Strange gallbladder problems. Anybody else?

Tom I totally agree with what your saying. I went private here in Ireland and have no doubt now if I was in the public system my gallbladder would not have been removed. I had 1 large stone causing me pain which I only had for 6 weeks when I had the operation. My surgeon whom I've known for 23 years recommended removing the gallbladder as the stone was too big to get out and he said things would only get worse. Well unfortunately things got a whole lot worse after my operation last December. Has been hell on earth. Vomiting diarrhoea nausea pain. Have only started feeling better in the last 6 weeks. I also had a large cyst on my ovary which they neglected to tell me about when my stone was diagnosed. I now believe the cyst was a big part of my problem and not the stone. It's the one operation I will always regret but have to try and live with it now. The only hope I have is that there are many people who had problems for 12-18 months after the operation and it does settle down for most. Like everyone else I read all the horror stories before my op and said that wouldn't happen to me but it did and unfortunately I now know a lot of people who suffered afterwards but their bodies did adjust in time. I wish you well with your operation. Keep us posted on how it goes. Take care xx

Yeah, I have read a bunch of stories of people who have had horrendous side effects from the surgery, which is certainly a little offputting! I've had a few tests done, the US & MRI w/Contrast confirmed gallstones, and the endoscopy was clear. I asked for what I believe is the HIDA test, but was informed by my GP that it didn't exist, until I had him Google it, at which point he told me it wasn't something that was performed in the UK. I am considering going back to the GP and requesting more tests, but the surgeon was pretty confident. I'd thought about going private, but managed to see a well recommended surgeon pretty quickly on the NHS.

In all honesty, I feel like the removal depends on the level of pain, and interference to your daily life. I have at least 2 attacks per week which will sometimes keep me up all night, sometimes first thing in a morning, and both will render me useless the next day. I also just "lost" my summer job due to this, they sent me home because they didn't think my body could cope with the level of pain and stress. It makes it hard to work when I'm walking to work still in pain or have been up for 8 hours already in intense pain. I've lost so much weight that I'm practically 7 stone of pure muscle, and I have such a strenuous job, I don't know how much longer I can physically go on this way. So for me, even if there's only a 90% chance that this will stop the pain, I think I'm willing to risk the 10% of complications. But I know that it's not that cut and dry for everyone, and the pros and cons of any type of surgery should be weighed heavily. My main concern is that surgery may not stop the pain. 

I hope you manage to make an informed decision about what is right for you. I'm sorry your family were not afforded that luxury, I guess that's always one benefit of the NHS, they're less likely to chop things out since they're not taking your money! 

Wow, that does seem a little insane to have been recommended the surgery after only 6 weeks. Not that I doubt it was 6 weeks of hell for you!

As much as it's terrible, I do wonder what position you would be in now, if you'd left the stone to it's own devices especially if it was too big for them to do anything with? I literally don't know how I've made it through this past year with this pain, I've told several doctors and nurses that I truly feel this will kill me, either from the amount of painkillers I have to take to get it under control, or from when I throw myself out of my window after being unable to cope with the pain anymore! I'm mostly sarcastic, but my friends have now begun to use the "window" as a pain scale - "I'm on the ledge. I'm not about to jump, but I wouldn't be upset if someone were to push me!"

I do hope that your body manages to settle itself down, I guess it makes sense that they go a little haywire, it's a lot of readjusting after a surgery removing a whole organ! I'm so sorry to hear you've had complications, especially since there were things you were uninformed about. I hope that you continue to get better, if you've started to improve then perhaps you're over the worst and are starting to go on the up. My fingers are crossed for you

 

Thank you so much Sarah. My gp tells me I would have ended up with severe Inflammation in the gallbladder because the stone couldn't get out. My surgeon said my gallbladder was inflamed. Funny thing my cousin had the very same as me last year 1 large stone that couldn't get out and she was in agony but no inflammation. She had hers removed and hasn't had 1 side effect. Can eat what she wants no problems and my other cousin had it done 37 years ago aged 21 and has had diarrhoea ever since but her daughter had it done last year and she's fine can eat everything just can't drink red wine! You've been suffering a long time and I've no doubt you will bounce back after the operation and it will be a new lease of life for you. Good luck and take care xx

The other thing they might have been thinking of in your case is an infected GB.  Bloods can show infection.  Also a blocked GB can rupture, I believe?  I was told by my GI specialist that there are risks when in severe pain and while my GP has left me with morphine (Oramorph) the GI suggests that if I am in that much pain I'd be best going to A&E.  I get the idea that you only really understand all this stuff when they finally fix it, not when you need to know!!  When I first went to A&E they were saying it might be dyspepsia but with what I know now it most certainly wasn't.  Hey ho!  I guess they do the best they can -- I suppose it's one of those things with a very wide range of signs and symptoms and the diagnostic equipment (US + MRI) is very expensive and needs highly skilled operators.

