Doubts about removing gallbladder

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 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?

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  • Posted

    Hi, Cynthia,

    Sorry to learn you're having so much trouble. In my case, I did not have typical attacks, but I still felt very ill prior to my surgery.  I am wondering if you have considered how ill you might become in the future if you choose to keep your gallbladder? The tests have revealed that your gallbladder is diseased.  A diseased gallbladder can rupture or become cancerous.  I am one of the individuals that has experienced problems after my gallbladder was removed, but those are manageable. To me, it was better to be rid of a diseased organ than it was to prolong my illness by trying to retain it.  Best of luck, and please let us know how you get on!  

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    • Posted

      Hi Linda, Thank you for your reply. What you say makes good sense I know. It is easy to let fear creep up on us and there are all these stories of folk who regret their op, but like you say, if they had kept their gb, likely they would have still been unwell, possibly worse. In the USA I think gb surgery gets a worse press as there is money involved, where here in the UK there is not that factor, which is great, the downside being the long wait for treatment which again instils fear as if you put off surgery, you may go to the back of the list again. I read from someone who did this and now another 18 months of still having attacks. Then you have the other campus, where they try to convince us we can save our Gb with this or that cure or diet but in reality they may work for some but if like me eating most things is difficult, diet is not the answer, I've always eaten healthily anyway. It has just got me confused, I think with the surgeon saying it was up to me! I'd rather he had been more definite to give me confidence. The GI consultant was more definite but even so, no-one really seemed bothered that I was struggling to eat, once they saw my weight was stable - but living on complan, potato and crackers is hardly normal life! Anyway I will let you know how things go, thanks for hearing me out, friends and family are caring, but they don't get the dilemma, they just say follow the Drs advice, but its not easy for me as I worked in health research adn NHS hospitals and I cannot help questioning. Glad you are managing your after symptoms, I guess it takes time to adjust to a missing organ, take care x
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    • Posted

      Hi, Cynthia, I agree it's difficult when the doctors don't consider all of your symptoms.  Before I got my gallbladder out I was existing on bread, rice, apple sauce and bananas.  Drinking gatorade, water and tea.  I could have lean beef, chicken and eggs, if I only ate a small amount. If not, I spent lots of time in the bathroom. I lost 40 pounds! Please do let me know how you do, and take heart!  I am in the US, but I was sick for a long time before I found a surgeon willing to take my gallbladder out!  I wasn't in sufficient pain, you see, and they wanted me to be in agony before they'd consider it. So---I lied.  When my gallbladder was removed it was full of sludge and stones, but if I'd waited till I was as sick as they wanted me to be, I'd have been very ill indeed.  Best of luck to you!   
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    • Posted

      OMG goodness... I am havin a really hard time trying to justify these doctors that u and Cynthia have described. Not to mention the horrible pain issues

      i have a similar story.I was only 19 when my severe symptoms began. At 26 the gb was finally found to have a stone imbedded in the bile duct. Had gb surgery and the horrible debilitating pain was gone. It does take time to adjust to eating foods after surgery. I was down to 100# before surgery. That was 40 years ago. I guess some things never change. I was told by Drs everything from the pain is all in my head to go read a self help book. I have enjoyed living without the pain and it has not ever been a problem for me not having a gb. My gastrointerologist told me once the body starts to make stones it's recurrent and can cause issues with other areas of the digestive trac .

      Cinthia I hope you can resolve this issue with ur gb soon. It will be something to look foreward to & live & move on w/o all the pain and disruption that this illness creates. Take care and hope u see a doc you can find comfort & trust. 

      Take care.

       

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    • Posted

      Thanks hope, it is good your outcome is positive and at the same time awful to have had gb troubles at such a young age.

      I think it must be that still little is really known of gastro conditions, they can deal with the obvs technical side that can be seen, but symptoms that can only be felt by the patient tend to be common to lots of things so they are working on a process of elimination mainly. This is what the consultant said basically, with no other evidence, we can  only assume it is Gb.

      I do agree a gb full of stones and maybe scarred is not good sitting there in our body and I know stones may be a forerunner of very rare gb cancers and similar or other complications in the future. No-one seems to know for sure what would happen if just left. However my symptoms are limiting my life a lot so I guess I may have to accept the gamble as there is nothing else on offer.

      It must have been awful to be told you were imagining your pain! Thanks for yr kind response and I hope you continue well.

       

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    • Posted

      hi Cynthia

      I realy feel for you and all the other poor people having so many problems.

