - it feels like organs from the right side are "dropping down", as if they are suspended on thin threads and not supported enough - ackward feeling.

      Lieing on the right side is also uncomfortable plus sometimes triggers pain, so I keep on sleeping on the back and with my head raised upright.

      The rest is fine and I ma really pleased with the speed of my recovery.

      I wish you all well!

      Will keep updating you

      Anton

    • michelle_34992
      michelle_34992 Yanavel

      Posted

      Thank you for updating with your recovery, it is always helpful to read other peoples experiences.

      How is your breathing and sleeping now? I hope it's improving.

    • Yanavel
      Yanavel michelle_34992

      Posted

      Sorry for delay. I feel very well now - breathing problem self-cured, constant pain has gone after ~10-12 days.  Today is 19th day post-op and all that's left is some skin irritation when clothes rubbing against the wounds, which are still healing (covered in crust but hurt when I apply iodine to them).
  • kathrine41964
    kathrine41964 Yanavel

    Posted

    Hi! Just removed my GB 2 months ago and until now i'm experiencing pain attacks,bile problems, and avoiding foods that causes diarrhea. I'm vegan. Completely no meat and dairies.

    I always have my lunchbox with me so whenever i go out with friends or with my mom. I always have my own food. Which you can't find outside.

    No Oil, No Dairies, No Caffeines, No spicy foods.

    I tried to eat mild spicy soup (which i loved super hot spicy foods.) but my tastebuds changed , with one sip of that milds spicy soup burns my throat and mouth.

    I'm avoiding carrying heavy things also,i was told by my dietician also that no sports for me for 2 years. Just to make sure i'm completely recovered.

    This is my feedback for now.

    Regards,

    Katherine

    xxx

    • Yanavel
      Yanavel kathrine41964

      Posted

      Sorry to hear that kathrine41964. Hope it will improve with time and you'll be able to eat other foods without consequences.

      As far as I am concerned, I started to eat some cheese, peanuts and chocolate in small amounts (which I didn't eat before GB removal at all) and so far so good.

    • Yanavel
      Yanavel

      Posted

      generally recovery so far goes pretty well - much faster and more effective than I expected: no pain, no tiredness etc. All is left are healing wounds with rsut around them but hopefully these will scar in a few weeks.
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