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still having problems after gall bladder removal

(158 Posts)
Babyramone Sun 30-Dec-07 22:51:57

Hi have posted about this before.
Had my gall bladder removed in august since then have had 3 attacks similar to when I had gall stones. Had the 3rd atttack on friday and it was awful. Nearly phoned NHS24 but after taking both cocodamol and diclofenac got it under control. Anyway will be visiting G.P tomorrow but wondered if any onw else has experienced this.
I googled (bad idea i know)and there is a condition called Post Cholecystectomy Syndrome.
Has anyone had this?
I seem to remember someone mentioning this on a previous post, may be wrong though.

dondon33 Sat 05-May-12 21:32:26

no probs Wiz smile so if you still feel acidy when you return to GP tell them, maybe they would give you the 30's for a while, it could make a big difference to you.
I quite like natural yog anyway but I use it like medicine for my tummy if I know I'm eating something that's likely to hurt...3 big spoons before the meal and 3 big spoons after smile
Take care x

alwaysme Sat 05-May-12 21:39:11

dondon - the lurching, squeezing feeling, is that at the top of the stomach, where the gall bladder pain used to be?

I had my gall bladder removed April 2011, then was promptly hit by pancreaitis where they had missed 4 stones in the bile duct. ERCP to remove them and so hoped that was the end of problems.

A week later this strange sort of spasm started, right where the pain used to be. Just two fast spasms, not exactly painful just uncomfortable and odd feeling. Doctor put me on omeprazole which didn't get rid of them but they were less noticeable. Last November I had the bright idea that perhaps I might not need them anymore and stopped them on a Monday. All was well until Wednesday evening. Had just finished a meal, stood up and two really sharp spasms promptly followed by bad pain right where gall bladder pain had been.

Took the omprazole again real fast!! Was another 3 days of pain before they started to work. Haven't dared stop them again since!

Seems like we are stuck with this and with no answers to what causes it. Doctor just kind of scratches his head and says just one of those things. Real helpful, not !!

dondon33 Sun 06-May-12 13:35:22

Hi Always, I feel it more in the middle, just under the middle of my ribs. It's like, you know when you're really really starving and your stomach makes those big growls and feels so empty (hopefully that's not just me lol) well it's a similar feeling but with an actual spasm/squeeze. Like when a baby kicks it feet up there.
Ouch at pancreatitis, not nice sad It's crap isn't it, having to rely on medication for long periods but unless we want problems then we must. The thing is though, if you research the Lanzop and the Omep - they are proton pump inhibitors- they drastically reduce the amount of acid your body produces- you will see they are not good for very long term treatment, which is why often Gp's will insist you reduce dosage or stop them, even for a break period.
I have been put on Zantac before (I fell preg and Lanzop is not safe to use, I later had a MC and returned to Lanzop again) but they were OK, they do the same to stomach acid as what we take but they don't change our cells and enzymes in the same way, but you do need a high dose of them that can only be prescribed, not what you can buy OTC at pharmacies.
I think GP's are starting to realise that there ARE problems after the op a lot more now, my own said that increasingly more, especially younger people are having GB removals due to GS now (for which they blame our bad diets over the last 20/30 years) it's not just the older generation that previously used to need these kind of ops- and they could put any after probs down to their age etc....They'll have to take a lot more notice and find out exactly what happens in some people after they have this operation, it's not acceptable to be fobbed off all of the time.

