Anyone refused gallbladder removal?

[mintied]

If so why?

I'm talking to a surgeon tomorrow and really hope they agree to remove mine. I'm trying to work out what and what not to say. I don't want to mess this up.

With me it was my liver count (or some junk) and the fact I don't drink to excess that decided it. The numbers were alarming. Good luck.

I had mine out but wish I hadn't.
I was misdiagnosed as having gall bladder issues when actually I had. A spasm of the bile duct called sphincter of oddi dysfunction.
My advice would be to be absolutely sure that during a gallbladder attack it isn't the duct spasming.
This can be done by a blood test.

They refused to remove mine initially. I was in so much pain and went to a price private surgery.

That evening I “woke up” with a very distesssed mother that had called an ambulance as I’d passed out with the pain.

This happened again a few days later and I was THEN offered the op. It really shouldn’t have to come to that IMO 🤷🏻‍♀️

I've had mine out today (well technically yesterday but I'm rough round the edges and not sleeping well).

I had put the suggestion forward that my frequent and severe stomach pains were gallstones. My GP was I think slightly dubious as my pain was centre rather than to the right but sent me for an ultrasound and bloods anyway. The bloods were ok (though at times along mgg journey were raised when I was having an episode) but the scan did indicate gallstones and I was referred on.

The first hospital appt I had was a phone appt due to covid restrictions. That didn't go well, for some reason he didn't have access to my tests (they weren't done at the hospital but a private place the CCG had contracts with. I had thevscan report on an email from the GP but he wouldn't accept it and again didn't think it was gallstones as the pain was more central than to the right, despite information on for example NHS website saying pain is usually right but can be central. Anyway on receiving the scan he did put me on the list.

Due to covid, no-one had actually seen or examined me bat the scan and initial bloods. So while in the thrall of an attack I went to A&E where the op was scheduled to show how much pain I was in-at this point my LFTs were slightly raised (social drinker only) and there was indication of mild infection so given antibs.

I also had a scan at the hospital which showed my gallbladder fit to bursting and my name was prioritised for surgery as by then routine one were back post covid, but I still had to wait a few months, but really I appreciated that they were prioritising me given the strain the NHS was under.

Finally had the surgery.....and was told by the surgeon my gall bladder had over 200 stones in though needs to go to lab for full analysis.

My advice.....be assertive, keep a diary of attacks, and be well informed as you can. If a HCP can see you in an attack, I think it does help. I'm a mental health nurse myself, so know HCPs are sympathetic when they see someone is genuinely suffering, but as the NHS is so strained they really have to justify everything.

I'm in the middle of an attack now, 7hrs now, no sleep, codeine not working

Gall bladder pain is the worst.

Tramadol took the edge of mine, if taken enough time before an attack.

@mintied
7 hours is a long time. I'd go to A&E if I was in your shoes in case you've developed an infected bile duct or pancreatitis. Even if it's not, you probably need stronger analgesia. I was prescribed codeine for my attacks, it didn't do multiplication uch but they eased off after a couple of hours.

You have my total sympathy, gallstones pain is horrendous. I wouldnt wish it on my worst enemy.

Muliplication? Much!

Sympathy OP. I had a gallbladder infection and irs the most pain I've ever been in, and I've been in a brutal car wreck!

Luckily (!) it happened just before covid otherwise I think it would have been much harder to get treatment. Removal seems to be the go-to in normal times and i hate to think they'd just leave people to suffer a pain that is commonly described as worse than labour because of the pandemic

I went to A&E last April, so the start of the Pandemic, as I had awful pain but didn't know what it was.

They could ere gallstones on the ultrasound close to blocking a duct so asked me if I wanted my gallbladder removing the next day.

I chose to go ahead and they said it was good they did it as part of the tissue had gone gangrenous, they diagnosed cholecystitis. So I'd definitely get any severe pain checked out!

I had mine out in 2014. Despite the fact I had been severely ill with Severe Acute Pancreatitis and on a morphine drip due to the pain (gallbladder pain is nothing compared to Pancreatitis - I could barely breathe the pain was that bad), and was told another Pancreatic attack could kill me (I had 4 separate episodes), I truly regret it. I WISH I had asked about medication to dissolve the stones instead, or asked for the stones to be removed but the gallbladder left in place.

