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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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  • gertychin
    gertychin cynthia89958

    Posted

    Hello Cynthia,

    I am having the same doubts as you re gb removal. I had a horrific attack of biliary colic last week and ended up in hospital for a few days. I was told (after MRCP) that I have an inflamed gallbladder, which contains multiple gallstones and I am now on the waiting list for gallbladder surgery. 

    For the first two days of my admission, it was nil by mouth and I was placed on a drip.  That stopped the symptoms completely.  The doctors said nil by mouth would rest my gallbladder and stop it contracting. It was the contractions causing the pain because of the multiple gallstones and inflammation. After that, they tried me on fluids eg. soup and that was ok.  Eventually, I was allowed low fat soft foods like mash potato and poached cod.  Since I was discharged a few days ago, I have maintained a no/low fat diet and have remained asymptomatic.  I was not even tempted on my birthday yesterday to eat any fatty foods or have a sip of wine.  Too risky!

    I don't totally fit the usual profile - fat, female and over 40 - ie. I am not overweight but other risk factors (female, middle-aged, sedentary) apply.

    I have now been galvanised into action -  carrying out extensive research and, late last night, stumbled across this: 

    EASL Clinical Practice Guidelines on the prevention, diagnosis

    and treatment of gallstones

    by the European Association for the Study of the Liver (EASL)

    http://www.easl.eu/medias/cpg/2016-04/EASL-CPG-Gallstones.pdf

    It tells you everything you want to know about gallstones and was published in April 2016.  The EASL website itself contains a mine of information.  At least, when we are talking with the doctors, we will be well informed.

    Although I don't want surgery, I don't think the alternatives mentioned in this article are offered on the NHS or maybe there is a general medical consensus that gb removal is the best? option.  I have been reading (in that same article) about complications that may occur during surgery eg bile duct injury but nobody knows who the unlucky ones will be.  The alternative is to risk gallbladder rupture or cancer etc.  I was lucky that I had just returned from a holiday abroad when I became ill. 

    What I would really like is for my gallstones to shrink or disappear entirely through diet and exercise; wishful thinking or not?

    Take care.  Let me know your thoughts on the article.  I am about halfway through with it.

    G.

    • lisa98146
      lisa98146 gertychin

      Posted

      Hi there, I don't know if it helps but I've had two separate consultant's tell me there is no other treatment available on the NHS. The second consultant I saw in a private hospital although he treats NHS as well. He is a leading expert in the liver and gallbladder. He told me categorically that diet, pills and other treatments are not effective "no matter what you've heard". He said that once gallstones become symptomatic, the gallbladder should go, especially if you've had cholecystitis. He said they have tried lasers and medications to dissolve stones in the past but they do not work, they have terrible side effects and the gallbladder is likely to make more stones. He said low fat diet can help prevent bilary colic in the short term but a very low fat diet can actually grow stones bigger. I'm no expert but Ive checked out what he's said and it's a common view. I don't believe they would remove the gallbladder if there was an effective alternative. It's one of the most common procedures. In the end it's up to the individual but the complications of gallstones that have already become symptomatic is a risk that should be carefully considered.
    • lisa98146
      lisa98146

      Posted

      Ps the consultant told me that the risk of common bile duct injury is about 1 in 1000. Have you looked at risk of pancreatitis if you leave your gallbladder as it is?
    • gertychin
      gertychin lisa98146

      Posted

      Of course common sense dictates that I should have the surgery and I am sure that this is what will happen. I am not going to risk the alternatives and I know deep down that I don't really have the luxury of exploring my options. All I can do for now is to focus on minimising the symptoms and to learn as much as I can about the op.  I can only pray that the surgery is successful and uneventful in terms of complications. I still have a few more weeks to get my head around it.

      Thanks for your concern.

  • cynthia89958
    cynthia89958

    Posted

    Some very good answers on here, thanks!

    I have not found any other solutions other than surgery but it is hard to take the leap of faith when there is no guarantee it will help and may cause new issues.

