Gallstone help

[SayCheeseBoris]

I've suffered with random Gallstone attacks since last year and was hoping to see the surgeon soon to get on the list for surgery. However with Covid pressures it looks as though I'll be waiting 18+ months for an initial appointment before I even get on the list. I can't afford to go private at all, the cost is just too much for us at this time but with saving I could maybe afford it in 2-3 years.

In the meantime though what the hell am I supposed to do? They're happening sporadically so maybe no attack for 4 weeks then 2 attacks within 3 days of each other, another a wee later etc. There's no knowing what sets it off as it's been different things each time (chicken, sweets, egg, salad, chocolate etc) but the attacks are awful. They do usually settle within an hour with strong painkillers so I ride it out on my bed huffing and puffing like a loon just to get some relief. I feel like I couldn't possibly make it to hospital in that state (hospital is around 40 mins away) as I can't sit up or walk it's only the fetal position that gives any sort of comfort so that's all I can do.

I feel like this is ruining my life I'm constantly on edge after eating and never eat if I'm away from home unless I'm with my husband and even then it's eat and straight to the car to get home before anything starts. I don't even eat much most days I eat small a few times a day so it's not caused by overeating.

Any magic cures or advice on how to cope when the bad ones happen? I know I'm very lucky that they last less than an hour (usually) and that they settle with strong pain relief but when in pain it's a very, very long hour and so distressing. The scan which confirmed stones showed multiple small stones so I'm guessing the smaller they are the shorter/less the pain so I am at least very thankful for that but also terrified of them growing.

I really feel for you. These attacks are horrific :( I was lucky enough to have mine out privately but before this they put a little camera down my throat and made a slit (can't remember where) to help the stones fall out and not get stuck. Not sure if this is something to suggest? I was also told to keep going in to hosp when I have one (I kept going yellow)

The things that offered me the most relief during attacks were Buscopan and a very hot bath. In terms of avoiding them in the first place, I found it wasn't just what I ate, but when - anything in the 3 hours before I went to bed/laid down was asking for trouble. Rather than trying to identify which specific foods are setting you off, look at the fat content. Everyone seems to have their own tolerance in terms of that - I found I was usually ok if I stuck to less than 4g of fat per meal.

The pain is horrific you have my sympathy. I was also lucky enough to be covered by my insurance so had it done quickly, but I didn’t have attacks as frequently as you sound like you are (although mine were longer and not touched much by home pain relief ).

To be honest I would go to the GP and tell them how often the attacks are and ask to get moved up the list. Can you be seen quicker at a different hospital? Or is it an option to have just the initial consult privately then move to the NHS for the operation?

I never worked out what triggered mine so can’t help there, sorry.

Good luck to you.

I am planning on ringing my GP tomorrow to discuss it because I do think they are quite often.

I will definitely look into getting some buscopan.

I'm not sure how a private referral works? Does the private consultant just put you on the NHS waiting list or is it still a case of needing the NHS surgeon to put me on the list? I've no idea how this works but could talk this through with the GP too.

Sorry can't offer much advice, I never found out what would cause my attacks but always at night!!!
I had mine removed in March on NHS after a stone blocked my liver! 2 ERCPs later they removed blockage and then scheduled operation as once stones move around they are likely to do it again and pancreatitis is highly likely!
Best wishes on getting your op soon x

Definitely get buscopan, it makes a big difference and you can buy it in the supermarket. Also it might be worth attending A&E when you get bad attacks. That might get you referred quicker for surgery. I had attacks for 6 years before I had surgery (however went about 2 years between attacks) but ended up with serious complications from the last one and had to have emergency surgery in the end.

I'm surprised you have been eating eggs and chocolate- fat alert!!

You need to eat totally fat free

Read up on Rosemary Conelly her fat free diet came from waiting for gall bladder removal.

The pain is horrific you poor thing

You have my sympathies. I had mine out 4 years ago. The pain is agonising and much worse than labour for me. I don’t know what to suggest other than talking with your GP again and trying to see if you can get an urgent referral. If the pain doesn’t clear, go to A&E.

I never left the house without buscopan, anti sickness medication and morphine tablets.

I never knew what triggered mine.

I just have to deal with Sphincter of Oddi now.

So the things that cause my attacks were fatty foods, particularly fatty dairy.

So ice cream, egg mayo, creme brûlée weee hell…

Yep I have been eating eggs as I'm on a high protein diet but I've no willpower when it comes to the odd piece of chocolate. I wish I could figure out what triggers them but so far it's always been something new. I've signed up to myfitnesspal so will be noting which days they happen and see if there's anything in common. I have IBS and had been able to track down my triggers in this way so hopefully can do the same here.

Had anyone tried the gallstone cleanse drink I've read about online? Probably a load of crap but at this stage I might be willing to give it a go.