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Doubts about removing gallbladder

Posted , 16 users are following.

cynthia89958
cynthia89958

 It is 6 months since I became really unwell and everything has so far been ruled out other than gallstones, hiatal hernia and a small diverticulum found on scans and scopes. Everything else has been found as normal although I have constant nausea, bloating, stomach ache and cannot eat many foods. I often get sharp upper left sided pain (nothing found to explain) and tight mid chest pains, likewise. I feel like I have bad flu, aching all over, headaches every day, too many symptoms to list. I'm back on the list after hospital cancelled first date to have Gb out as Drs all say it is the only cause that could be behind all this so it is a case of eliminating it, also maybe I could have some form of IBS (which I doubt as bowels have not really been a problem). The only abnormalities on blood tests are low vit D (taking it now) and some slightly raised liver enzymes but they say those are nothing to worry about and could be due lots of things. Reading of all the things that can go wrong after Gb surgery, I'm worried that this op will not solve the problems since I don't have the major attacks ppl talk about with right side pain, more constant chronic pain all across middle and twinges in different places, worse after eating. I don't want to risk any more issues as I am worn out already. It seems that post op complications are quite common (I know more ppl post who have issues than those who are OK) but medical research papers found up to 40% get some form of after probs which seems quite high. And there is no real improvement in GI symptoms for many of these, mainly the reduction of severe attacks, although some folk on here still say they have same pain after.

On the other hand, I've got known multiple stones (no size mentioned) and the scan said contracted Gb which I take to mean scarred and I am over 60 so if a stone moved in future it could be more risky to have emergency treatment and op then, than elective surgery while younger. But the risk is supposed to be low. My Mum is in late 80s and has had stones for years - she does also get some digestive issues but not attacks.

If I had typical attacks I would have no doubt, but as my symptoms vary, I just wonder. I've seen a couple of doctors now, one who said it is up to me the other thinks it is the way forward. But they do not seem to be willing to look into anything else until the Gb is out and ruled out. I keep changing my mind as to whether this is a good idea. I've tried remedies (not flushes as don't agree with those) and diet and complementary therapies, they help symptoms a bit but the underlying condition is still there and life is on hold. Has anyone any thoughts?

1 like, 108 replies

108 Replies

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  • carol38455
    carol38455 cynthia89958

    Posted

    Hi Cynthia,

    I'm so sorry to read that your operation has been put back yet again.  I, like you, have been agonising over the decision to have surgery as i too am not experiencing what Doctors refer to as 'classic gallbladder symptoms'.  I know that the stress involved in that decision is enough on its own without having the added 'massive' stress of having your operation date continually changed.  I really feel for you... I would most definately complain as that is totally unacceptable. 

    As for your friend who had her operation cancelled... who had her operation cancelled right at the last minute.... OMG... that just doesn't bear thinking about does it?? 

    Lisa, I'm so glad to hear that you're making a good recovery.

     

    • cynthia89958
      cynthia89958 carol38455

      Posted

      Thanks Carol. If only there were more reliable tests so we could pinpoint the exact cause of our problems! Not a lot to ask in a world of technology - no doubt not enough financial reward.

      I do wonder if we have non classic symptoms as we have a chronic form of the disease which often exists with other conditions maybe related or coincidental, but which blur the picture for diagnosis as they all mimic one another?

      Drs are only looking for the textbook symptoms of acute gb. Everyone seems to have very diverse symptoms anyway from reading on here, but the similarities are there as well. Hope it works out for us - keep posted and take care.

  • cynthia89958
    cynthia89958

    Posted

    Managed to speak to someone today - seems that staffing is the problem they keep cancelling and nothing can be done about it. The new date does not come with any guarantees either. And I won't get another pre -op unless the date bumps to August. So they will go on how I was at the beginning of Feb it seems. I am considering what to do next.....

    Hope everyone is OK out there.

