Support thread for anyone who has/had gall stones.

[tortoise]

Hi all fellow sufferers.
I thought it would be nice to have a thread we can all use for support.

Hi tortoise, thanks for starting this thread. I was hoping this was all behind me but perhpas not. Should know this week whether there's another stone or not.

How are you coping with yours? When mine were bad (usually late evening) I used ice packs, pain killers and a tens machine to help me get to sleep.

I am coping ok. Seem to be avoiding attacks so far.
I find heat pad helps and also pethidine tablets prescribed by my dr! They are great!

Hope yours can be sorted easily. I never thought it would be possible to have a stone still there.

Me neither. Not sure if its one left or if its possible to have a new one form?

Didn't know you could get pethidine tablets...that sounds great

I thought the stones were made in the gall bladder? they can pass into the tubes so i guess thats what happened but i have no idea!

Oh yes the pethidine tablets are great.
Within about 30mins i was asleep! Can't risk taking during the day if i have an attack though.

Hi ladies

I have been attack free for a while now, but am still waiting for my scan results to be sent from my hospital to the doctors

I've just (2 weeks ago) had my gallbladder out while 15 weeks pregnant and I'm so glad I went for it and got it done. My consultant was happy to go ahead, but lots of other people including my midwife and parents in law etc were very much against it, saying that I was putting the baby at too much risk.

Baby was fine and 2 weeks later I'm feeling SO much better! Just being able to go out with friends and have a cooked breakfast without having to count the 6 hours afterwards to see if I get an attack or not.

One thing I found made a real difference was yoghurt of some kind - either an actimel style drink, or a tub of mullerlight or half a tub of normal plain (low fat obviously) yoghurt. Apparently the leicithin in the yoghurt binds the fat up so it passes straight through you. It worked for me, but I know it hasn't worked for everyone, but its worth a try

Other than that I just relied on my stash of dihydrocodeine which kept my pain bearable when I'd have an attack. Is safe to use in pregnancy, although not recommended if you're about to give birth.

If anyone is umming and ahhing about whether to get their gall bladder removed, I really would recommend it. I know it was only two weeks ago, but I am fully recovered and can eat normal food again

Hi all, I've just come over from another thread. My attacks are, at the minute, quite far apart though I do have to watch what I eat. No more pizzas, pork pies, or anything with a very very high fat content. I am going to make an appointment at the drs though because when I do have an attack I can't do anything, can only writhe (sp?) around in absolute agony, I swear its worse than giving birth!

Naetha what a lovely, positive post. It is always good to hear others experiences.
I am going to try the yoghurt tip. Anything is worth a try now!
I am still putting of surgery. Haven't had an attacks in quite a while and as a single Mum of 4 having surgery worries me.

I was going to ask about the ultrasound treatment. Have people tried it & has it worked?

From what I've read I don't think they use medication or the ultrasound treatment as much anymore -they tend to take the gallbladder out more often than not. Probably because they can now do it through keyhole surgery and its not such a major op as it used to be?

I am another one without a gallbladder and never looked back..

I find that although I have no pain now, certain food still upset my system so still try to keep away from high fat foods (which can only be a good thing anyway)..

But the best bit is that I can eat chocolate again!..

The operation was fine, recovery was good, definately recommend it..

And for those of you still not gone to your GP - GO, I waited for a year before I went thinking I could control it myself, and I did for 6 months or so, but then I started to get attacks even if I hadn't eaten anything high in fat etc..

So go to your GP ASAP....

rosmerta - theres a bit on Netdoctor here -scroll down to the Alternatives to Surgery bit.

It looks as though not everyone (or their gallstones)are suitable for non-surgical intervention.

thanks betty,

and heifer, am definitely taking your advice and booking an appt with dr tomorrow! I at least want to find out if its definitely gallstones or not.

heifer I guess i should listen to your advice and speak to my dr about having the op. I odn't want to get any worse.

Naetha..