Shellski86 Sun 20-May-12 20:14:36

I had my gallbladder removed in sept 2010 when my son was 9 months old. I developed gallstones whilst pregnant and spent 6 months being told i had indigestion and to just keep taking gaviscon. Once i had had my son and the pain continued i was turned away from three seperate GP's that offered no help andd put my pain down to affects from my C-Section!! Finally after being rushed to a&e by my family doctors looked into my family history and booked me an appointment with my GP to confirm my gallstones. Since i have had them out i have experienced at least 6 attacks that have been just as awful and cripplingly painful as when the gallstones were still present. I have found pork fat to be the worst item for setting off the pain but otherwise like before there seems no pattern. I have an appointment with an Osteopath next week who is confident that she can help prevent any further attacks so fingers crossed she'll hold the answer.

dondon33 Sun 27-May-12 22:00:22

Hope you get sorted Shell, it's shite to still be in pain sad
Yeah they tried to say I had indigestion or heartburn when mine started too (was also pregnant) it wasn't until my liver started causing problems that they took it seriously......by the time they pissed around and confirmed it, was too late to operate. Apparently... under 5 months and they could have removed the gall bladder but over...not a chance as womb was too high.
I find any oil other than olive oil a killer also any food that sucks lots of fat in...my MIL makes gorgeous potato cakes and other delish Polish food but I can't even look never mind eat sad It's crazy, you say there's no pattern, I agree....I can eat something many times with no probs then all of a sudden it causes me agony????
Do you take Lansoprazole already? they do help.

BambinoBoo Tue 29-May-12 14:37:42

Hi everyone.Hope you are all ok. I got a cancellation through and finally had my gallbladder out 12 days ago. Dressings off yesterday - healing beautifully my nurse said. Other than feeling tired, I feel ok overall. I'm still getting those weird stomach squeezes, just under my bile duct, but much less since I had the GB out. When I described the feeling to my consultant, he said he'd never heard of it. It's not painful, just odd. Strange. Haven't had much diarreah (sp) either and zero heart burn, but then I've not gone mad on my diet and am still sticking to very low fat.

dondon33 Thu 31-May-12 05:06:45

Ah great Bambino, glad its gone smile
Consultant - GRRRR sad there's too many people on here and in the RW that I know have this spasm/squeezes for them to just brush off.
Good you are still eating low fat but when you do eat something of high fat you probably will get some symptom like acid but more likely diarrhoea. I still get bouts now sometimes some 12 years later (but I'd rather it than pain)
It's another weird one as in the foods you would expect it to happen with, it often doesn't e.g I can eat a little bit of kebab (I know, I know why would I want to lol) and get nothing, even though its got HUGE fat content.

BambinoBoo Thu 31-May-12 10:10:29

TMI but I had terrible trapped wind last night and I got a massive tummy squeeze. It feels like my stomach is empty and stuff is rolling around it in waves.

The food thing is so random and weird dondon. Like, roast potatoes made with olive oil. Agony. Salsa Verdi made with olive oil - probably more than in the roast - perfectly fine. Maybe my gallbladder liked a bit of posh nosh.

I am really looking forward to trying some baked salmon this weekend. I haven't been able to eat it for about 9 months.

dondon33 Mon 04-Jun-12 21:01:54

The trapped wind is quite common post op Bambino, hope it sorts itself out for you soon.
Yup I give up now trying to work out what food will hurt me and what won't lol what I do find is the food that sucks the most fat in like pan fried things and roasties. I put oil on salads and have zero symptoms??? like I said I GIVE UP smile
Ah I hope you enjoyed your salmon x

spandau1980 Wed 06-Jun-12 20:38:22

hiya all some things that have defo helped mesmile if you have SOD
AVOID CO DIENE OR MORPHENE!!!
USE tramadol or patches (bunorphene) in small doses for pain to avoid spasms!
Walk around if you get an attack.. I KNOW NOT EASY but a brisk walk helps me no end even if i walk like a spastic lol anythings better than that pain!!!!