      It is a really tricky one and I can understand you being confused about what decision to make.

      I first became ill nov 2013 with severe pains and thought i was having a heart attack.I went to hospital and they didnt know what was wrong.I then saw my gp and explained what had happened,she knew straight away it was gall stones,went for an ultra sound and sure enough it showed up as being full of stones!My gp advised me not to have it taken out as I hadnt had many attacks and also she thought i was too young ( I was 38!)

      anyway to cut a long story short i should of decided to have it taken out as the following june i had a really bad attack and ended up in hospital for 2 weeks.I had developed pancreatis as a stone had got drapped in the duct and my gall bladder was very angry to say the least.The dr said straight away i need to have it out but only until i was better and after the GB had calmed down.I felt really ill and went through alot so I wish I had it taken out earlier.you really dont know whats going to happen if you leave it as the stones could move about at anytime.

      Just recently I have started to have pains again and its being investigated,It could be sludge from the old stones or a new one as iv been told they come back.This is not good news,plus im very scared to get pancreatis again,but I still think it was the best decision to have my gall bladder taken out.Its not good to be worrying about what could happen if you leave it.But like alot of people on here have experienced problems after wards.You still have to be very careful with your diet,one dr said i could eat what I like after the operation but thats rubbish,and I knew from research that you need to be careful.

      Good luck with everything and I do hope to get better soon.Reading peoples experiences on this site has been really helpful.

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    • Posted

      It took 8 yrs before the 10th dr found the gallstones. By that time the pain had crippled me. The X-ray showed one of the stones was logged in the bile duct. I was happy to see the cause in the X-ray and very glad to have the gb removed. 

      It takes the body time to adjust after surgery & a good diet was recommended. I had my life back and could take care of my young children.

      Praying for this common disease to be recognized earlier before complications begin. 

      Reading all your experiences and advice is very helpful for those just going thru gb disease and facing surgery. 

      Many blessing to you all. 

       

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  • Posted

    I have your very same symptoms Cynthia, even after having my gallbladder out. I had the same apprehension you do, but everyone told me I would feel so much better after it was gone. Well, I'm not, still sick with nausea daily, muscle pain and weakness, Gerd, constipation.....blah, blah, blah. I never received much information or help making a decision, just was told you have gallstones and this is why you are sick. My pain was never on my right side, everything has been left sided, so I should have known better. On the other hand, they stated I had a stone the size of a half dollar, so I guess, at some point, it would have gave me problems. I am just disappointed how the whole thing played out, and am stuck now trying to eliminate all the other reasons I am still sick. Just do your research, and make the best decision you can. That's all we can do. Good luck. 
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    • Posted

      Thanks for replying, Debbie. Your story is exactly why I have doubts. I know there are others for whom it worked as well and it seems that as marvellous as modern medicine is, this is an area when they basically just do not know and it boils down to guesswork. The research I have looked at simply seems to have monitored people post op for new symptoms or still having same but it does not really answer as to what is the casue of any of these. There does not seem to have been much study of what happens IF we keep our dodgy gallbladder, they only pick up on stats if ppl present as emergencies later, but what happens to others - do they go on to live with their symptoms, present with other illnesses or what?

      In yr case you know now that the Gb was not the main cause. Are they continuing investigations and any closer to a cause? It is soul destroying to be in these situations. I know only I can decide my own path, it is not easy as ppl are worried if I suggest I am questioning doctors. They know a lot of technical stuff, but don't live with our pain and problems and they no doubt see ppl who much worse off with life threatening illness. They implied to me I'm fortunate as the scans did not find cancer etc and I am grateful for that of course.

      Some of our symptoms are like those of Hiatus hernia but while I have this as well, the Drs here say it should not cause these issues, just reflux at worst. However on HH forums ppl do have these symptoms.

      Wish you the best, Debbie and hope we get answers. I will update in case anyone watches this thread and is in similar situation. Take care.

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  • Posted

    Hi Cynthia I'm pleased I read your post as I am exactly the same as you. Can't make my mind up as to have the op or not.. I am seeing the surgeon next week to discuss this. Must admit though that everyone I know that's had the gallbladder removed said it's the best thing they've had done and had no problems after at all. It's only seeing how some people are suffering has made me think twice. probably make my mind up next week. Will see how long the waiting list is. But as you say if you say no I suppose we have to start all over again. I know when I last saw the surgeon he warned about pancreatus which can be very serious

    Good luck with making your mind up.