I now have severe digestive problems (and according to two different Facebook support groups for gallbladder removal this is common in 88% of patients who have had their gallbladder removed) and need to go to the toilet to poo 8 to 10 times a day. Forget about eating out, dates etc. Not possible, and I need to take Imodium to go out into town. 10 minutes after I eat. Straight on the loo.

I hate it and I WANT MY GALLBLADDER BACK! This, is no life. It's an existence, it's not a life. My life has 100% changed for the worst. And 88% of people who've had their gallbladder removed are apparently the same.

Don't do it. If you can find a way to remove the stones without having the gallbladder removed, try for that. I would give ANYTHING to have my gallbladder back. Absolutely ANYTHING!!!! It was a mistake to have it removed, even though it would have killed me. I wish I had insisted on another way, even gone private. Heed my warning, if it doesn't need removing (even then, fight against it), then keep it, you have it for a reason. It's only when you no longer have your gallbladder and your life is irrevocably fucked up because of it's removal, that you realise how vital it is in day to day life.

@NeonDreams -

@NeonDreams I'm sorry you are going through this. I've not heard of gallstones being removed and not the gallbladder.

I'm still not great, pain is a very rumbley 6 now, was still 9 a hour ago so hoping there is a end in sight. Feel sick, been rolling around the bed all night in pain, glad it's morning so I can get up and walk around without feeling guilty of disturbing everyone else. I'm exhausted.

To give you a positive story, I was told straight away mine needed to come out as soon as I was diagnosed.
I didn't have to ask or fight for it.
Mine was removed in 2016 and it was the best thing ever. Living with the constant grumbling pain and the fear it might lead to a full on attack was awful.
I hope you get a positive outcome too.

To give you another positive story - I had mine out four years ago after some horrific attacks. I've had no issues since then - no change to my diet, no change in bowel habits, etc. I can eat whatever I like, and fats cause no issues.

I was diagnosed with billary colic, so no gallstones and they refused to take it out. My grandmother had the same thing and she told me that cutting pork from her diet solved the issue for her, so I did the same and I've never had an attack since.

I was referred to be scanned straight away when I went to my gp after my very first (awful!) attack. Gallstones diagnosed, put straight on the list for gallbladder removal. Had to wait 8 months for the op though. I ate an extremely strict low fat diet until then, and never had another full-on attack.

So sorry to hear that @NeonDreams. I think I read about something called, I think, post cholecystectomy syndrome, which I guess is what you have?

To give the OP another positive story, I also had my gallbladder out after being hospitalised with acute pancreatitis requiring a morphine drip for the pain. I'd had several gallbladder attacks prior to this without knowing what they were (other than they were massively painful). I'm glad not to be having attacks any more. My digestion has changed a bit - so now I open my bowels probably 3 times most days rather than one or twice a day, and sometimes (maybe once a month or a bit less often?) I go suddenly from not needing the loo, to really urgently needing it. I can live with that though.

I put up with mine for 7 years before I ended up with pancreatitis and had it out.

I’ve had no issues at all since.

I had my gallbladder out in 2012. Best thing I had done. I was in so much pain a couple of times a week when the stones got stuck in the bile duct. I couldn’t work because the painkillers I was on made me so spaced out. Had a bit of a sensitive stomach for a few months after but it’s fine now. Gallbladder pain is so bad. I had all of my kids without any pain relief but couldnt cope with gallbladder pain without strong painkillers.

@NeonDreams have you had a SeCHAT scan to check for bile acid malabsorption? That can be a cause of diarrhoea after cholecystectomy. There are medications that work well to stop it if that’s the cause. Really hope you can find something that improves things for you.

How is it now OP?

Best decision i ever made was to get rid of my gallbladder. I don’t have digestive problems (other than some acid reflux) and don’t have the pain.

The pain started to properly ease off this afternoon and now I'm feeling drained. Hoping for a good nights sleep and to be able to return to work tomorrow.

The conversation with the surgeon was very short but he agreed that my gallbladder needs to go so I'm on the list. Big relief, just a waiting game now.

Hope you get it sorted quickly.

I found cutting out dairy and high fat foods helped in the meanwhile xx