Gallstones - experiences please!

[JBJ]

Hi all. I was diagnosed with gallstones, following a scan last week, and I’m now waiting on an appointment with the gallbladder team to discuss the next steps.

I’m in agony with them probably 2-3 times a week at the moment. Can’t find any particular triggers (yesterday, the pain started as I was just sitting down for dinner, so hadn’t eaten anything for over 6 hours previously. Other times, it’s happened directly after eating or drinking) and just don’t know what to do with myself when it starts.

Supposed to be driving to Wales on Monday, but I’m terrified of the pain starting whilst I’m driving, or, worse, getting to a point where I need to go to hospital whilst I’m away, leaving my non-driving teenage son stranded in our holiday accommodation. I’m seriously considering cancelling at the minute.

So, those who’ve experienced this - how long was it from getting diagnosed to actually getting the operation? I’m scared to make any plans currently as I’m frightened of it happening when I’m not at home. Supposed to be booking a holiday to Spain for March/April time, but I don’t know whether I’ll have had my gallbladder removed by then or not, so I’m stalling doing it.

Wouldn’t wish this on my worst enemy! It’s the most excruciating pain ever and it’s taken over my life.

Thanks in advance.

My mum had hers removed about 8 weeks after diagnosis just over a year ago. They nearly took it out at the point of diagnosis but as she had had a different abdominal surgery a week earlier and the decided it would be best for her to recover from that first. Her gallstones had moved to her liver and she was admitted with sepsis and jaundice with awful liver function.

It took my sister having weekly visits to a and e over 3 years with multiple admissions to be diagnosed. She was diagnosed when hers moved to her pancreas and caused acute pancreatitis. She also had sepsis on admission and was given 50:50 odds of surviving the night. They had to put a stent in her pancreas and wait for that to recover first. I think it was about 4 months wait for her gallbladder removal and that was with an admin error that resulted in her file going missing but was 15 years ago.

I had my gallbladder removed 10 years ago.The first time i had an attack i was on a weekend away,the pain was so bad i thought i was having a massive heart attack i couldnt even speak,my husband called an ambulance and just as the paramedics arrived i projectile vomited.At the hosital i had all the usual tests which came back clear.They suggested i see my GP to arrange a scan.Went to the docs but he said it was probably something i had eaten.Fast forward a year and massive attack of pain all weekend i honestly thought i would die.I went back to the surgery and saw a different doctor he knew staight away it was probably gallstones.I had a scan on the wednesday and the operation 2 weeks later.At that time i had the choice to go to a private hospital through the NHS I find it incredible that peple have to wait months for the operation.The pain from gallstones is horrendous.

I was diagnosed with gallstones in 2022.

I had intermittent flare ups, every few months at first, but I could keep on top of it with a low fat diet and buscopan.

Then last year they started to get more frequent and by October I was having them nearly constantly.

In November I ended up in hospital after one got stuck in my bile duct so they put me at the top of the list for surgery. I was originally told 4-6 weeks, then finally got a date of 26th January this year.

Throughout December I was so poorly. I could barely eat a thing, I lost 2 stone rapidly and had no energy. It was low level pain all the time so I struggled to sleep and was like a zombie. I just kept thinking ‘it’ll be over soon’
Then on 13th January I because badly jaundiced so was sent to hospital and had an MRI which found another 3 stones in my bile duct.

My op was brought forward and they hoped to clear the bile duct at the same time but my gallbladder had become so manky and I’d been leaking bile everywhere they decided that was too risky. I woke up with drains in my abdomen taking the bile out. But I felt soooo much more human. I felt well for the first time in months.

2 days later I had an ERCP. They actually found 5 stones in my bile duct.

Gallstones are an absolute cunt. One thing I’ll suggest to anyone else going through it, is be pushy, be annoying. I stupidly stayed at home even when the attacks had me on my knees, I didn’t even go the doctor after or get prescription pain relief. I just suffered for months not wanting to be a nuisance. If I’d have been more pushy I might have had it out a lot quicker.

There were women in hospital at the same time as me who admitted to being pushy and certainly hadn’t waited as long for the op as I had.

Well, I’ve just been out for dinner with friends. Managed literally one mouthful of food at about 8pm and I’m still in absolute agony now. I don’t think I’ve managed more than 500 calories a day for the last 5 days. I cannot go on like this for long!

What is the med they put you on ?

I found Solpadeine max soluble helped before i had mine removed, they are soluble co-codamol with the max OTC codeine in. That and pacing round my flat for hours in horrendous pain as t was worse when i
lay down

You need to stop eating anything with fat in ... you'll stop.being ill then. Even an egg has too much fat it. Tbe other strategy is to make yourself sick as soon as the pain starts, it worked for me for a period of time then it didn't. I paid private to have gallbladder removed as it was so bad.

I’m literally not eating! Pretty much wholemeal
toast and bananas. All I ate last night at dinner was a couple of bites of grilled salmon, a forkful of sweetcorn and 3 pieces of cucumber. The day before, it started to hurt several hours after breakfast and before I had chance to eat any of my dinner.