Really interesting post as I am currently 27 weeks pregnant with no.3 and having awful gallbladder probs. I have been having gallstone attacks on and off since birth of first child 3 years ago but its only since getting pregnant this time that its really got awful. My consultant was adament that I waited if at all possible until straight after the birth to get gallbladder removed.. but because of this, Ive already lost a stone in this pregnancy!!

Im terrified of the surgery as I will have 3 children under 3 to look after and I'm always terrified of general anaesthetics, but its so nice to hear your positive story. I have several friends who have had same op and they all do suffer with sort of ibs symptpms since removal and particularly the 'runs' after any fatty food, but to be honest, I dont care.. I just want to eat a chinese takeaway again!!!!!!

Hope all continues well in your pregnancy

Sorry to be miserable, but I'm the other side of the story...

I had pain for years which gps said was stress, wind, indigestion etc. Finally a locum thought it sounded like gallstones. At the ultrasound, sure enough 'a collection of multisized stones' was found and I was booked in for surgery. After 6 months on a low fat diet which almost completely sorted the symptoms (I went mega low fat - nothing over 3% fat- and lost nearly 2 stone) I had keyhole surgery.

Well I have to say it has been the worst experience I could have imagined. The hospital was awful, I didn't even see the surgeon, no-one checked me after, I fainted a number of times yet they still expected me to go home the same day. Fortunately my mum put her foot down and insisted they keep me over night...

A year on I have pain again, there was never any follow up so I don't even know if the op went well and what was removed. I had a bad reaction to the anaesthetic so for months after I felt like I was drugged. The IBS was nearly uncontrollable and even now is pretty awful. I wish I'd done more research before letting them operate, I wouldn't have had it done if I knew that it could turn out like this

hotcrossbunny, i am sorry you have had a bad time, i dont like to hijack a positive thread but your experience sounds like mine. I do not regret the surgery because i do feel so much better so would advise anyone to think very carefully before not having it done due to the complications that gallstones can cause, and the pain, omg the pain! But i do still get indigestion and pain at times, nothing like before, just niggles really, i just think that certain foods set it off (am going to keep a food diary). I imagine that whilst we dont actually need to have the GB, well either that or im a medical miracle along with thousands of others, i guess not having the big burst of bile to break down the fat could be problematic sometimes.

I was treated terribly at the hospital, i wanted to stay another night as everyone in my family had a demon sickness bug and had enough on their plates without having to cope with me and me with them. They agreed to let me stay but i overheard the nurses slaggin me off, im sure it was deliberate, saying i was selfish and had buggered up their rota, so i arranged for DP to pick me up and told them i would be going home as my staying was obviously a problem. No discharge instructions, no advice re the wound, bathing etc nothing (had to go to my local clinic for advice and they were really cross for me), just a form to sign. I even had to get out of my bed and wait in the corridor until DP could come and get me, he was late as he was tending to sick DD. The reason i got out of my bed to wait for DP is because they made the lady who was "next" sit next to my bed and her DH was getting cross with me. Oh i wish i could ahve gone private i really do.

I have to say, the doctors and consultants were great, answered all my questions etc and agreed that if i felt i needed to stay the extra day (i had some very minor complications, nothing to worry about but caused some temporary discomfort) then they felt it was sensible for me to do so. The bloody nurses made me feel so shitty though.

I did actually feel sorry for them as they clearly were having to juggle to sort the bed problem out but one nurse was particularly horrible about me, in my earshot so i just felt really uncomfortable and guilty so went home, picked up the tummy bug from everyone else and was crying on the phone to the out of hours nurse by the end of the week, who was lovely and really understanding.

Saying all that, given the choice, i would have opted for surgery every time, every time. And also, i must say, that most of the nurses were lovely, it was just one in particular. I think nurses do a great job so dont want people to think i dont realise how hard their job is.

I'm really sorry for people that had problems both with and after their op.

