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Original poster

Gallstones- At my wits end

37 replies

Mama12345678910 · 21/01/2022 23:17

Hi all,

So I was diagnosed with gallstones around 6 months ago (although suffered for 2+ years) and been put on the waiting list for surgery. I still am yet to receive a date for surgery due to the back logs but I don’t know how much more of this I can take.

I currently have an infection in my gallbladder again after only having had one just before Christmas. Doctors have put me on anti sickness tablets, codeine and paracetamol, antibiotics and Buscopan. I’ve changed my diet to avoid fatty foods but this flare up started at 10pm last night after a chicken salad!

Anyone who has experienced it will know how unmanageable the pain is. I’m regularly on all 4’s on the bathroom floor just trying to find some relief. My sickness record at work is being impacted as there is no way I can work with the pain and because the attacks are so random my absences are a day/ couple of days here and there. My works policy is to have a sickness meeting with HR after 2 instances of absence no matter how long so I know I’m due one of those but I don’t know what else to do. I can’t get off the bathroom floor or stop being sick when having an attack never mind work.

Is there anyone in or has been in the same position? It’s really starting to bring my mood down and I feel like I’m becoming depressed. I feel like a burden having to cancel plans last minute, rely on people to help with looking after my little one and being unreliable at work, but until my operation I don’t know what else to do.

Any advice would be appreciated.

OP posts:

Delphigirl · 21/01/2022 23:24

I don’t have advice, just sympathy. The pain is like nothing else. Waiting times were awful when I had mine out 15 months ago - I was lucky enough to have private healthcare so used that, and I still had to wait 6 months. But I don’t think I had it quite as bad as you because after two all night massive attacks I was so terrified of having another that I totally cut almost all fat out of my diet and avoided any large attacks thereafter. I would not have had an attack after a chicken salad unless I ate chicken skin or mayonnaise or something. I also could tolerate small amounts of olive oil which helped.
I think you just need to press them for an operation every time you see them - emphasise repeated infections, job at risk, small children - and hope you get prioritised for surgery. But that will still be a long wait I know.

Hawkmoth · 21/01/2022 23:27

I got a loan an paid for private surgery at the point where it made economic sense. I am disgusted that it came to that, but I had no choice. The money I am paying back now isn't even half what I was losing not able to work, in bed, concentrating on breathing, on all the painkillers I could take.

alakens · 21/01/2022 23:30

Hi OP, could you go back to your GP and ask for an urgent referral? I had some very serious side effects from gall stones in Sept and had mine out in Nov. It actually should have been sooner but even my urgent referral was delayed by covid for almost a month. I think normal waiting times are about a year for non urgent cases.

Do you have any symptoms beside the pain? I had severe jaundice and itching which is why I was treated so urgently.

Original poster

Mama12345678910 · 21/01/2022 23:30

Thank you for your reply! I’ve dealt with IBS my whole life so am quite accustomed to stomach pain but this pain is like nothing else. I used to be able to pinpoint it to specific foods however now there’s no rhyme or reason to it. It’s been going on over 24 hours this attack. It’ll ease off for a few hours then come back for anywhere between an hour to 5. Every time I’m having an attack I’m ringing up to report it and get more painkillers so it’s on my record. I’ve stayed away from A and E (although very nearly ended up there just before Christmas) as I know how stretched they are but part of me is thinking shall I just go and try and get some stronger meds and an earlier op as who knows how much longer it’s going to be. It’s like there’s no end in sight

OP posts:

Original poster

Mama12345678910 · 21/01/2022 23:33

Hi hawkmoth. Unfortunately a load isn’t an option for me. I’m already paying off debts etc so money is tight. Alakens I was at the GP today and he says I am highest priority for an op (been waiting 6 months already) and the only people higher are those that get rushed to A and E and need it out straight away. I have the pain, vomiting, diarrhoea, sweating and itching. I can’t even keep water down when it’s really bad so have to watch I don’t become dehydrated as that’s why I nearly ended up in hospital at Christmas

OP posts:

Mychitchatdays · 21/01/2022 23:35

My dB has been on the waiting list for nearly four years now. Even his "safe" foods have started attacks. He ends up in A&E they sort him out and send him home to wait again.

RandomMess · 21/01/2022 23:43

Sounds like you need to go to A&E because can't an infection turn into something even more serious- sorry can't think of the name.

alakens · 21/01/2022 23:44

@Mama12345678910

I'd go to A&E if I was you. The emergency cases obviously get them taken out straight away but you can also have an urgent referral which is 4-6 weeks. Mine ended up being 9 weeks due to covid but still much quicker than 6 months.

I'd had the pain for 6 years undiagnosed as they thought I was too young to have gallstones so A&E just sent me away with painkillers each time. However after my attack in Sept I then developed additional symptoms of jaundice, vomiting and all over intense itching. One of the stones had blocked my bile duct and that's when they finally diagnosed it and I was referred for the urgent surgery once the blockage was cleared. If you are having pain going on for over 24 hours you may well have the same thing happening. At A&E they did a blood test when I mentioned the itching and as soon as I got my liver results (which were bad) I was sent off for loads of tests the next day and then very quickly into treatment. I hope you can get it sorted sooner, it really is the illest I've ever felt and the pain is the worst thing I've experienced.