My experience is that even after having gallstones confirmed by ultrasound scan, the NHS wouldn't accept my months of repeated excruciating central chest and back pain was because of my gallbladder as I had concurrent history of acid reflux.  In the end I went private (in England) and post op my surgeon said my GB was inflamed and diseased and needed to come out!  I think the NHS is so over stretched and short of resources that they will try to convince you that you don't need surgery (I have no axe to grind, I am a retired NHS employee of 30 years).  I am one of the fortunate ones who's had no problems after the surgery after the first couple of weeks of recovery, except if I go stupid with my diet - have learnt the hard way not to do that.  For me, it was money well spent and haven't regretted it for one moment.

Thanks Tom. I did have blood tests and they were all fine. There are a lot of people having the gallbladder removed due to stones and a perfectly working gallbladder. They need to find a way to take out the stones. I don't know anyone who has been offered the medication or laser therapy to get rid of the stones. I believe they have developed a revolutionary new surgical procedure to take out stones in china but it hasn't been done anywhere else yet. I do believe they used to take out the stones a long time ago before they decided to start removing the whole organ instead. Nelson Mandela had stones and they removed them and left the gallbladder. Particularly in cases like mine when I only had 1 stone it's unfair and wrong in my opinion to remove the organ. I had my bowel removed 22 years ago which was a far more serious operation as I was very very ill and that was nothing compared to this operation. For some reason my body didn't like my gallbladder being removed. I can only hope it eventually adjusts fully. X

Thanks Susan. Am glad to hear you had a positive outcome. Did your reflux go after the operation too? Are there certain foods you can't eat now? How long is it since your op? Unfortunately none of us know how our body will react after the organ is removed and no doctor can predict the outcome either. My surgeon genuinely thought he was doing the right thing for me as he felt things would only get worse. I did research it and took my surgeons advise. I also spoke to several people who have the same medical history as me and they were all fine. Unfortunately I had full open surgery too which didn't help. I know so many people who had awful side effects after the operation and most got better between 6-12 months. My gp had a young woman who had 3 small children who had the operation and had horrific vomiting and diarrhoea pouring out of her for 8 months and then it only started to get better then and took another 4 months to fully stop. She's fine now. Unfortunately I had a large ovarian cyst at the same time which I now believe was causing me a lot of problems too. Anyway good to hear you were one of the lucky ones. Take care xx

My reflux is 15 to 20 years 'old' and is because I have a lax sphincter at the bottom of my oesophagus (it seems to be an hereditary thins as g/father, mum and sister all had/have the same). When I had an endoscopy to diagnose the reflux no hiatal hernia was found but might have one all these years later.  Take Lansoprazole for the reflux.   Having my GB out almost 2 years ago has made no difference to the reflux unfortunately and I never expected it to.  I avoid fatty foods, cream etc but did that anyway because of family history of heart disease.  What I did find was I developed a inability to cope with alcohol, well, wine mainly.  Whether this is because of the op or because I went teetotal while suffering the attacks (for about 18 months) and lost my tolerance I don't know.  I do miss my glass of Rose.  I found half a small glass was like having 3 medium glasses before.  I was very worried about the possibility of bowel problems, diarrhoea and such and discussed this with my GP, but she said the risk was low and anyway, they had drugs to deal with that if it occurred.  My only probs were immediately after surgery as I always go into urine retention after general anaesthetic and have to be catheterised and am usually very sick.  My recovery was short, a couple of weeks of feeling sore but after a month I felt back to normal.  Oh, I had a laparoscopic op, not open.  I feel for all of you who have these awful after effects.  I did mention in my very first post on here (which seems to have been removed or never made in on) that some people with severe pain after removal of GB need to investigate the 'sphincter of Oddi'.  This sometimes narrows after surgery and causes problems.  Hope that helps.

Tom, I've read your comments and you are spot on.  There is a difference between gallstones and having an infected gallbladder.  I had both.  When I had my operation to remove the gallbladder I nearly died.  But I would've died if it hadn't been removed as it would have ruptured.  My recovery all things considered was good.  Now 2 years on, I have a large post operative mass where my gallbladder was.  Apparently there is still internal bruising from the operation.  Just waiting to see a Surgeon to see what, if anything, can be done.  The issues that I had with a dodgy gallbladder are practically the same now.  Except the excruciating pain elements.  But I'm so bloated, and tired to the extreme and in constant pain.  But what can I do.  I had to have the gallbladder out and now I am stuck with the consequences.  The more one reads, the more one realises how many people suffer and how these things affect individuals in differing way.  I agree with the person who said at least we all know we are not alone.  It's the only time Doctors and Consultants will ever tell you to search it all up online as you get better information there than everywhere else.  I wish everyone good luck and good health going forward.