ACID ?BILE REFLUX

Slippery elm tea
dgl chewable tablets
natural yoghurt with acidophulus in plus 3 billion acidophulus capsules mixed in x2 a day
green tea
make sure you take sublingual b12 for a good few months post op

dont over do the fatty foods but do have some fats to build up getting used to eating it...
ive gained 10lbs im over the moon...
my shoulder pain is now intermittent and my acid has come under control if I STICK TO WHAT I CAN EAT!!! this takes ages to work out... im now 8 months post op and to begin with it was misearble hell!!!
a few postive steps ive had to work out myself doctors/hosptial/consultants F$$ckin useless im afraid...
smile hugs to all shazz xxx

spandau1980 Wed 06-Jun-12 20:40:13

ps i can eat chips but not chocolate i can eat mayonaise but not tomatoes its very weird and individual but i had to sufert eh pain to realise this.. ps cheese and eggs are a NO NO!!!

Schezza Sun 17-Jun-12 10:36:55

I have read this thread with great interest and much sympathy. I feel your pain,as they say.
I had my gall bladder out 18 months ago following several years of pain and the ultimate discovery of a few gallstones. I was really looking forward to being free of the pain. Sadly this was not to be the case. I made a great recovery from the op but unfortunately after a couple of weeks the pains returned.
I went back to my gastroenterologist and had a lengthy series of tests, endoscopies and scans. Having pretty much mapped my gastrointestinal tract from top to bottom they found nothing.
As you might imagine, I have read widely on post cholecystectomy syndrome and sphincter of Oddi dysfunction, aptly named SOD for short. Without quite risky sphincter surgery which might not work anyway, the bottom line is that I need to get on with it and mnage the pain.
Like some of the posters above, certain , apparently random foods set it off so I am developing an ever growing list of foods it is best not to eat. I suspect that it will remain a bit of a mystery how it all works, bu I am getting better at managing it.
The food sensitivity is part if the picture, and the pain associated with that is bad but more or less tolerable. But the worst bit of the syndrome is the apparently randomly occuring severe spasm pain.
The worst episodes usually happen in the middle of the night. The pain wakes me up as it starts and works up to a crescendo. By this point the pain is so bad I am dripping with sweat, my pulse has slowed right own and I am beginning to lose consciousness. (Classic vagal response to pain) I often vomit at some point during these episodes. ( give me labour pains any day!)
Taking pain killers at this stage is pointless, because the likelihood is that they will not stay down, and by the time they would start working the pain has usually gone.
Anyway, quite by chance, I think I might have discovered a very simple way of stopping the spasm. A glass of water.
At the beginning of one of these episodes of pain, for some reason- probably thirst, I had some water. The pain pretty much stopped in its tracks. I have subsequently tried drinking water each time the spasm pain starts and so far it seems to work.
Just last night, not long after I went to sleep, I was awoken by the pain, which was shaping up to be a bad one. I now always keep a bottle of water handy so I gulped some down and the pain went. I think what is happening must have something to do with stretching my stomach and setting off peristalsis, which may somehow cancel out the spasm in the sphincter. I really have no idea but it seems to work anyway. It might be worth trying for some of you out there with a similar problem. I think it will only work if you drink the water as soon as the pain starts. I suspect that once the spasm takes hold there will be no stopping it - plus there comes a poimt where it would probably be impossible to drink anything without it coming right back.

Of course, I fear this technique would not work with the pain brought on by certain foods, but I am gradually working through that one. smile

alwaysme Mon 18-Jun-12 21:52:59

dondon33, just found this again, missed your reply! Yes, that's exactly where I get the spasms. I made a mistake saying same place as gall bladder pain, should have said where the pancreatitis pain was. Still have the spasms but don't know if I am just getting used to them or if they really are getting a bit less frequent.

I've been taking the omeprazole for a year now, just keep putting in for a repeat prescription. I keep expecting the doctor to review things but so far not a word. It seems to be the only thing that stops the spasms turning into that awful pain. But, they just reduce the acid so I'm puzzled, never had this problem at all before gall bladder/pancreatitis ops.

I find it so hard to believe that doctors/surgeons (including mine) don't seem to be aware of this or so they would have us believe!!

