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??

Indeed @GetKnitted , I'm one such sufferer, and explosive bloody diarrhoea with little notice (bowel urgency). The rates for this are higher from laparoscopic surgery than open surgery too.

I had my first attack of Gall bladder pain at beginning of July 2011, I had my op at the end of August 2011. What you need to do is see your GP & ask for a referral under NHS choices to your nearest private hospital that does NHS work, you will get any scans done very quickly, your consultant will give you a date for your ok to be done at the private hospital but under the NHS. You get treated exactly the same as a private patient, but don't pay anything, it's what the NHS does to reduce waiting lists.

The trick is to go to A&E for every attack. Just show up. A&E will then decide with the appropriate consultant if you need to get it removed. You need to bypass the GP.

My friend has been on a very low fat diet for over 8 years since having her gall bladder removed as she still gets the pain even without it. The standard advice for gall stones is to eat s VLF diet it doesn’t mean you’ll never get an attack but will help reduce them. I think you’ve misunderstood what you’ve been told.

'Fair' is one of the four Fs. Something to do with the higher prevalence of these problems in white women.

This isn't only trotted out to females @TimberTot .

@Cherries101 is right, A&E with every attack.

My poor DM has her first attack in 2008 and it took until 2018 to have her gallbladder out. Her life has been transformed. We had to ring an ambulance a few times because she was in so much pain she struggled to breathe and I remember her lips going blue once. She lives alone and has never been good at contacting anyone if she is unwell.

I tried very hard to keep my gall bladder after knowing three people that had had post op complications after removal. One person even died! So I struggled on with my diseased GB and low fat diets. This approach would work sometimes for months at a time but then I'd always end up getting another attack. It was eventually removed last year and my hospital got me in within a few weeks possibly because it was so diseased by then. Yes I did get complications and spent a few weeks wishing I'd never had it out but my life and eating habits are fairly normal now.

I know everyone is different but a few foods that didn't strike me as being particularly high fat but always started me off were; eggs, cashew nuts and soya beans. I also avoided all alcohol as half a glass of wine would have me doubled over.

cashew nuts

Oh yes, sucks as I love them, but they start an attack within 15 mins of scoffing...

I would get a second opinion. My mum had this same issue a few years ago and it got to the point that she got rushed to hospital in extreme pain, they operated, her gallbladder was removed and it had caused pancreatitis. If they hadn't operated then, she would have died. Gall bladder issues can basically poisonous the pancreas so its a serious problem. It's not great to remove it, but it's better than your pancreas not working.

How you are treated depends on how busy the surgeon's are. dh went in on August for the first time and was operated on straight away (he had had previous attacks at home but we initially assumed it was a stomach bug). There were patients in the other beds though who had had several visits to A & E over a period of months before they received their operations.

A and E -bypass the GP. I went the GP route and just got into the inevitable watchful waiting, in the hospital system but waiting....long lost weekends of pain. Not sure if it is planned fobbing off of women - probably. Also PALS as a complaints route.Good luck. Hope you get resolved get soon.

I have this. First time I got it I thought I was dying it was worse than childbirth
I’ve had to cut out all triggers (avocado by far the worst) and most other fatty foods. I live in fear of another attack

Commiserations Op. I suffered from gallbladder pain for over 18 months from it first being diagnosed to having it removed on the NHS. The operation actually went wrong and I was very poorly for a while but it ended up being successful. I spent 9 months on the supposed 22 week waiting list for the op and only got it scheduled after I complained to PALS.

Agree with others, go to a and e every time you have an attack. The only things that helped me were tramadol, buscapan and slippery elm.

Eating fatty foods weren't a trigger for me. In fact for the last few months it didn't matter what I ate, I got an attack. Caffeine seemed to be a trigger as did sparkling water!

Good luck Op.

My gallbladder flared up for the first time when my first DC was 10 days old - definitely caused by hormones.

I tried a fat free diet but v hard when breastfeeding I kept having flare ups which was v difficult to manage with newborn and couldn't take strong painkillers re breastfeeding.

After about 6 weeks of almost daily attacks my GP admitted me to hospital and told me to stay put until they had removed my gallbladder.

I had it removed laparoscopically and have had no problems since. I can eat fat.

Hello everyone,
I am so shocked to read all your stories this morning. I was shocked at the nurses reply admitting this treatment is common place. I can’t believe the nhs thinks it’s okay to completely ignore people in pain like this when a) it’s clearly having a huge negative effect on people and there lives.
b) the NICE guidelines are being completely ignored at the risk of people’s lives. c) Nhs own pathways for gallstones state it should be up to the patient if they are suffering with symptoms.
I read that many of you had to fight for the scans and tests. I experienced this too.. I’m an intelligent women but was dismissed by health professionals and yes told to take paracetamol when that clearly wasn’t going to cut it. Is it fair to expect someone to live like that for the rest of their life? Is that the value we have to the NHS? Save a bit of money but never mind the conquences.

I’m not surprised 95 percent of people don’t eat a fat free diet for the rest of their life. Because it’s not realistic or safe! And it’s not fair when a simple operation ( I’m low risk) can reduce the risks for the rest of my life. I will be chasing this as I’m only 32 years old, healthy and have two children who I want to stick around for. Plus I have had no end of people around me warn me of what happened to them when the nhs failed to remove their gallbladder. The risks are real and huge. If not I will be opening a PALS complaint. Thank you everyone for all your advice and support. I really hope everyone that is suffering from this gets help soon.

No advice but I’m in the same boat, just been signed off work as I’m constantly nauseous and retching, only reason I’m not vomiting is that I can’t actually eat. Plus dizziness, shaking, diarrhoea (god knows where THAT’S coming from) on top of the colic pain. Awaiting a scan in 2 weeks time.

I had mine out privately after suffering pain for about a year - triggered I believe by pregnancy.

I found a gallstone attack much much more painful than having DS. I did the whole of labour and delivery on paracetamol but found gallstone pain completely unbearable. I don't think I have a "low pain threshold" as mentioned by a PP.

Definitely worse than childbirth!
Although I had acute pancreatitis so the same day I went to A&E in pain I got moved to intensive care! I was on mat leave so every time I had a pain attack I’d just lie down (I had a very easy going baby!).

I don’t have anything helpful to say other than watch out for it getting worse and giving you pancreatitis. Can you just request a removal at your next appointment and join the waiting list? Do you/partner have work medical insurance that you can have the operation arranged through? Good luck, it really is an awful condition to manage.

I remember the gallstones diet being really restrictive. No fat included no meat, but could have some fish and I could have prawns but not the heads. No tomatoes, onions, garlic and bananas. I was basically living on salads.
I lost a lot of weight and was only doing it for a few months before I had my gallbladder removed. I was fat so could afford to lose the weight though. I can't imagine it would be sustainable for an average weight person.
You shouldn't have too but I think all you can do is keep pestering the doctors.

I had gallstones confirmed and it took 18 months and for me to turn into Bart Simpson before they removed my gallbladder. Stones escaped and blocked my bile duct which is why I turned yellow. During that episode I spent 6 weeks in hospital, had x rays, different scans, stents put in, bloods taken daily. I must have cost the NHS a fortune. If they'd just taken the bugger out sooner, I wouldn't have been such an expense.

Yes i remember DH saying i looked yellow. These are all perfect examples of the NHS spending a thousand pounds to save a fiver.

@OneInEight Interesting that your DH got operated on straight away after one attack.