    • lisa98146
      lisa98146 cynthia89958

      Posted

      It's no excuse, Cynthia. Seriously, email your local clinical commissioning group and ask them what they are going to do about it. Ultimately, it is their responsibility as they commission services for the hospitals. Try and find out if your surgeons are commissioned from private hospitals. It's likely tbh and it could mean the CCG are not commissioning enough hours for theatre to keep up with demand. This is exactly what happened to me. Though I didn't have a fixed date, they gave me estimates all the time until it got to a point where they held their hands up and said they could no longer estimate how much longer I'd have to wait. If only they had been honest from the start and I could have been treated much quicker elsewhere. The CCG can help, it's their duty. Even if you have to be treated elsewhere. Keep your chin up Cynthia. I am thinking of you x
    • lynda20916
      lynda20916 cynthia89958

      Posted

      Hi, Cynthia!  This is outrageous!  I feel for you so deeply!  You're going through a nightmare!  Please consider doing what Lisa suggested!  Please let us know what you decide to do and how you get on!  xxx
  • cynthia89958
    cynthia89958

    Posted

    Thanks for all your support folks, it make such a difference having the value of everyone's wisdom and experience.

    I'm trying to make the additional waiting time more positive for me by working on my wellbeing and I've booked a second opinion privately, using what is left of money from redundancy as I cannot book the much needed holiday I had hoped for anyway now, not knowing when I'd be able to go.

    I'm realistic that they may not tell me anything I do not already know, but it is just to settle my mind and instil more confidence as I find I have very little left! If that is the case it will be worthwhile.

    I am also following up as has been suggested with local pals and commissioning, mainly so it may help others in the future as I can't get back the months I've been waiting in limbo.

    Anyway I'll post updates, hope not to be too boring as it so easy when illness takes over your life, but I love hearing how everyone gets on, especially how we overcome these horrid health glitches. Take care for now x

    • E11eth
      E11eth cynthia89958

      Posted

      Hi Cynthia

      Pals were fantastic with me, I contacted them on the Monday and had my surgery on the Saturday. Fingers crossed you get some answers soon xx

    • lisa98146
      lisa98146 cynthia89958

      Posted

      Well today is the first chance I've had to have a proper day out and I feel great. I've just had a lovely caramel clotted cream ice cream and I'm fine. It's been two weeks and I feel great and practically back to normal.
    • lynda20916
      lynda20916 lisa98146

      Posted

      Hi, Lisa!  Thanks for the update.  So glad to learn that you're doing so well, please don't forget us and keep contributing to the site!  XXX
    • lisa98146
      lisa98146 lynda20916

      Posted

      I won't be going anywhere for a while. I know what it's like to go through it and this forum was really a lifesaver for me. People's experiences do help others. It's not often you read about positive experiences on the net because people who do well, don't seek out forums. So it's good to have a balance. 15 days post op and the discomfort right side is almost gone completely now. Wounds haven't healed completely yet but they aren't sore. I seem to be able to eat what I like. That's good enough for me!
    • lynda20916
      lynda20916 cynthia89958

      Posted

      Hi, Cynthia, please do let us know how you're doing.  It won't be boring to hear from you--because we care about you, and what happens to you!  Best of luck! xxx
  • carol38455
    carol38455 cynthia89958

    Posted

    Hi Cynthia, How are you doing?  I was interested to read that you are going to get a second opinion privately as this is something i've been thinking of doing.  I've been driving myself mad after reading all the posts on this forum about complications etc. and am so worried that having this op will not actually solve the problem (or will give me more problems).  i actually wish that i was having the regular, terrible attacks of pain since at least then there would be nothing to consider - just a simple case of counting down until surgery.  Just lately, like you, I've been getting pain on the left side - usually like a sharp, horrible 'spasm-like' pain that just lasts seconds and I've also been getting low grade pains in the centre that often last for quite a while. (I have also been diagnosed with 'multiple stones' - usually if they don't mention a size it's because they are actually too small to measure, just very 'tiny' ones).

     The only thing that put me off making an appointment to see someone else was that i thought they would simply say "you've got gallstones so that will most likely be what is causing the problem".  I don't believe any doctor will actually say that the gallstones are 'definately' what is causing the problem, most likely, the most they will say is that 'we'll remove the gallbladder in the hope that it may alleviate the symptoms'.

