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.

It's unlikely to be out by March on an NHS time frame. You could ask your GP about Choose and Book ( I think it's called) which can create an NHS referral to the private sector. I got seen within a couple of months from diagnosis with this.

I know what you mean about the fear of going anywhere. It's debilitating.

Thanks. I suspected I was being a bit optimistic hoping it’d be done quickly!

The only people I know who’ve had theirs removed were both done as an emergency when it became infected, which is exactly what scares me about not being at home! But equally, I can’t just sit at home for the next god knows how long just in case.

I’ll speak to my GP about seeing if I can get it done quicker that way, didn’t know that was a thing.

If the stones move into somewhere and get stuck it’s bloody sore. Until they pass through or unstick themselves and go back where they came from.
If they dont move around it’s fine until a fatty meal.

I went for acupuncture and Ive not had any issues since. So fingers crossed the stones are behaving themselves now. Whether that’s coincidence or an acupuncture I don’t know.

I might give acupuncture a try. Willing to try anything at the minute! I’m quite happy to co-exist with them, so long as the pain stops.

Once you start getting symptoms as often as you are, the gallbladder needs to go!

My stone was too big to go anywhere and I was still in agony.

You have my sympathy, OP. I suffered from Gallstones from the age of 23 (I'm now 62) and was considered too young and too slim (the fair, fat and forty idiom). Very weirdly, I used to get attacks around every 7 years and was initially diagnosed with having a narrow bile duct which went into muscle spasms, hence the pain. I found that once I vomited, the pain would cease ... until next time.

This went on until around 2001 when I was formally diagnosed with gallstones and an operation was scheduled, the day after 9/11, to remove my gallbladder by keyhole surgery which I recovered from really quickly.

In around 2006 I suddenly had another attack of the exact same pain over days and weeks. I went to the docs who said it can't possibly be gallstones as you haven't got a gallbladder abd they decided it was an ulcer, probably brought on by stress as I'd recently started a new job. I was put on meds for this which, predictably achieved the square root of zero until another doctor at the same practice decided to order some blood tests, the results of which showed that my liver function count was sky high. I was admitted to hospital where they found that another stone had formed and was stuck in my bile duct. It should have been an easy procedure to flush it out by ERCP but this didn't work and I had to be opened up which they did and they also widened my bile duct so that, hopefully, no further stones can get stuck.

Apart from a large scar, all was going well for another 3 years then it happened again. This time they were able to flush it out in an ERCP procedure and, planning on going back to work after the weekend, I felt the pain start again, managed to reach the bathroom before hemhoraging blood from internal bleeding. I was blue lighted to hospital and needed a triple blood transfusion.

It was then concluded that I obviously have a strong propensity to develop gallstones so I have been on medication since 2008 to prevent them forming which has worked like a dream and I've had no further problems.

Yes, my story is extreme but VERY RARE, so don't be afraid. In 99.9% of cases a gallbladder removal works first time but I was the very unlucky 0.001%.

Good luck and I hope this helps but go to your GP if it continues. I'm sure you already know this but eating fatty or greasy foods exacerbates the condition too.

Good luck and hope you feel better and get sorted really soon x

I’m more than happy for it to go, but dreading a ridiculously long wait whilst in agony! Just spoken to the hospital and looking at an 8-9 month wait for an appointment to discuss, then potentially 18-24 months after that before it’s removed, unless it becomes infected/blocked bile duct, when it’ll be done as an emergency.

I’m going to talk to my GP and see if there are any options for it to be sped up a bit, as I cannot deal with this pain for that long.

Fabulous! So you can have your gallbladder removed and still get the same symptoms? That’s a cheery thought 🤣

It was over a year from diagnosis to operation for me. I was getting hospitalised with gallbladder infections every few weeks and spending 2-5 days on the ward each time so I was very glad to be rid of it by the time it came out.

Nothing worked to treat the pain apart from going to a&e to get IV morphine. They told me to come in every time since so many of my attacks were being caused by infections and I was kept in after roughly half of my attacks.

I'd go in each time rather than suffering from home as it did help get mine brought forward - it was meant to be over 2 years away. Plus there is no point going through all that pain without help for no reason.

Once it was out I recovered really quickly and don't have any lasting side effects. It's been over 10 years now. I can eat what I want when I want.

Like I've said, it is EXTREMELY rare to suffer symptoms after a cholecystectomy. I was just very, very unlucky.

4 months and I suffered a lot, though unfortunately later discovered to have permanent damage to my pancreas so surgery wasn’t the end of it. That’s uncommon, but in my experience be on at them for surgery as those little stones sure can cause a lot of misery. I later had part of my pancreas removed.

This is definitely where you mention Choose and Book!

Or much worse symptoms, unfortunately as was my case. It is a depressing thought, but as pp said, most are ok. What you’ve been quoted is a long time, especially if you’re getting attacks as they are incredibly painful.

Look, I am sorry if this is impossible, I’m just so sorry to hear you’re in pain, I’ve been there with gallstones and am in horror at the thought of you being in this pain for such a long time. Can you afford to go private? It would then be out in weeks.

I had mine out over 18 months ago privately, and it was brilliant. I had suffered for years, and looking back I don’t know how I kept going.

Following as I highly suspect I have them, had a weird flare up and called 111 thinking incase having a heart attack last month, agony and couldnt keep still with pain, happened again two days ago and since then been flaring again, so uncomfortable.

The consultant tried to talk me out of surgery but I insisted, took about 3 months on the waiting list.

Unfortunately, private isn’t an option at the minute, unless it’s very cheap, which I suspect it isn’t!

Yes that sounds about right. Mine starts with a kind of uncomfortably full feeling, then spreads to a horrific kind of cramp like pain in the very top of my stomach and centre of my chest, radiating into my right shoulder/arm and right round into my back. It stays at high intensity for a couple of hours usually before starting to ease a bit, then comes in spasms for another hour or so, getting gradually further apart. Worth getting scanned to confirm what it is.

Waited nine months, rang the scheduling lady every now and then and think I got squeezed in. Operation absolutely fine, back to normal within 10 days.no problems since.

I was "lucky", as I didn't know I had gallstones until admitted to hospital via A&E. I also had pancreatitis and jaundice at the same time, so I was a bit unwell. They kept me in for nearly a week before removing my gallbladder - the surgeon was tempted to wait, but I begged him to do the op!
I wouldn't have wanted to drive in that time, but I suspect there are plenty of other people who have had to live with it for a period of time. Any chance of going private for the surgery?

I’m sorry this is happening to you. In that case, just shout from the rooftops to anyone medical who will listen how painful it is and how it is impacting your quality of life and you can’t go on. Tell them in words of one syllable that you need this to be treated as an urgent case, and ask for their confirmation that they will do so.

No idea on nhs wait times as I went private for mine.

like you I couldn’t find anytime specific that caused a flare up lots of people are successful with a very plain low fat diet.

What I found helped after being hospitalised during pregnancy for cholecystitis was as soon as an attack started take an anti sickness otherwise I’d be sick from the pain and couldn’t keep the tablets down plus a strong painkiller like cocodamol and buscopan I also took omeprazole as they hadn’t ruled out ulcers due to my pain also being central right in my rib cage. Also lying on your left hand side with your right hand over your head helps .

I went to A&E every time I had the pain. Took about 6 months from first attack to removal. Voltarol suppositories saved my sanity!

Yes it’s made me sick with the pain a few times. I’ve just ordered some Buscopan to see if that helps. Good tip about laying on the left as I’ve struggled to find a position I’m even vaguely comfortable in, so I’ll try that.

Got to have the arm up as well I believe is something to do with creating more space for stones to move