Hi @JBJi was diagnosed at 23 while pregnant with my eldest. I suffered as much as you but back in 1993 the advice was scant! I too was classed as too young etc however as the years went on it was found that pregnancy was also a trigger for gallstones.
literally all food seemed to cause a flare up and my best friend had the same experience.
However since then I have discovered the kind of advice in the link below. NOT eating is a massive one as this definitely caused my flare ups as I was barely eating anything. Eating little amounts often would definitely have helped I’m sure.

I ended up with pancreatitis when a gallstone got stuck - life threatening if not recognised so I was taken into hospital and stayed there until they removed my gallbladder a week later once my body had recovered enough from pancreatitis.

in your shoes I’d make a nuisance of myself at my GP and ask them to request my surgery was expedited on the basis of such frequent flares. Good luck OP. Three children, 32 years and even kidney stones later gallstones is still the worst experience of my life!
https://www.cuh.nhs.uk/patient-information/dietary-advice-for-patients-with-gallstones/

Ursodeoxycholic Acid.

I had a bad attack last night after a meagre bit of home made veg broth, rang 111 it was so bad and they advised urgent care but it was closed when I got there and didn't want to wait in a&e as typically it had passed by then.

But I'm so scared to eat now, like you been nearly 5 days of 500 calories or less. I've managed some banana today and so far so good, but seems to fall between the lines of bad enough pain to want to be seen but not bad enough or constant enough for it to be immediate ultrasound and surgery etc, dreadful isn't it! Visiting family too which doesn't help so will hope I can hold out by basically fasting till I can see my gp on Monday and beg a fast ultrasound referral.

@Imisscoffee2021sorry you’re going through this too. It’s just the worst pain ever. I managed a whole day yesterday without an attack, which was a blessed relief, but the last one was so intense, it’s left me feeling like I’ve been kicked in the stomach. Absolutely dreading the next one.

Making sure everything I ate was less than 3% fat and also less than 1% hydrogenated fat helped a lot with my attacks. It didn't get rid of them completely but it did reduce it down to every couple of weeks from every day.

I had to be very very strict with it and double check every packet. Eating tiny amounts more often helped too as larger meals also triggered it.

Why relate this "extremely rare" incident when OP is suffering.
I can never understand why people do this. How does it help?
It just worries people.

I just can’t work out a trigger at the minute. I track everything I eat on Nutracheck anyway, and rarely eat anything high in fat. I’m keeping a diary of when attacks occur and what I’ve eaten, but the one the other night helped after a couple of mouthfuls of plain steamed salmon and a tiny bit of salad. Other times it’s been after a latte, or, once, several hours after last eating (scrambled egg and wholemeal toast). It just seems so random. Hoping I find a pattern in it eventually.

No attack yesterday for the first time in almost a week. I ate porridge, a banana and a bit of tomato soup.

Feel your pain - mines out now but the advice I was given was to present to A and E (not your GP) every single time because the more you present, the stronger the case for urgent removal. It’s awful though - completely debilitating poor you x

Sympathies OP. I had gallstones many years ago in my twenties, so very painful.
I'd even swop it for childbirth!!

Had gall bladder removed and no problems since (touch wood)

I remember eating nothing but weetabix with warm water instead of milk which relieved the pain a little.
I survived on that until the operation.

I also remember laying on my mum's living room floor face down and family members taking it in turns to rub my back, even my 8 year old DS!
Just awful.

Hope you get sorted soon OP 💐

Yeah I was thinking that. My main issue with A&E is that we’re 15 miles away and I can’t drive when I’m bad. Taxis would cost an absolute fortune if I had to get one there and back every time I was in pain, plus I have physical disabilities, including a crumbling spine, and the thought of sitting on a hard plastic chair for hours seems like hell! I’m definitely going to start ringing 111 when they happen as it all gets recorded.

Yes, I said I’d rather go through labour again than this! Weetabix is a good call, as I’m struggling to get enough fibre in and I’m horrendously constipated at the minute too, which isn’t helping my general feeling of crappiness!

Was there oil on the salad? That'll do it.

Butter on the toast?

Dairy fats in the latte?

All those would trigger it for me.

Try the weetabix with warm water that I had which didn't cause pain.
My GP had suggested it, don't know where he got the idea from.

But anyway, worth a try ...

Dairy in the latte, yes, but no to the rest. Realised the latte was a stupid idea as soon as I’d drunk it!

I had my ultrasound on the NHS mid June this year, a large gallstone was found. It took 2 weeks till my GP rang to talk about it and instead of referring me to a surgeon, she said I would need further tests that she would send me for. I was quite angry and said I would go private. First consultation cost £185 I showed him the report I printed off from my NHS app, was basically told I needed gallbladder removed asap for the exact reasons you are having. He said NHS wait was around 6 months. I had it removed 10 days later, the whole cost was just under £4,000, I was out of hospital same evening. My follow up appointment 4 weeks later, I was told my gallbladder was in a very sorry state so could have erupted at any time. If you cannot afford to have the operation private, try at least to see a consultant private, as that’s usually the longest wait and they can put you on the NHS list.

https://www.healthline.com/health/gallstones#treatment

They’ve said 8-9 months for a consultation then 18-24 months for the op. That’s potentially almost 3 bloody years! I can’t go on like this for that long that’s for sure. Might have to sell the car or something and pay privately if I’m expected to wait that long.