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 went to my GP immediately after spending overnight in A & E with pain & sickness for the first time to get a referral under NHS choose & book, I already knew I had gallstones through an abdominal ultrasound I'd had for gynae problems a year earlier, this was the first confirmed attack though I suspected I had other attacks after the birth of my son 6 years earlier I hadn't contacted my GP & they stopped after a couple of months. I saw a consultant within a couple of weeks at my local private hospital on the NHS. He arranged an MRI which I waited about 4 weeks for to confirm if I had any stones in my bile duct, I was having attacks about every 2-3 days & managed with dihydracodeine & anti sickness tablets plus peppermint cordial & soda water to settle my digestion. There was no pattern of which foods affected me, I could eat something one day & it not affect me & a day later leave me on my knees on the stairs with a hot water bottle & a bucket which was the only place I could get comfortable. Once I'd had the MRI my consultant gave me a date for my op & I went in at lunchtime, theatre about 2.00pm back in bed by 4.00pm & at home watching soaps by 7.00pm. I was able to eat normally by the next day except for the diarrhoea which I had for about 6 months until my digestive system settled down to a normal diet, I drove within 2 days & was doing most things except lifting within a week.

Do not overuse antacids and PPIs like omeprazole

Are you actually serious? This is ridiculous advice, especially as ppi , anti-spasmodic, anti-emetic, pain relief are prescribed short-term for cholecystitis, including those asked to wait up to six months for surgery. Your advice is actually dangerous, including vastly increasing the rate of cholecystitis attacks/biliary colic in those pre-surgery.

With respect @SimplySteve, you are sort of making the thread all about you. Yes, your experience is valid, as are some of your recommendations, but no more than any others on this thread, yet you have given others some very scathing, dismissive responses as though you are are the leading authority on the issue, and it's really quite irritating.

In your last reply, you are ridiculing a poster for advising people not to OVER use a particular drug. By definition, since when is it bad advice to OVER use anything? That is always going to be sound advice no matter what it applies to .

I think having medical education

What do you mean by this? Are you a qualified doctor? If so, surely you are aware that giving any sort of medical advice based on a few posts on an Internet forum is bad practice? Especially when the advice and recommendations appears to be based on your own subjective experience of illness and not actual medical or NICE guidelines?

You may mean well, but are coming across as pompous and really quite rude.

Cool. I'm out.

I had this in 2004. Yours and others experiences mirror my own. Pregnancy started my attacks off. When ds was 6 weeks old I had an attack so severe my neighbour called the police . Each time I'd end up in A&E waiting for morphine/pethidine. I'd be in floods of tears at having to leave my pfb. I was told then that I wouldn't be offered surgery unless it was life and death. During my 6th admission (and after a nurse calling me stupid in regards to my diet and her refusal to believe it was triggered by a cup of tea with a dash of skimmed milk) I told the doctor I felt like killing myself. I had to quit breast feeding ds and he was passed around family members at such a young age as dh had to work. Only then did I receive a visit from a surgeon. I was scheduled for the op the following week but that was cancelled just as they were about to put me under. I cried all day with despair and disappointment. In fact just as I was preparing to leave that same nurse brought me a tuna salad for lunch. "This is the kind of food you should be eating."
A few minutes after eating I was hit by the worst one yet. It felt like my insides were being shredded. I was throwing up so much they put me on iv fluids straightaway. Dh told me that the nurse avoided a bit of a telling off from the doctor who came to give me morphine. They were discussing my attack when she said I'd been told to eat a tuna salad to which the doctor said " Which fool gave a can't-remember -the -fancy -word -ic patient oily fish to eat?" She stayed silent.
I had my op with no issues the week after. The first thing I did when I got home was eat a burger and fries from Burger King. Not the slightest bit of fat had passed my lips in 4 months. I still braced myself for the onslaught of pain afterwards though. The relief was immense.

OP no-one should be left without the option of gallbladder removal, as it's the only way of preventing further attacks.

