To expect not to be left in constant pain

[Beans074]

A family member was diagnosed with gall stones and a blocked bile duct 3 weeks ago. She became jaundiced and was in continuous pain which was not managed by strong opoids.

She had a procedure to remove the stone which was blocking the bile duct and began to feel better. Since then, she has been admitted to hospital three times due to severe pain and vomiting.

Each time she has been admitted to hospital they have sent her home and told to continue with the painkillers. Doctors have confirmed she will need her gallbladder removed but can't say when it will be done.

We are now on day 5 of this attack with absolutely no let up. AIBU to think that with continuous unmanageable pain for so long, they can't just leave her like this?

I do appreciate there are lots of people who are suffering with life threatening conditions and know this is not on the same scale, but I feel like she is being left to suffer in severe agonising pain with no end in sight.

Would appreciate anyone's advice or experience of this kind of situation.

This is really awful and I can only offer sympathy.

Can you contact PALS and make a complaint? I agree, nobody should be left in constant pain, so keep advocating for her, as she is in no condition to do it for herself.

I guess to some degree it depends on how severe the pain actually is OP. For example, I am on a very high dose of morphine each day, together with other pain killing drugs, and still live with so much pain that I have to spend a lot of days in bed. I've been doing this now for years as there's nothing else that can be done for me. Of course it's awful that she's in constant pain, but sadly this seems to be the way of things with the NHS in the mess that it is currently.

I do feel for her though, as no one wants to live with that level of pain, however hopefully they will do something to sort it out for her soon. I guess all you can do is keep making a fuss, and taking her back to hospital when it's all too much, does anyone actually advocate with the doctors for her when she's in hospital, ie, are you there, telling the doctors that this level of pain can't be allowed to go on, and explaining just how bad it is on an hourly basis, etc., or does she just sit back and follow instructions because she's afraid to speak up for herself and doesn't want to be a nuisance?

My parents refused to move me from the hospital when a spinal fusion was needed start of last year. My dad said what care package are you sending her home with and you do realise she doesn’t live with us. Suddenly the operation was next day unlike the 6 months waiting list anticipated. I dread to think where I’d be if it wasn’t for my parents still around at the time.

18 months on my PIP application is being looked at. Left with two hospital specialisms saying we don’t know/can’t be bothered to let’s assume. I’ve had to accept I’ll never learn what the leftover unbeatable symptom was I personally think I’ve come close but have no definitive answer. At first all those months ago I was treated as if I was going mad so I’ll never thank the medical profession.

Thanks for the replies, I'm sorry to hear of others being in pain and do appreciate that there are limits to what can be done.
Ended up getting an appointment at out of hours and she has been given diclofenac to take on top of the other medications.
I have been with her on some occasions but due having my own two kids and working full time, other family members have been there at other times.
Hoping this helps but I will keep pushing if not. Thank you all again, hoping to get some sleep 😴

Have a relative who is suffering in similar way.

food is a big factor in the pain, avoiding some types of food will help to some degree

Oh jeez this brought back memories. Has she had her gallbladder out completely? I had gallstones and till my operation I lived on morphine as the pain and attacks were frequent and hospitalised me. Following my surgery for a period of 6 months I’d say I still got attacks and vomited constantly. However it did go away and 6 years down the line I’m fine now.

Unfortunately, the NHS does not care about leaving people in great amounts of pain.

It's an awful state of affairs.

This brings back the most awful memories for me too. I was hospitalised with pancreatitis caused by gall stones. It was the worst pain I've ever felt, and I've had three kids and live with severe osteoarthritis.
I was treated for the pancreatitits, then eventually had 4 stones removed from my bile duct. I was hospitalised a week later with a gall bladder infection; the pain was very similar to the pancreatitis. I was violently sick continuously both times.,
A few months later I had my gallbladder out, and the consultant said it was one off the worst he'd seen and I had an abscess too.
I've had no pain since, but also cannot drink alcohol since the pancreatitis. I'm telling you all this so you know I absolutely can understand how she feels and hugely empathise.
The only thing I can suggest is, as a pp said, to go to pals, and also ring the consultant's (one she was under in the hospital) secretary and ask where she is on the waiting list. I know a lot of people who have been hospitalised due to cholecystitis, and it must cost the NHS a fortune. Sending my best wishes

She needs to ask her doctor for an NHS Choose & Book referral to her nearest private hospital, she will be seen quicker & get her operation done. When I was referred from my first appointment to operation was less than 6 weeks. My exh has gallstones & had the ERCP to remove the stone from his bile duct & is still waiting for his operation 18 months later.

Yeah I had to pay for private gallbladder removal too as the wait was too long and the pain was unbearable. I think it was about 5k and they did it in a day, with a couple of weeks recovery. Well worth it after two years of increasing frequency of attacks and massive incompetence in diagnosis and treatment. I hope it gets sorted soon because it's really terrible.

Sadly I was left for 5yrs with duct damage caused by gallstones. There’s not a lot they can do for the pain, I mean they should be prescribing her pain relief, I’d imagine if it was acute pancreatitis they’d have kept her in, and they can give better pain management then. But sadly there’s a lot of diseases that leave you in pain and it’s very difficult to manage, especially as you become reliant on strong opioids to survive. In the end I had a major surgery (whipple) which has helped enormously, but I’m still in constant pain, managed by a slow release pain med and immediate release to top up.

NHS is often dismissive of constant pain, claiming there's nothing they can do. I disagree, I thinks there's often lots they can do.

The pain will be due to inflammation of the duct after the stone has passed. The only treatment is time rest and pain killers.

Removing the gallbladder is being done to prevent more tiny stones and sludge falling out , passing down the duct and causing further problems in the future . An operation won’t help the pain she is experiencing at the moment.
Often a ‘delay’ is planned to allow everything to settle down and for the surgery to be done more safely. In my experience this would be around 2-3 weeks .

I’m a surgeon with gallbladder experience. Talk to the surgeon - they will confirm that unfortunately an operation will not take away the pain at this point.

Did you have your spinal fusion operation? Are you still in pain after the operation?