RandomMess · 21/01/2022 23:44

Acute Cholecystitis

HalfShrunkMoreToGo · 21/01/2022 23:45

Have you tried going to A&E?

I ended up there in September, in absolute agony and vomiting. Got morphine which was wonderful, blood tests showed an infection so I went onto IV antibiotics. They kept me in, which meant I got the good pain meds every 4 hours and after 3 days of IV antibiotics they realised that the infection was just not going to shift so I was taken into surgery and the gallbladder got taken out.

Turned out I had one absolutely massive stone which had blocked the bile duct completely and nothing was going to make it shift by itself, so the gallbladder and all round it had developed a delightful loud of gunk and nastiness so I had to stay in another few days for more antibiotics and a drain to clear out the gunk.

Even if you don't end up having it taken out there and then, the good meds are worth the visit. Honestly oramorph is a fucking miracle when you're dealing with gallstone pain.

Original poster

Mama12345678910 · 21/01/2022 23:54

I haven’t gone to A&E as I’ve been just about to go in the ost and symptoms have eased off. I too was classed as ‘too young’ (I’m 24) which is why it took so long despite me telling them I thought it was gallstones as I’d researched and had every symptom going).

It’s been flaring and easing all day, will go to an achey pain around abdomen and back when it eases then full blown horrendous pain in abdomen and shoulder blade when it flares which it’s starting to do again. I just want some relief. Tried 111 and been on the phone to them for 40 minutes so far with no answer

OP posts:

alakens · 21/01/2022 23:57

Also started in my 20s OP, didn't get the surgery until I was 30. I'd go to A&E, even if they can't speed up the surgery they could give you better pain relief.

pinkfluffybunny · 22/01/2022 00:00

I was 22 when I had my biggest gall stone flare up. It was nearing the 24hr mark. I thought I was going to die, I was in that much pain.

My dad drove me straight to A&E where they found a stone in the bile duct. I had my gall bladder removed pretty swiftly as they said if they had waited I could have had serious complications from infection.

The pain is horrendous. The worst pain ever, and I've had 4 children. You have my every sympathy.

Please don't wait too much longer to seek medical help.

RandomMess · 22/01/2022 00:01

A&E for some morphine and assessment

melissasummerfield · 22/01/2022 00:02

Another recommendation to attend a&e, i suffered for years and then after a severe episode i was referred by an a&e Doctor and had the surgery within months.

Houseofvelour · 22/01/2022 00:03

The more noise you make to the drs the quicker they'll get things done.
I was having constant attacks and lost so much weight in a very short space of time. I was in and out of hospital multiple times a week on IV morphine and had surgery within 3 months of my first attack.
They put me down for emergency surgery as the surgeon decided I couldn't keep living like this.

Go to the hospital for pain relief whenever you have attacks and hopefully you'll get your surgery sooner.
I really hope this gets sorted quickly for you. Gallstones are the worst pain I've ever felt and I wouldn't wish it on anyone.

Kirstyr455 · 22/01/2022 00:19

I have had my gallbladder removed and you are right the pain is unbelievable. My friend is currently in hospital after presenting with a gallbladder infection. She is now in ICU with sepsis and is very scared indeed. Please don't let them fob you off like this.

lovingtheheat · 22/01/2022 00:23

Until this is sorted make a food diary. Be very detailed. It helped me pinpoint unusual triggers Which I was then able to avoid pending removal.

Cottagepieandpeas · 22/01/2022 00:30

No advice OP just sympathy. The pain is without doubt the worst I’ve ever experienced.

HerculesMulligan · 22/01/2022 00:43

I had gallstone pain and then x4 bouts of obstructive pancreatitis during pregnancy caused by gallstones. The gallstone pain is horrible, the pancreatic pain is terrifying. My gallstone pain was on the right underneath my bra hand, but my pancreatic pain shifted to the middle of my body, above my navel. Keep an eye on where yours is as you wait for your op, because obstructive pancreatitis is not to be messed with.

Einszwei · 22/01/2022 03:35

I had my gallbladder out at the same age. It was so frustrating to be fobbed off constantly due to my age and gender. The pain is horrendous and you have my sympathies.

Definitely go to A&E next time you have a severe attack/haven't been able to eat or drink for awhile. I would also advise taking a relative who can help advocate for you.

Roselilly36 · 22/01/2022 06:43

You have my every sympathy OP, it’s absolutely agony when you get an attack I know.

I had my gall bladder removed many years ago, such a relief. I was having regular attacks. Have they given you any idea of the wait for surgery on NHS? I had a private plan so luckily I had my surgery quickly. I think gallbladder surgery is one of the most routine general surgeries.

The only thing you can do in the meantime is what you are doing, follow a Stone Age diet to prevent an attack.

Good luck, you will be fine once you have the surgery

ballsdeep · 22/01/2022 06:52

I'd go to a and e. I had an infection in mine and I went to a and e and the surgeon pushed mine to the top of the list. I was waiting 4 months but the pain was horrific. I spent most of it off my fave on strong pain killers. You have my sympathy.

3luckystars · 22/01/2022 06:57

I’d go to a and e too. My friend had this and one of the gallstones had moved and was in the wrong place, blocking something and the pain went on much longer than one of her normal attacks. She was in absolute agony. You need to go to the hospital.

jessycake · 22/01/2022 09:02

If the pain is lasting several hours it should always be checked for complications , my daughters consultant said , he told her off for leaving it.

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