As PP have said, cholecystitis means your Gb is inflamed and it's common to be treated for that first, as surgery is more risky if you have inflammation and / or infection. But you should still be scheduled for surgery. I wonder if this is still the intention of your consultant as you are to go back in 2 months?

I assume you had an ultrasound scan to determine the thickening / gallstones and so you have a firm diagnosis and symptoms of repeated attacks, you should be on the list. If you aren't confident or experienced dealing with consultants, take someone with you who is. Make sure your GP knows you expect to be progressed. Don't let anyone ignore you.

There's no such thing as a no-fat diet but fat triggers Gb attacks in some, so you're advised to cut down, and importantly to not overeat at one sitting. Some foods also can trigger spasm (as as well as reflux) these include coffee, tomatoes, chocolate and red meats. While you're waiting for surgery, you should adjust your diet to suit your own triggers. Pre-removal, codeine is often prescribed but after surgery it can trigger attacks which feel like the Gb pain (due to sending a sphincter which regulates bile flow into spasm). Buscopan, an anti-spasmodic, often helps with attacks.

FWIW I had my gallbladder removed after 2 attacks and few other symptoms, it was 12 weeks from scan to surgery. All the people I know who have had the same symptoms (all middle-aged women) have had theirs removed in a similar timescale. I'm in Scotland for info. Keep on persisting, you absolutely don't have to live like this.

That's really interesting ByGaslight; I'm also in Scotland so I wonder if our treatment pathway is different.

Also

"Pre-removal, codeine is often prescribed but after surgery it can trigger attacks which feel like the Gb pain"
This makes so much sense, I had a couple of what felt like milder GB attacks after my surgery when I was still taking prescribed pain relief. That prescribed pain relief was codeine! Didn't make the connection until now but will keep an eye on it if I have to take it again.

And thats probably why i cant take co codamol anymore.

Sharon thats terrible On one of my many trips to A and E a nurse came and slammed the door shut as my screaming and crying was disturbing other patients.

During one hospital stay where i was kept in to be stabilised i was made to eat a steak pie and some kind of crumble with custard before i could be discharged.

I told them no i cant but they said i should

I was back in A and E screaming less than 3 hours later.

No one has mentioned Ometprazole. I think that is how you spell it. It stops the gall bladder contracting. If you have gall stones, when you eat fat the gall bladder contracts and so you get pain.

I have been on Omeprazole for years and still ended up with GB disease which intensified in July and my GB was removed at the end of September as my liver enzymes were shooting up after every attack.

Buscopan can help, but me the only thing I could towards the end was to take Tramadol 4x daily to help me cope with the attacks when they came along. My attacks were vicious but mercifully short, lasting about 30-40mins.

I still take Omeprazole for chronic heartburn, but it certainly did nothing for my GB issues.

Helena I managed to hobble to the toilet. Yellow fluid was gushing from both ends. This nurse comes banging on the door telling me to put my fag out. I'm sat on the loo. I have a cardboard bowl on my lap and also holding my drip off the floor. I shout that I'm not smoking but the cheeky fucker opens the door with a coin or key. They see I'm not smoking but continue to berate me for doing so . At this point I lose my rag and scream "How the fuck can I be smoking? I've got liquid gushing from both ends! Search me. Where are my fags and lighter?" He stood there arms crossed and says I'm not stupid I can smell it. Then a patient opens the next cubicle door and goes " Fuckin' ell mate. Leave her alone. Its me." So rather than now tell this bloke who has been in the ladies toilets to stop smoking he just goes "Oh right". Then fucks off. With treatment like that from 2 seperate nurses I usrd to be petrified of going in again and again. Another nurse wouldnt let me have an extra blanket as she felt warm so that meant I couldn't be cold. Makes sense. The first nurse based her judgement on me having a box of chocolates in my locker. They were a gift and unopened. I gave them to a lovely old lady across from me when I was discharged. The third or fourth time I went back in. She told me that having boxes of Roses won't help my pain. Dh looked at her and went "Eh? What Roses?!" I said the ones Steph brought in when she visited that time.I was always told nhs staff don't remember patients minor details etc. I just think she didn't like me. It always felt weird and tense on the ward when she was there.