    Have read that a few people had really badly infected gbs when taken out, yet the scans did not evidence this so they could have been playing Russian roulette had they left them in, if only the scans could really tell us everything. As it is a relatively simple op in most cases I guess that is why they don't have any further tests but just get on with it. I'm having a less doubtful day - we will see what tomorrow brings! Take care all.

    • jill_38536
      jill_38536 cynthia89958

      Posted

      Hi Cynthia I still feel the same but will see surgeon next Monday and will ask loads of questions. I know the last time I saw him he suggested it was dangerous to leave them

      If you think of any questions let me know and I'll find out all I can and will let you know

      Are you on the waiting list? If so have you any idea how long it is. Take care

      .

    • lisa98146
      lisa98146 jill_38536

      Posted

      I'm on the list and have waited 7 months. Typical I joined the list on the onset of winter. It's not an unusually long wait though, judging by what others have said here. Bearing in mind nhs England referal to treatment times is 18 weeks. That was up mid Feb for me.
    • cynthia89958
      cynthia89958 jill_38536

      Posted

      First saw consultant Dec 15, scans/ tests etc, then saw surgeon 2nd Feb - went on list, pre op that week. Op would have been April, cancelled due to Drs strikes. New date in early June. I went on the list despite doubts as even the surgeon said it is best due to the wait, he said if you feel better you can cancel, otherwise I would have seen him again until Sept 2016 and at the time I was so unwell that seemed an eternity. I was almost unable to eat then and losing weight and have not eaten a real meal since last Nov. I live on bland carbs and compplan and it has really taken its toll.

      Yes, I think what anyone in similar situation is what happens if we try to live with a dysfunctional gb. We know there are risks of complications, as there are with surgery, mostly deemed to be low risks. But, the more serious things aside, can we have good health and wellbeing with a gb full of stones or other dysfunction? If the gb is not up to capacity, is it as though we are already living without one and what if it is infected as some folk have been told when theirs came out despite no prior signs.

      I wished I had thought to ask the surgeon what he would have done if he were in the patient's chair with my symptoms, but I was so unwell at the time, not sleeping or eating, I forgot almost everything!

      Hope yr appt goes well for you and you get the answers you need x

    • jill_38536
      jill_38536 cynthia89958

      Posted

      Hey Cynthia like I said I saw the surgeon to discuss the options as I was having doubts like you

      Well I asked what he would do if he was me and he said if I was only having the symptoms once every 6 months he would leave it but as I have them every day he would have them out

      He told me about all the complications that could happen but with all of them there's only 1% of getting them

      Hope this helps

    • cynthia89958
      cynthia89958 jill_38536

      Posted

      Thanks for that Jill, it is helpful. Are u going ahead now?

      My op date has been cancelled by hospital a second time so I have even more time to think it through as no new date yet. Take care,C

    • lynda20916
      lynda20916 cynthia89958

      Posted

      Hi, Cynthia.  Sorry to learn your op date has been cancelled, but, as you said, you have more time to think it through now. If I had been told my op date had to be cancelled or postponed, I think I would have gone mad!
    • jill_38536
      jill_38536 cynthia89958

      Posted

      Hi Cynthia yes I did say I would go ahead because if not I would have had to start from the beginning all over again. To be honest I still have doubts but I think it's only natural. I will let you know when I get a date. Sorry to hear your date was cancelled. Take care

    • cynthia89958
      cynthia89958 lynda20916

      Posted

      Yes, it is really hard to cope with two cancellations and no new date. I know I had doubts but this indecision on their part is not helpful! I guess everything is for a reason though. It means life stays on hold as no plans can be made. Hey ho!!
    • cynthia89958
      cynthia89958 jill_38536

      Posted

      You are right, the surgeon did say if unsure to go on list due to the waiting time. Good luck and keep updated wink
    • lynda20916
      lynda20916 cynthia89958

      Posted

      Well, do let us know when you get a new date!  In the meantime, take care!
    • jill_38536
      jill_38536 cynthia89958

      Posted

      Hi Cynthia sorry your op date has been cancelled. I've made my mind up today I'm definitely going ahead. I've been in pain all day and it's made my mind up for me. I haven't got a date yet but will let you know as soon as I hear. Do let me know when you hear

      Hope you don't have to wait much longer.