    When i saw the surgeon i was worried as to whether my symptoms were actually caused by the gallstones since I'm aware that many people can have gallstones and be asymptomatic.  I said i was concerned that an ulcer hadn't been ruled out so he reluctantly referred me for an endoscopy.  i have to say that i didn't have it done though since i then thought that the symptoms i had did seem more likely to be gallbladder pain rather than ulcer, no burning pain or sickness - also I was absolutely terrified of having the tube down my throat.  When i read your post i do wonder whether i should have had it done since you do seem to have had other procedures carried out whereas I only had an ultrasound done and then was sent 'directly' for surgery.else, just told that if gallstones are found on an ultrasound, that's it!   Anyway, after rambling on, what i was going to say was,  after getting a second opinion, would you please let me now if you thought it was worthwhile or is it the case that one doctor says pretty much the same as another - it might help me to decide whether to 'go for it'.  Best of luck with it.

    • cynthia89958
      cynthia89958 carol38455

      Posted

      Hi Carol, Yes I will update on Tues after the appt. Like you, I would not question if I had the classic full blown gallstone attacks (not that I want that level of pain), although I would still be nervous of surgery and possible after effects, I would know at least that there was a 100% indication for surgery. Just having these doubts makes it very difficult and as the surgery being cancelled several times has not helped and I'm stuck with daily symptoms that are impacting life quite badly. They told me they would look into any other causes, such as IBS, if gb removal did not improve things, but that would mean starting more tests and appointments afresh with all the time that entails when they only found g/stones and hernia the first time around and I believe there's no cure as such if all this was "IBS" anyway. So that would mean having to live with all this - which is awful.

      If the private surgeon backs up the gb removal as the best action - as you say, this may well be the case - I will at least know for certain there was nothing else could be done and it will be worth the cost just for the reassurance.

      Have you had any tests/ blood tests ruling out your pancreas as a source of pain - this was why I had the other tests also to rule out stomach ulcers etc? An endoscopy is not very pleasant but it did help to know it was not stomach and the CT scan was not too bad and gave some reassurance, so worth it as well. Will let you know how I get on, take care for now.

       

  • cynthia89958
    cynthia89958

    Posted

    Hi to all following this discussion, hope you are OK.

    I've had my second opinion consultation and yes, the surgeon reassured me that the Gb needs to come out as it has stones and is contracted, ie diseased and he was as confident as anyone can be - we all know the possible pitfalls and no guarantees etc - so I can either go with my new NHS date here in July, or transfer under NHS to the other hospital, but it will mean going to the end of the queue again (however they say it would be unlikely to be cancelled as per my current hospital), or go private and have it  asap.

    So that is where I now am and although I've never really wanted surgery I'm feeling better about it anyway.

    • lynda20916
      lynda20916 cynthia89958

      Posted

      Hi, Cynthia!  I'm glad to learn you had a good consultation with the surgeon, and that he seconded the previous opinion!  Now you know that having the surgery would be the best course for you.  That's something! I'm also facing surgery for another problem and I know that it's not an easy thing to opt for, as I'm not having lots of problems now, but if I don't have the surgery it could be much worse in the future... I hope that this confirmation does make things easier.  Please let us know what you decide to do.  We're all pulling for you! xxx
    • lisa98146
      lisa98146 cynthia89958

      Posted

      I'm glad you had a second opinion, Cynthia. That's one thing out of the way. I really feel for you still going through this. I'm almost three weeks done and last night in bed it suddenly dawned on my I don't have that heaviness and gargling in my stomach anymore. It's such a relief, honestly it is, after years of feeling unwell, i didnt know how it felt to feel normal, but i do now. Its amazing. I really hope that you get your operation soon and you can start recovering and feel normal again too. You will get there. I hope they hurry up!!
    • lisa15321
      lisa15321 cynthia89958

      Posted

      Hi Cynthia I had my op done privately and it was brilliant so glad I didnt wait ant longer I dont think I would have been able to cope with the pain any longer and because my duct was blocked with a large stone , I dont know if it could have managed the wait list for NHS , that made my mind up for me . Dont know if you have to pay but the op was not as expensive as I thought it came to about 1500 and that was the consultant fees included , but the aftercare was unbelievable . I had been waiting three months and hadnt even had a scan when youre in as much pain as we are its a long time Good Luck x
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