Gallstone- NHs won’t remove

[silverdarkness]

Anyone know anything about acute cholecystitis? I have had an awful time earlier this week and was in absolute agony in my stomach and back and unable to eat or sleep for 36 hours throwing up water even. I ended up in hospital on morphine and diagnosed with acute cholecystitis. My gallbladder is very inflamed and thickened and I have at least two gallstones the size of 50ps. I was sent home with codeine( didn’t work for his attack anyway)and told by the consultant to come back in 2 months for a check up and to never eat anything with fat in it again ( I am already a healthy weight). Unless it happens again and then I must go to a and e and then they MAY remove it. I had some awful pains just before Christmas but was not diagnosed yet so the Gp just said it was prob intigestion so this is the 3rd or fourth attack really but they won’t “ count” those ones just the ones that result in hospital admission. From what I have read online(NICE guidelines and nhs pathways)I should of been offered a gallbladder removal within a week and antibiotics as this is the standard treatment and this can be dangerous. Just wondered what others knew about this particular condition if they keep refusing to take it out what can I do??

I'm sorry you're in pain, gallstones are horrible.

From what I understand you MAY need antibiotics IF they think you have an infection. You haven't described the symptoms of an infection, but I'm not your doctor so I have no idea if you have an infection or not.

In terms of removing the gallbladder, it's not "standard" to whip it out within a week, quite often they'll wait a few weeks until the inflammation has gone done to take it out (sometimes they'll have to take it out within a couple of days - depending on the circumstances and sometimes they don't have to take it out at all).

If you're desperate to rid yourself of an internal organ and the NHS isn't in agreement with Dr Google's treatment plan you can either ask for a second opinion, or go private.

I had to wait for four months after diagnosis to have mine removed. I do sympathise, the pain of an attack is excruciating.

I had 3 admissions to hospital in quick succession before they would remove it. I then spent a 2 weeks in hospital waiting on surgery while still having frequent attacks then a week in hospital afterwards as a stone got stuck in my pancreas.

If I were you I would just keep showing up to a&e with each attack that can't be managed by painkillers.

It's the worst pain ever

Thanks for your reply but the information I got wasn’t from dr google it was from the nhs pathways for gallstones and the NICE guidelines that doctors in the uk are meant to work by. And they said it was infected( as indicated by thickened wall, vomiting and temp) and i have not had an suggestion of it being removed in a few weeks I have just literally been sent home. It literally says on nhs website that removal is the best option. And nhs pathways for gallstone state I should of been offered a removal

I had to wait over a month for the inflammation to reduce before they were able to operate and remove my gall bladder. So asking you to come back in 2 months isn't necessarily wrong. In the meantime, make sure you avoid all and any fat to reduce your risk of an attack. You being a healthy weight is immaterial. You have to avoid consuming any fat. Even a spash of semi-skimmed milk in your tea can be enough to trigger the pain. Has to be skimmed milk or not at all. There are some good books about fat free cooking that will help you.

My 5 year olds has 30 plus gallstones she had one attack but they said they would wait and see she hasn’t had another one so we are not removing them yet.

Sounds very off to me - I had mine removed recently. I'd had one attack in pregnancy which wasn't diagnosed (went to hospital), then another about 4 months later after baby arrived (no hospital visit). I saw GP the day after who recognised symptoms and ordered blood tests etc then ultrasound and MRI a few days later and put on waiting list.

As it was I then had another attack a few days later and ended up at A&E where it took morphine to control the pain. At that point they moved me to semi-emergency and it was removed 3 days later.

In my case the attacks got more frequent so you might find you have more soon. I'd suggest going to A&E when you do - the pain is fucking horrendous and if it's what they require to take it seriously I wouldn't hesitate. It's out of line with my experience though, and this was only 8 weeks ago.

Theres a good supportive Facebook page, pro-surgical, lots of advice on managing the pain etc....might be helpful.

OP im sorry to hear this. Ive had gallstones . Mine was after weight loss so i wasnt consuming fatty food.

