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.

I had to take all fat out and follow the green traffic light system on foods. Salmon is quite fatty so I wouldn't have had that. I went onto chicken noodle soup in the months leading up to my op and just water to drink.

What I did do when I felt an attack start was to lean over a puffy or big footstool and jam the edge under my rib. Yes I was there a while but it made the pain bearable until it passed.

Hi op, i had my gallbladder out last year.

As well as making sure you still to very low fat (3% or less), you still need to make sure you eat. I found not eating or being really hungry also triggered attacks. Spicy food also triggered attacks for me.

I got diagnosed after experiencing extreme pain while looking after my 2 young kids alone and an ambulance was called for me. They then did a scan and found gallstones, and i got put on the surgery waitlist.

My NHS wait for surgery was 7 months, with the date being changed 4 times.

If you have already been referred ask the secretary at the GP surgery to amend the referral to one of the private hospitals who are providing care under the NHS. I had my gallbladder out last year and my appointment to see the consultant was 4 weeks after I was referred. Surgery was a couple of months after that at one of the Spire hospitals. You can check out the waiting times of your local hospitals on this website:
My Planned Care NHS

Unfortunately, I was in a Green King pub and there was literally nothing else that wasn’t coated in batter, cheese etc, other than salmon or steak and I figured the steak was worse! They didn’t even have a soup starter - it was all breaded mushrooms etc - else I’d have gone for that. Lesson learned!

That is an excellent idea, I really hope OP does this and it works! Gallbladder pain is the pits.

I’m going to speak to the doctor on Monday about this, as the waiting times are crazy at my local hospital.

If the GP has already referred you, you can just speak to the secretary. The Dr has made the decision to refer so the secretary can just amend the referral to a local private provider.

Which secretary? I’m not aware of anyone at the surgery with that title, just the practice manager and receptionists. I’m seeing the GP anyway on Monday.

Oramorph is the only thing that touched my pain. I think it was about 5 months it took to get the surgery. Sympathies, it’s really rotten. By the end everything caused an attack, I was 5 1/2 stone and calling an ambulance regularly as I’d passed out with the pain. so I understand how terrible it is

Gosh that sounds dreadful. I’m not good with morphine unfortunately, it makes me hallucinate, itch, shake and vomit! Although that might be a distraction from the crippling stomach cramp!

It may be a receptionist who sends all the referrals via Choose and Book (now it's called ERS) if it's a small surgery.

Same but just before the surgery I didn’t have much choice. It’s horrible but I think more women have to deal with it rather than men. Probably why it’s not a hot topic medically (and also why I was misdiagnosed with anxiety despite not feeling anxious!)
if you can afford private I would, or see if it settle for a bit (mine settled for a few months and then ramped up just before the surgery )

Yeah it’s a very small village surgery. I’ll speak to them on Monday, thanks.

Hopefully you can get your referral changed and seen at a hospital sooner. The pain is horrendous isn't it.

It’s the worst thing I’ve ever experienced, including childbirth and dry socket after an extraction! It’s not just the attacks, it’s how weak and crap I feel after them as well. Stomach currently feels like I’ve got pulled muscles after a bad attack the other night and I’m struggling getting up and down, more than usual, as I’m a bit doddery at the best of times!

I clicked on this thread because I’m having my gallbladder removed on Monday. I’m absolutely horrified to hear about the waiting times that people are experiencing and the pain being suffered in the meantime. Luckily, I have private health cover but it really shows what a two tier system we have now and the horrific pressure that the NHS is under. I had my first – and only – attack at the end of September, spent the night in A&E and, once I had my ultrasound the following day and gallstones were diagnosed, pretty much the first question the surgical team Nurse asked me was whether I had private health insurance. She said I would see the same consultant except it would be an up to 4 month wait for the NHS appointment and then 12 months on the waiting list afterwards for surgery. Instead, I’ve now seen the consultant privately, been given a date, had the pre op tests and get it out next week. I keep thinking about cancelling my very expensive insurance (no longer work) but reading these awful stories, maybe not!

DH was diagnosed in early October 2002, he had his gallbladder removed the week before Christmas so 2½ months. He wasn't a straightforward case though as he'd been hospitalised due to infection and they did the op as soon as the inflammation had dropped. I don't think it's usually as quick for an uncomplicated case and waiting lists have lengthened in the past year or two.

I got a very rare complication as well called sphincter of Oddi dysfunction, shortened to SOD, which is exactly what it is. The trigger is opiates like codeine, and again, symptoms are much the same as biliary colic though a lot more short-lived. I've now had more episodes due to taking co-codamol than I did of real colic before I had my chole.

Trouble is, I get migraines and am on another drug which means I can't take triptans like Imigran for those so I'm back to co-codamol... it's a bit of, well, a SOD really!

Thankfully I can minimise the chance of getting the reaction by eating and drinking stuff with a fatty component before I take the painkillers. Good excuse for chocolate!

What is your problem? There's always one ...

This is exactly right. I remember after a week of ever increasing attacks I decided to eat something that I knew would trigger the pain from hell and DH took me to A&E by which time I could barely stand so they took me straight into a side room. The attack subsided once I had vomited.

It was only a few weeks after this that I had my cholecystectomy.

I've never seen anyone else with it! I'm on morphine for a spinal injury and learned quickly to always eat with it and keep an emergency long life milkshake in the fridge. It's enough to stop an attack from taking hold if I drink it at the first niggle.

I didn't mention it as a side effect earlier since it's so rare and only affects people who need opiates post op. SOD really is the right name for it though.

I had a massive panic the first time I took my morphine after my op thinking it hadn't worked but figured it out through experimenting a bit and now I've not messed up and caused an attack in a few years.

Hello Wheelie! I have told my story in several of these threads but you're the first person I've 'met' with it as well! <Files the long-life milkshake trick for future reference>.
Just eating stuff doesn't help - I keep a box of kitkats on hand but still have to go make a cup of tea or something. Assuming the kitkats haven't vanished into DS in the meantime 😁