Littlemissdolly am so sorry you are still suffering so long after your operation. Your not alone. So many of us suffer after this operation. Doctors tell us the gallbladder isn't an important organ but It's vital to our digestive system. I was told side effects were very uncommon prior to the operation by my surgeon and then was told by the top gi doctor here in Ireland it was very rare for someone to get diarrhea after the operation. This isn't true. I have since spoken to so many who had problems for a long time afterwards and most did recover albeit some after a few years.,I'm sorry you nearly died prior to the operation. I do know someone whose gallbladder ruptured and they were very ill for a very long time after the operation but did eventually make a full recovery. They say 80% of people who have the operation will feel better after the operation with the other 20% either feeling the same or worse. Unfortunately we can't predict which category we will be in and either can the doctors. I hope you see your surgeon soon and get some answers and treatment and can start to feel better. Take care xx

Thank you Susan. I had reflux surgery 12 years ago and it was a success. Had to take ppis last year as had some gastritis from iron tablets. I have read some studies that suggest ppi drugs can cause the gallbladder to contract and cause stones and disease! They gave ppi drugs to healthy people and found their gallbladder function reduced greatly after a month on them! Unfortunately we take meds to make us better and then get side effects! I feel my gallbladder problems were due to a hormone drug I was prescribed by my endocrinologist as the side effects were increased estrogen which is the main cause of gallbladder problems in women. I have had some pain under my ribs but not where the gallbladder was its up a lot higher. It comes and goes and lasts for a few seconds at a time. I'll mention sphincter of oddi to my doc again but she said to me that it would take a year for everything to settle down as she's seen all this before with other patients. In her 35 years as a doctor she has only had 1 patient who got the bile salt diarrhea. I'm still taking psyllium husk as I'm afraid of getting the diarrhea again but when I feel better I'll try and stop it and see what happens. Thanks again and take care xx

Acejohnston, Thank you so much for your lovely message.  I'm really touched by your words and understanding.  Thank you for taking the time to reply to my post.  The kindness of strangers never ceases to amaze.  I wish you well.  You please take care too.  xx

Rachel thanks for posting this. I had mine removed in December due to 1 l

Sorry - due to 1 large stone. While I regret the operation as I've had nothing but hell since I do realise what happened to you would probably have happened to me eventually. I only had the pain for 6 weeks and my surgeon recommended removal as he said it would only get worse. The difficulty was the stone was too big and couldn't get out. I hope your operation was a success and you have had no lasting side effects. Take care x

Acejohston, you are right.  You are damned if you do and damned if you don't.  We just have to keep on keeping on with a smile on our faces eh.

Rachel, I am really pleased for you and for all those that have simple operations and good results.  That is quite rightly how it should be.  And how it is reported in the main.

Good luck to everyone.

Little miss dolly Your so right. All we can do is hope things will improve. I feel so sick today and yesterday too which is so disappointing as had been feeling better the last few weeks. It's hard to keep positive when you didn't have these problems before the operation and have a 4 year old to look after. Take care and keep the chin up. Xx

Ah, I feel for you Acejohnston I really do.  Hope you feel better soon.  It's not like there is any reason for feeling poorly on any given day right.  It's so frustrating because you can't plan anything.  And your little one.......probably keeps you pushing on when you don't feel like it.  It's hard to do anything though when you are on the point of being sick all day.  As you say, we'll keep on pushing those chins up.  Doesn't the sky look lovely this time of year?!!!  xx

I'm in the situation you were in. I have many stones in the GB and had two really bad episodes, into A&E then in hospital, US and MRI, so they gave me an ERCP but the stones must have passed.  They say the problem will recurr anytime and I'm seeing the specialist in ten days to see if the GB should come out.  As I type this, I am feeling OK other than near zero appetite (good for my weight and bye bye moobs!) but feel constantly a little nauseous.  I don't know what to do given a choice.

I suppose I'll take the Dr's advice. Advice on the forum is a great help but nobody knows exactly the situation and few of us have medical degrees!

Ah Tom, I feel for you.  I think it goes back to what we were talking about earlier in the week as to whether the GB is infected or not.  You are right about things coming back and causing problems again.  Also stones can get lodged anywhere in the system and cause immense problems.  Last year I read somewhere about there is no investigations about what causes the stones in the first place.  When I got diagnosed over 2 years ago there were the 4 F's the A&E Doctor spoke about - Fat, Forty, Female and Fertile.  I fitted 2 of those criteria but I think that that is a load of old tut. 

I concur with you, the forums are a great help but each persons situation is different and we aren't the medical professionals. 