    • cynthia89958
      cynthia89958 jill_38536

      Posted

      Hi Jill, Glad to hear you have been able to come to a dicision. No, I have not heard back from the hospital but am going to chase them up Monday. I went to the GP nurse as I have been having some muscle aches and spasms (possibly due to poor eating for 6 months) - she did a blood test and I go back to see GP and also keeping a BP chart for the week as my BP has shot up as well. Seems like one thing after the other. The nurse advised me to chase for a date. Last cancellation took 3 weeks to send new date which was a month later.

      Yes, stay in touch as it will be interesting to compare how we get on. Take care for now.

    • lisa98146
      lisa98146 cynthia89958

      Posted

      I would definitely chase it up Cynthia. I was under the impression that hospitals were only allowed to cancel a certain number of times. You'd have to check that. I have to say that the NHS constitution means very little though. Despite what the government say about patients legal rights, there are no real penalties. I complained and went as far as the ombudsman. The ombudsman asked me what I hoped to achieve and I said that the NHS constitution is meant to be enshrined in law. If I break the law, I'm expected to be punished. The constitution is toothless and I'm challenging that. To me it's not good enough to be told to accept it either because there are people worse off than me - it's not a race to the bottom, or they lack resources. They should either follow the law or lobby the government change it. The only way things will change is if people challenge it and get what the law says you are entitled to but many people are afraid of complaining or don't feel they should. So they get away with it. I'm still waiting for the hospital to apologise properly but I won't give up. Not just because I want to be a pain, but so that the next person waiting just may get treated better than I was. I do know that the CCG ordered the hospital to immediately start treating people who had waited the longest to clear the backlog. So one good thing came out of complaining though it didn't actually help me. The CCG didn't know the full extent of the hospitals waiting times and were shocked at what I'd been told. They really should have known! It's ultimately their responsibility!
    • cynthia89958
      cynthia89958 lisa98146

      Posted

      Hi, I understand where you are coming from, you want to help others void the same situation - I have done this in the past, taken on some issues as I felt it important for someone to speak up. Where illness is concerned many people are not able to fend for themselves. We just want fair treatment. There is the 18 weeks rule but I see that does not mean much in some cases, they can seem to be more interested in those just coming up to the deadline than ones who have already breached it, as in my case where as the first cancellation was due to strikes I guess they may be let off due to that. They only have to give you a new date within 28 days if cancelled for non clinical reasons within 24 hours of surgery it seems. I have heard of ppl having 5 cancellations and others being cancelled as they sit all prepped for theatre - that must be awful having to go through all the nil by mouth and pre op anxiety to have to start again. Although it is often for reasons beyond control. I don't know why though that some ppl like me seem to have several delays and cancellations while many have none! It has not helped my own anxiety at all. Maybe they have put me as low priority as there are those with more severe attacks while apart from a few past A & E visits I have more chronic pain all the time - they are not interested in that I have not been able to eat proper food since last year and live on soups and nutritional drinks, as my weight has has stopped falling now and I'm not underweight as I make myself have 2 hourly top ups. I've been to complementary therapists and a nutrition consultant but they only helped a little as I cannot eat most of the things they advise anyway.

      I did go to PALS earlier about the wait for scan results etc but they never got back to me and I got my results though the A & E doctor so I let it drop. I will be following things up now though as it is not really fair to keep patients waiting so long for a new date - you cannot plan work, family, outings or holiday committments and on bad days, just feel abandoned and even a new date seems to mean nothing as they cancel so readily. This experience has been a real eye opener!

      Of course we are lucky to have the NHS but we do pay into it, we are stakeholders and it concerns life and health so we all deserve equal and fair treatment, as you say.

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