I feel for anyone who suffers with this. Life is put on hold when you have it.

I was admitted for 2 weeks with acute cholecystitis and a spiking temperature, and turned out to have an enormous abscess in the gall bladder as well as a lot of stones, so it wasn't really in working condition.

I was also told to eat no fat to avoid pain as much as possible - when you eat fat, your gall bladder contracts to squeeze bile into the stomach to digest it, and it's the contractions that cause the awful pain.

Despite having been so ill, I had to wait nearly 6 months in the end, because I couldn't take up the first operation date that was offered within the 18 week waiting time.

I found the no fat diet really tedious, but while I didn't avoid all pain, I didn't have another serious flare up. Gall bladder pain is awful. I tended to take cocodamol if it was bothering me, ask your GP about this or other pain relief, and take it if you're in pain.

Nobody ever mentioned having the gall bladder out within a week to me - the consultant did say 'as soon as possible', but it was months rather than weeks as I've said above. In fact, they like the gall bladder to be fairly calm when they operate.

a nurse came and slammed the door shut as my screaming and crying was disturbing other patients.

TBF @HelenaDove I as nurse would also have shut the door, as I would have a duty to all my patients which would include trying to prevent them from overhearing things that could upset them.

That said, I hear you - this sort of pain is a screaming agony of a pain, in fact a specialist once told me that biliary colic is pretty much the worst pain you can have, or one of them at least. Though still one I was once advised by 111 to leave for 9 hours until the GP opened the next morning (it turned out no ambulances were available).

PrickWhittington I understand

It was just impossible for me to stay quiet

Years later in Feb 2008 i had a kidney infection That was painful , with the most horrible watery diarrheoa and i also lost conciousness then too It was awful AND very painful but not as bad as the gallstones so no loud screaming.

I agree @HelenaDove - gallstone pain really is unbearable. I don’t think I actually screamed but I did make a lot of fuss, ‘arrggghed’ for a long time and begged for pain relief! I’ll never forget the feeling of relief when the IV morphine finally started to kick in and help to relieve the pain. However, it took a large dose of pethifine as well to fully alleviate it the 2nd time. And by the third attack, even they weren’t enough so they had to operate. It’s an awful thing to go through though especially when there is a delay in giving any pain relief. I remember one time in a and e - I was doubled up in agony, being violently sick and almost delerious with the pain, yet the triage nurse called a man with a tiny cut to his head before me 😡. Even he told her I needed to be seen first!

I had my gallbladder out while pregnant.the pain was worse than childbirth...I was told my gallstones were caused by loosing weight to fast..I find it worrying that in the paper at the moment that 800 calories fast diet is being recommended as the only way to loose weight....I look at that article and think anyone would be mad to follow it because that low calories can cause gallstones.my doctor told me in most cases it's caused by to fast weight loss.

Adding my story. Different country, different (still free at point of contact with secondary care) health system.

Presented to ED with severe pain, classic location and pattern for biliary colic. Immediately given 10mg IV morphine, scanned, presence of gallstone “gravel” confirmed, admitted to the surgical ward with plan for acute cholecystectomy later that day (Tuesday).

Symptoms settled and acute list was full of people needing emergency caesareans so I was allowed out on leave with pain relief and instructions to come back if it worsened. Gall bladder out 3 days later, in hospital overnight and off work for 9 days after.

I had a couple of episodes of pain since, relieved with buscopan (& I take omeprazole regularly anyway). Now I eat an entirely normal diet, no symptoms whatsoever for several years.

It’s routine here to remove gallbladders on presentation with pain and confirmed stones as it’s surgically easier to remove them “hot” than waiting for the inflammation to settle down, by which time there may be internal scarring and it may make surgery more difficult. Or so my surgical colleagues tell me when they book acute lap cholecystectomy cases for Saturday mornings.