I wish you well.  Let us know how you get on if you want to.  I would be interested though

Little miss dolly you are so right. More needs to be done about the cause not taking the organ out. My surgeon told me its to do with high estrogen levels particularly in women but men can also suffer from it. I have researched it and found that hrt, birth control and other hormone drugs cause increased estrogen. The liver is responsible for filtering everything in our body and when we have too much estrogen the liver can't cope and the bile becomes thicker and more sluggish which causes the stones to form. Also ppi drugs prescribed for heartburn and indigestion which are the 3rd most prescribed drugs in the world can also cause gallbladder problems. There seems to be an epidemic of removals at present with over 700,000 people in the USA having the surgery every year. And what's amazing is a lot of very young people in the teens and early 20's are having the operation. Also they need to look at the long term side effects as I have no doubt there are many. I do know a few people who had it done over 30 years ago and all of them have had digestive issues over the last 10 years. Tom my advise to you is to go by your gut instinct. Mine was telling me not to have the operation but I went ahead and had it. You could try the alternative road that so many find success with. It doesn't work for everyone but if I could turn the clock back I would have tried everything to keep my organ. Doctors recommend the surgery as its a quick fix. A lot of people develop ibs and don't make the connection with the gallbladder removal. I believe they have found a revolutionary way to remove stones without the gallbladder in China but it's not worldwide yet! Although Nelson Mandela had stones and they removed them and left his gallbladder so they can do it! I was also told of the five f's fair fat female forty and fertile! I'm 43 female and probably fertile but have never been fat in fact I'm the total opposite and I'm not fair. A number of my relations have had it done too and none of them fit into the 5 f's either! Take care xx

Tom unfortunately your damned if you do and damned if you don't. None of us know how our bodies will react to the organ being removed. Go by your gut instinct as I wish I had of as it was telling me not to have the operation. Have you tried the alternative road at all? Many have success and then some don't. Unfortunately no one can 100% guarantee a successful outcome. I was actually told side effects were rare which I now find not the case but to be honest most that have side effects do get better and return to a normal diet and life but it can take anywhere from 6 weeks to 12 months to 2 years in some people. I know people that had side effects for all these but recovered. I do know some who have diarrhea after eating fatty food too but not too many people. Some people can't eat certain foods or drink red wine. But these are things you can live with. Good luck xx

Thanks, Acejohnston.  Toss a coin, I suppose but at least going NHS nobody profits from carrying out the op. so the motivation should be sound.  I have experienced completely unnecessary private work in our family both surgical and dental which makes your blood boil.

Yes your right Tom. The motivation in nhs should be alright. I had private health insurance here in Ireland and my surgeon who did all my other operations 20 years ago in the public system recommended taking out my gallbladder. He felt it was the best thing to do and I don't doubt his motivation at all. He genuinely wanted to help me and was very upset at how things have turned out. He phones me regularly to check how I am and has offered to do more tests which I've said to leave for now. You just do what's right for you. It sounds to me like you need to have it done but that's a decision only you can make. X

My apologies for my absence, I've not been ignoring everybody, I was away and left with just my iPad which kept reloading the pages halfway through any replies, so I ended up giving up after the 4th or 5th lost reply! I also really appreciate hearing everyone's stories, it's very eye opening and informative.

Tom, I agree with everybody else, that the decision is a personal one, and you should follow your gut instinct. As I mentioned previously, my decision is based on how much this pain affects my day to day life. It's making things impossible for me, and to be having multiple attacks each week is interfering with my life in such a way that I just lost a job that I loved because of it. So as far as I'm concerned, it needs to go! Plus, 3 & 4 attacks a week just isn't fun anymore. 

I guess the side effects are a chance you have to weigh up whether you're willing to take, not everybody bounces back from any surgery, and you just have to hope for the best. I'm so sorry to read how many people are still suffering, but I honestly feel (having had a pretty severe attack last night) that at this point, I would rather battle the side effects than to continue on with this pain that makes me want to die. As the docs have said, there are drugs that can combat some side effects, there are other things that can be done, but nothing is touching this pain any more. I may not be singing this tune in a few weeks once it's gone and I (hopefully!) forget how bad it used to be, but having just come round from an attack, I want it out, and I want it out now!

Also, on a side note, I've begun to put some weight back on. Which is great, but now my body is reeling from the weight gain and I'm bloated up and pretty uncomfortable. Apparently this is common in people with eating disorders who are underweight, and are essentially "refeeding" their bodies, and it throws everything out of whack. So I'm swinging from extremes. But at least some weight is coming back. We've just had a BBQ, at which I didn't eat much, but a friend cooked a venison burger for me specially as apparently it's extremely low fat, and I have to say, so far so good. I ate at 8pm (I know, what the hell?!) and it's 1am. Fingers crossed I make it through the rest of the night unscathed!