Gallbladder Op: Just wondering if anyone... - British Liver Trust

British Liver Trust

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Gallbladder Op

Purplelamp profile image

Just wondering if anyone has had a gallbladder op recently. I’ve been on the list since November 2020. Gallstone now 80mm and common bile duct affected. Sick of not being able to eat properly and the fear of pain returning. I’m in Wales. Anyone been successful being seen?

29 Replies

Hi, sorry to hear you have been on a waiting list for so long!!!! I have gall stones but no pain so far. If you don’t mind me asking how long have you known you have gallstones ? If so how long before you new you were having to have your gall bladder out? Did any of your blood tests cause any concern ? I know it’s a simple opp if that helps as when I was in hospital in Feb after my angiogram I hit talking to someone I new who had hers out recently and said she was home the next day! x

Purplelamp profile image
Purplelamp in reply to

About 2 years. Mine has grown 6cm since November 2020. I thought I just had IBS. Very painful now when it starts. Keep going to a&e who send me away with morphine. Paid private for up to date scan this Feb. Showed 8cm stone and ALT is high as dilatation of bile duct. Private doctor referred me back to NHS but still waiting.

in reply to Purplelamp

That’s terrible !!! Sending you home with morphine I literally can’t believe how you have been treated. Have you any idea how long the wait list is? Can’t you ring your consultants secretary and explain your in agony? I would also put a formal complaint in using PALs. You could be at serious risk if it ruptures. What can you eat if anything ? :(

Purplelamp profile image
Purplelamp in reply to

I tried PALS, my local MP everything. Its really bad in Wales. Practice nurse told me they weren’t operating but denying she said that now. Just wondering if anyone else had got surgery. We scraped together 7k for private op but because its more complicated Spire have referred me back.

Hi, yes the Spire and the BMI hospitals are reluctant to do my double hernia op because I have Liver Cirrhosis. The BMI in North London cancelled the day before the procedure after passing the pre-assessment and was negative for Covid. The secretary said it’s too risky for them because I need to go have it done at a larger hospital where they can cater for my needs. Went back to GP and have been referred to the Royal Free hospital. Go back to your GP in a taxi cab and get the Receptionist to see how much pain you’re in. They have a duty of care to attend to you.I can’t help with the awful pain you’re in as you can’t take Ibuprofen.

Good luck

Just looks at my ruler !! You poor thing that’s massive !! You must be in agony. It’s terrible leaving you all that time and dangerous !!! :(

Hi , I’ve been in pain for 3 years , was admitted to hospital via ambulance with gallstone pancreatitis and stone stuck in bile duct . Have had 2 ercps and am scared to eat because of the daily pain , lost lots of weight . My actual op has been cancelled twice so still waiting , really do feel for you , bloody awful x

Purplelamp profile image
Purplelamp in reply to Catty1234

It is awful isn’t it. I’ve lost weight too. Scared to eat anything. I’m getting to the stage where I can’t pick my granddaughter up as my side aches for ages after and I dread another attack happening.

Catty1234 profile image
Catty1234 in reply to Purplelamp

All I can eat is rice cakes and bananas and water ! Have been to a and e many times , the pain I can’t even put into words . I’ve been calling my gp and the consultants secretary begging them for the op even though I’m terrified I’m more scared of getting another stone stuck and pancreatitis , honestly thought I was going to die !! I do hope you get your op soon fingers crossed x

Hello Purplelamp

As you might know, these gallstones can cause havoc when they become stuck in the bile duct.

For some years my wife was having high liver enzyme readings. Her doctor would carry out a liver function blood test, and when these readings were high, he’d just repeat them six weeks later. This time, the results were normal, so he just put it down to a possible infection.

This went on for over two years. Finally, a scan revealed that she had seven gallstones leftover from when she’d had her gallbladder removed some 12-years previous. What was happening, was these stones would become lodged in the bile duct, which would cause the bile to back up into the liver, which in turn would cause her liver enzymes to rise. Later, the gallstone would become free, and bile was able to flow again. The liver enzymes returned to normal.

This was repeated for years until the stones were finally removed back in 2019.

Although these stones may seem harmless, they could block the flow of bile, which if left could become infected and cause liver damage if left untreated. I say this, just as a word of caution.

Keep the pressure up to have these stones dealt with and removed.

Good Luck

Richard

What about contacting your local paper? That might help if it’s splashed across their front page!

I literally feel your pain! I too am waiting. Admittedly not as long but the Drs do not seem interested in the pain I am in until I get my gallbladder out. I am also on a low fat diet. When I get a bad attack and contact my Drs I am told to take paracetamol! I have an app with the specialist in 6 weeks… I am hoping this will give me an indication of how long I will be waiting for my op. I hope you can get seen soon. Take care.