I don't think I mentioned it in my first post, but I actually had the surgery done privately. I am covered with BUPA through work, and so got it done through that. Compared to when I was admitted to hospital with gallstone problems the first time (an NHS hospital) the private care was exemplary. I had a private room and excellent pre and post-operative care. I was able to speak to the consultant and the anaesthetist before and after the op and able to stay until I was happy to go home. They also let me have an ultrasound check of the baby after the op to make sure everything was OK (and I got loads of great pictures as well!) and I have a follow-up appointment next week.

Its certainly worth looking into if you are considering the operation. To pay for it up-front you're looking to pay between £3 and £6k (eek!) while it may be cheaper to get one years BUPA insurance, but check that it covers pre-existing conditions.

As for recovery time with 3 kids to look after...I had 4 days where to cough or sneeze was absolute agony, a further 4 to 5 days where I was quite uncomfortable, and then the remaining few days was just getting up to speed again. I was very tired for about 10 days after the op though, and I wouldn't have been able to lift anything baby or small child sized for a good week. If you can get someone to do the bulk of the work of looking after your kids for two weeks, then I would seriously recommend it.

Hope that helps a bit

for all those who had bad experiences, but I am with Naetha. I had only one really bad attack which landed me in A&E as I had no idea what was going on. I got anti-spasm drugs and painkillers which between them warded off a couple more attacks, went private (insured through work), saw a consultant and had the op - beginning to end was ~3 months. The op (at a BUPA hospital) went fine - I slept for a few days afterwards, didn't lift DS for maybe a week, and have had not a single problem since.

I am livid this morning. I had my U/S done on 5 July and had gallstones confirmed. I was told the report should be with my GP in 10 days - up till this morning, NOTHING! I ended up ringing the hospital who told me the report got sent to them on 6 July
so I have been sitting at home waiting for nothing. Now the doctor's surgery have to get the hospital to fax a copy over
oh how I wish I had gone private.

Hurray, liver function tests came back normal so the likelihood of my pain being a stone they left behind are very small. Docs reckon if anything its non-specific inflammation caused by baby pushing everything up and maybe even kicking against the scar tissue. Still going to push for an ultrasound though just for peace of mind.

I have discovered though that a surprisingly large number of people can still get symptoms even after gall bladder removal and that pregnancy hormones can trigger it off. The good news seems to be its rarely as bad as stones trapped in the gall bladder itself and rarely needs treatment.

Despite this little scare I would definitely have the op if I could go back in time. I had severe jaundice and borderline liver failure so had to have something done and its something to remember that while mostly gallstones are painful but not serious they can progress and be life threatening if left and they move and block the main bile duct from the liver (this is what happened to me). I had my treatment on the NHS, had 10 days recovery between acute episode to let all the inflammation go down and the pancreatitis subside and the op (keyhole). Day surgery, staff were fab and I stayed on the day ward til almost 8pm playing cards with the 2 nurses who stayed to watch out for me til DH turned up and I felt well enough to go. Recovery time was very similar to Naethas and the community nurses were absolutely brilliant. Another example of the postcode lottery I think

Sorry to hear that Sassy - I hope you manage to get some results now that you know they are there to be found...

They did find a lot of scarring / things attached where they shouldn't be when I had CSection #2 but said that was far more likely to be from CS #1 (emergency) than from keyhole gall bladder op. Pheebe it sounds to me that the NHS were great for you - when it was life-threatening - but fortunately most gall bladder ops don't fall into that category and therefore get pushed to the back of the queue.

Really sorry to hear of your bad experiences.

I've been ok recently, just a couple of niggles rather than an outright attack, but have been keeping to a very lf diet.

I do have an appointment with my GP in a couple of weeks, fingers crossed he'll do something!

I've got a date through for my ultrasound -its in 2 weeks time which isn't bad considering I only saw the GP last week (she warned me it could be months).

I was a bit that I can't eat for 6 hrs beforehand -I'll need to get up about 6am and stuff my face with porridge. I'll still be starving by mid-morning though.

Can I ask a question of you all - with the ultrasound can you, as the patient lying there, actually see the gallstones yourself? Or does it take a trained eye to see them? Its just that they say results will be sent to your GP and you must speak to them so in theory the radiologist (?) won't tell you what they see.