I lost 10 stone 16 years ago.. I got gallstones and it got so bad i couldnt eat SOLID food. i went through months and months of excrutiating pain and A + E admission. In and out of A + E for TEN MONTHS. then doctors coming to my home to give me morphine injections whenever i had an attack . Finally a doctor prescribed me morphine pills which melted under the tongue that i took every time i had an attack. First attack was 3 July 2002 Scan was on 19 Dec 2002 after months of A + E admissions . Early Feb 2003 i got a letter telling me id have to wait for ANOTHER YEAR. I cried my eyes out and actually considered suicide. It was only after a private consultation with a surgeon and then another admission to hospital and an NHS appointment with the same surgeon that my op was promised within 6 weeks It was done 5 weeks later on 28 April 2003.id lost 8 stone by the time i had my op. The surgeon and two doctors told me it was caused by losing weight too fast. (slimming world) The pain was excrutiating and the first attack appeared after id lost nearly 4 stone. Back then i had no idea fast weight loss could cause gallstones I was losing a stone a month and whenever i did try to slow it down i either stayed the same or gained.

I actually did seriously consider suicide especially after i got the letter telling me id have to wait ANOTHER YEAR. I thought it was beyond cruel especially when id lost the weight by myself with willpower.

i believe due to mixing tramadol with as many over the counter drugs as i could in the early months to stop the pain i have been left with long term issues and its also left a bitter taste in the mouth TBH. Im grateful for the NHS but i was in so much pain i was thinking of overdosing (which i was bloody close to anyway) i also think the fact i won Class Slimmer of the Year and started to appear in our local papers may have been a factor in me getting the op sooner than that awful letter said but i shall never know.

Thanks 🙏 I guess it’s all due to cutbacks as this is the 3/4 attack I have had but they need to “see” me have them. If I completely avoid fat forever I will never have an attack they won’t need to do the op right? But then will that be good for me? To never eat fat.. because the consultant was talking like that’s what I have to do for the rest of my life.

The reason I mentioned my weight is that I can see me becoming very under weight if I cut out ALL fat

To the lady above I’m so sorry can’t believe you had to go through all that! That’s awful :(

It’s funny I did slimming world too a year ago and lost 2 stone in 3 months. I wish they would warn people!

and then you will probably be accused of having an eating disorder.

i had to wait nearly a year for my op and that was after endless admissions and appointments.

Gallstone patients have always been treated like this.

I don't think it's cuts, you're not being asked to wait any longer than I did eight years ago.

None of my attacks were directly triggered by fat ingestion, so I wouldn't bet on it stopping them anyway. But you can't live like that long term.

But blue lady I am.. I’m being asked to just eat no fat... for the rest of my life

If you had cholecystitis it would be ideal to operate on the same admission however it may not have been possible to due to overriding clinical emergencies. If the symptoms of cholecystitis ( not just biliary colic which is the pain after eating caused by gallstones) have been going on for more than 5 days then they need to wait 6 weeks for the acute inflammation to setttle down so that it is safer to get it out with keyhole surgery. In the intermediate time it is all a very sticky mess! Don’t worry that the stones are big - small ones often cause more trouble!

Silver yep and when i did it it wasnt well known weight loss could cause it either.

Avoiding all fat just to suit the NHS wallet is stupid advice The body needs some fat as part of its requirement what with it being a human body and all.

It's not healthy to never eat fat again, we all need some good fats and fat-soluble vitamins.

It sounds like you have been treated very shabbily, OP. I agree with the advice to show up at A&E as soon as you have another attack that you can't manage the pain of. Then, when you are there, query why the NICE guidelines aren't being followed. Then complain to PALS if they continue with their stance.

They're usually quick enough to follow guidelines when it allows them to say no to something. Funny how they're not following them here, when surgery is so clearly indicated.

my attacks were triggered by SOLID food. Its a good job i had a couple more stone to lose , if i had been made to wait ANOTHER year like that letter said i would have ended up very underweight.,

They said to me when I said it wasn’t realistic if you eat fat “ you will have to deal with the consequences” I have to admit I have put my story on my Facebook and have had 5 people message me from my friends list with horrible stories of how they had to wait and things went wrong. I can’t believe they take these risks with peoples lives.

I thought the consultant told you to go back in two months. Did I misunderstand that?

Yes he did but he said there’s no need to remove it. And the NICE guidelines and NHs pathways state that removal should be offered

And that it should be my choice..