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  • Posted

    Hi Cynthia Im 46 and had my gallbladder removed in Jan this year have had a few of the symptoms after op ,Tiredness , pain under my ribs and cant tollerate fatty or greasy foods. my bile duct had become blocked and Id had a scan a week before and there had been no blockage then .I was lucky to have private medical insurance and was seen by a consultant in Dec and was shocked to learn that I had become so Ill so quickly the pain was unbearable but it had been such a gradual process I must have been suffering for years and didnt really know .I must say that I have always dieted and this can be result of the old yoyo dieting , I would urge you to think about the long term as although I suffer if I had carried on ignoring the pain this may have been life threatening, a change in diet for me was definately needed , I am looking forward to my future and hope these are only short term complications . Hope you feel better soon
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    • Posted

      Thanks Lisa, Hope u do too. They do say recovery may be months for some - poss depends how u were before I think. Had stones 10 yrs so they are not going  on their own. Most of us are guilty of dieting  and some risk factors. Don't want to get pancreas probs etc. Take care..
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    • Posted

      Hi Cynthia, I'm a yo-yo dieter as well but I've been 'lucky' to suffer almost text book symptoms and do not have many doubts about the surgery. I feel for you I really do. I should imagine it's the fear or going through surgery and the symptoms do not go away and you are left with doctors scratching their heads while you continue to suffer. :-(

      There are risks with any surgery and it's not a decision to be taken lightly. It will have been a 7 month wait. Up until now I was just focused on getting my gallbladder out but as the day draws closer, other fears are creeping in. Mostly the possibility of long term effects and complications. I think everyone hopes to be one of the lucky ones who are cured by GB removal but there are those who are not or develop complications. But I cast my mind back to October when I was in the worst pain in my life and spent 9 days in hospital. Living with a gallbladder full of stones that have already gone bad is a big risk. It's like a ticking time bomb and all the niggles every day, remind me of that. Good luck Cynthia. I'm sorry I'm not much help. X

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    • Posted

      Hi Lisa I was the same as you although mine was a bit of a whirlwind  from results to op  My concerns healthwise had only ever been that I may get cancer at some stage in my life as my mother and grandmother both died quite young from it , It never crossed my mind that something else crops up. I do have bad days like today when I feel sorry for myself due to the complications after op (which I have to say are mild compared to the pain) but my daughters leaving school this week so I have to remind myself that I am here to see that and hopefully many of her life adventures so I count myself lucky that im relativley fit and able to enjoy a full life. After seeing that poor man who lost his partner we just have to count our blessings as Im sure we all agree .                 Good Luck to you and dont be scared of the op the recovery from surgery for me was only really a couple of weeks but take it easy and dont rush around  xx
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    • Posted

      You are so right. I've lost family members and friends to cancer. I've got a sister in law who is fighting bowel cancer now. We sure do have to count our blessings. Since diagnosis I have taken it as a warning. My diet was not good and I had got very unfit. But I've been working out and have taken the wait for surgery as an opportunity to change things. Health isn't something to be taken for granted. Thanks for your kind reply x
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    • Posted

      HI lisa I feel for you you poor thing.Think that is so true,its like a ticking time bomb.Hope that you get well soon x

       

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    • Posted

      Its actually very helpful to know other experiences as this condition can prove quite a lonely journey as you have to make these life impacting decisions. I'm very indecisive to start with, I do make up my mind, but the next day, wake up feeling completely the opposite!! I've had a previous big op and that was something of an emergency as I was fast tracked in case it was pathological, but thankfully, turned out to be benign. The decision was much more straight forward that time. A few things were poorly handled by the hospital, too long to relate, but this has also made me less confident in them.

      It is an odd thing when you feel somewhat "lucky" to have classic symptoms but it does simplify the decision and more so if you have had known complications.

      Hope things will improve for us all soon x

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    • Posted

      Everyone is different of course as well as the circumstances. It's all attitude and following thru after surgery.  Age can be a factor, and core strength. 

      Though with today's techniques,surgery is not nearly as tough for recovery as in the past. They don't cut thru muscle any more so recovery is quicker. Surgeons now make a very small incision. A lot of advances have been made for gb surgery. You will do well and best wishes for success and living in no pain. 

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    • Posted

      It's odd saying it but I had guessed it was gallstones before I was diagnosed. The classic symptoms had me diagnosed quickly and left me in no doubt that having my gallbladder removed was the best option. In that respect only I feel lucky compared to what others have gone through. Good luck with whatever you decide, Cynthia :-)
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