Thank you. I hope you get sorted. This low/no fat diet is no fun. Plays havoc with my guts. Having to drink fybogel every day. Paracetamol doesnt touch the pain when the gallbladder starts contracting. They give me oramorph at a&e. Even that only dumbs it down a bit. Its the constant anxiety every time you’ve eaten something that its going to start. We shouldn’t have to live like this xx

Exactly my pain gets quite bad when I am hungry to so it’s getting the balance right! Xx

Have you tried Buscopan only thing that helps my pain stops the contractions also take with ibuprofen

Purplelamp profile image
Purplelamp in reply to Arms-1

Yes, thanks xx I do take it but when its bad it doesn’t stop the contractions. I asked the GP if they do a stronger anti spasmodic but he said they don’t

Arms-1 profile image
Arms-1 in reply to Purplelamp

I know the pain is horrendous!! if I catch it soon enough I can stop it taking one but taking two with pain relief if an attack starts can stop it within 30 mins instead of pain for hrs 😥I had my gallbladder out Oct 20 but have stones left in bile duct so still have attacks the same as when I had gallbladder, tried 2 ercps to remove them failed so now having them surgically removed got pre op on 12th . I understand how you feel the pain 😭 hope you hear something soon it affects your life so much x

Purplelamp profile image
Purplelamp in reply to Arms-1

Good luck with your op. I’m sure they will get them. Keep us posted xx

Reading all of this is very worrying. I have a gallbladder full of gall stones causing no current pain but my ALP has started to fluctuate. I have another blood test on the 18th. I am on lots of heart medication after a HA and a stent fitted so cannot take any painkillers what so ever. I don’t know what to do if they start moving and cause pain. I also have to eat regular meals because of my liver. Not much hope for me if no one else suffering unnecessarily seems to get properly looked after. I feel so annoyed for everyone suffering.

I too have gallstones, diagnosed about 18 months ago. I had five episodes of excruciating pain and asked for a scan which showed I had several gallstones which had damaged the liver. The consultant told me to eat lots of salads and the GP said zero fat. I ought two books on low fat zero fat recipes. I have eaten out and chefs have made me tasty meals like Monk fish with a tomato sauce and green beans which was great. I have lost nearly two stone in weight and don’t want to lose more. Like others I do feel a pain in my right side but not excruciating now.the pain increases when I am hungry. I have Buscopan but have only used this occasionally since the zero fat diet has excluded the extreme pain I had before, where I was also vomiting bile.The lady from Wales might also use Shrewsbury hospital where I am. I live in a border town of Wales and England. I was told that since I have been booked in for a routine operation I would be at the end of the list. The consultant told me not to have the operation in winter but to wait for Spring/summer. This is due to a lung condition. I am eighty at the end of the year and don’t want to wait too long. The post office wouldn’t even insure me for travelling because of the condition. What to do?

in reply to Paintingicons

It sounds to me like everyone suffering in your area needs to get together and jointly complain. Who are they treating in Wales with gallstones??? Sounds to me like nobody!!!! Maybe Citizens Advice might help with how and who to complain to. Someone could be seriously in danger with complications in my opinion !!!! 😡

Total sympathy to all of you out there suffering with the nightmare of gallbladder pain. The reality is though, speaking from my own experience, that those being operated on fall into two camps. Firstly, no liver disease and the operation is done as an emergency procedure when the patient presents at A and E with life threatening symptoms. Secondly, you have liver disease and you are expected to put up with it until this becomes no longer tenable due to your situation having tipped the balance.

There is a common perception that a gallbladder removal is a straightforward procedure, but having spoken to many heps and surgeons, this is not the case for everyone. If you have advanced liver disease (cirrhosis), then there is a very real risk that your liver will decompensate during the operation. The reality is that for those with advanced liver disease, the removal of the gallbladder is actually more risky than liver transplant. So those hoping to get it done privately are likely to find that the clinic will not touch you because they are not in a position to transplant you, should the need arise. In fact I was told under no circumstances to get the operation done anywhere other than the major centres that can handle a possible transplant.

Eventually you will have lost so much weight, that the chance of you surviving surgery with further loss of body mass, poor muscle etc will tip the balance, but until then you are expected to "suck it up". Unless the possibility of other things, such as pancreatitis etc become a real risk, then you are expected to deal with it. I'm amazed someone was given oromorph from A and E, as the strongest thing I was given was codeine!!

Initially they will hope to do "keyhole", but will convert to "open" if the need arises. Surgeries of this type were difficult to come by 12 months ago, due to Covid, presumably now they are playing catch up. Surgeons want to do the operations, but their hands are tied by the directives issued by Government. Hopefully now things are easing off, there will be an increase in surgeries, until then, I wish all those waiting the best of luck.

Thanks for your reply. I don’t know what category I am in but it wasn’t straight forward because of the bile duct. Had news that I will receive an appointment for mri so at least some progress.

They will deal with you, but unfortunately it seems to be taking longer than it should. I hope the MRI gives them enough info to push you up the list. Best of luck dealing with all the pain. Avoiding fats helps, but for me it didn't stop the attacks once I got nearer to surgery. All the very best.

in reply to CarpeDiem11

Oh well that’s not good news for my future then as I have some fibrosis. Feel extremely depressed now. Think the best thing I can do is leave this forum. Good bye everyone and good luck

CarpeDiem11 profile image
CarpeDiem11 in reply to

Fibrosis should not be an issue. It's advanced liver disease (cirrhosis, not fibrosis) that causes the problem. Please don't give up!

Had mine in 2019 as with the same as you couldnt eat certain foods ,im sorry to say its not got any better for me but im just one case and i do have problems with my liver aswell ,but i know it has worked for others i know who are great and can eat and go about doing everything and anything .. all the best 😊

Hi Purplelamp. Here is alink to our Patient Charter which may be useful.

britishlivertrust.org.uk/wp...

Thank you

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