Schezza Finally I've come across somebody who deals with it the same way as I do; except that I drink milk instead of water. I don't know why it works, or how, but I'm so bloody grateful that it does!

Just as a by the by, once it really kicks off, I've found that opening a tramadol capsule and sprinkling it on my tongue helps pain-wise (something to do with absorption by the mucous membranes).

spandau1980 Thu 05-Jul-12 14:25:03

Oh sod
i have that!
I can't take any pain killers or im puffing on the floor like im gonna die for 1-2 hrs!!!!
I found walking around briskly helps if i stay still its unbearable! Avoid codiene!!!!!!!!

lullabybaby Sun 23-Sep-12 15:15:24

Hi gall bladder sufferers! I looked at this thread before deciding to have my gall bladder removed. In the end, I had no choice as I could barely eat anything at all and the attacks were getting worse.
Now here is some good news, nearly a year later I feel great, so much better than before. Also, I have lost weight, an unexpected bonus. (I eat a very low fat, vegetarian diet.)
I am really very sorry for those of you who are still suffering after having gone through the surgery (which is most unpleasant) But to those of you who are considering whether to have your gall bladder removed or not, be aware that the surgery can have positive outcomes and is sometimes a life saver.
It may be that I will have related problems in the future, that's a risk of course, (and alas, no more chocolate for me) but I wouldn't have my gall bladder back if you paid me!!
Good luck to those of you still suffering, I hope you find help with your problems.

Popeye150 Thu 14-Mar-13 17:13:01

Thank you for posting your experiences, you've just eased my mind considerably! I had my gall bladder removed with a handful of stones 5 years ago. I eat already ate a healthy, low fat diet with plenty of fruit and veg. so I couldn't change my diet, apparently I was just unfortunate to have developed stones. Attacks seemed to be quite random, like Schezza, they were frequently at night when the pain woke me up and grew worse. After my op. all has been fine, I've continued to eat well avoiding too much fat. Then, last week I had a chinese takeaway and had what I can only describe as gall stone pain shortly after! Just like before,the only way to handle it was to curl up in a ball and wait for hours for it to gradually dull. Since then I've felt nauseous with abdominal pain evey now and then. It seems I'm not alone! It's really comforted me to see others have had the same thing, whether it's Post Cholosystectomy Syndrome or not, I think I'll just watch what I eat rather than having any more interference by Doctors. By the way, thanks for the posts re codein, don't think I'll be taking any of that!

MagMay63 Sat 16-Mar-13 20:32:46

Hello everyone, thank goodness I found you! I had my gall bladder removed on 6th March, hadn't had any of the usual symptons, just a very low grade pain in my side, but a scan revealed stones and so it was removed. No problems with the operation and all well in respect of recovery but I keep getting a terrible pain in my breastbone area running through to just under my right shoulder blade. I had it after the op and the nurse described is as phantom gall bladder pain but I didn't expect to be still getting in 10 days down the line. Not sure if its linked to anything I'm eating, am very overweight but keeping to a low fat diet. Not sure whether I need to see my GP again, will monitor for a wee while then might need to see advice.

OhDearieDearieMe Sat 16-Mar-13 22:36:16

MagMay63 - 6th March? In the grand scheme of things that's really not very long at all. Try to take it easy on what you eat - your body needs time to get used to the new arrangement and your weight will benefit from you eating more sensibly. I'd say give it at least another couple of weeks before you worry too much.
By the way I'm now over 6 months post OP and after massive and invasive investigation my continuing pain has been put down to a nasty dose of duodenitis! So it may not be gallbladder related at all! The pain is very similar!

greeneyed Mon 18-Mar-13 16:25:06

Wow this thread has been enlightening! I had mine removed three years ago and have pain all the time. I am on lanzaprazole and everytime i stop it for a few days i have really bad gastritis again. The worst episode I had, on floor unable to move was after I had taken Codeine for tonsillitis. I then had bloods done and had raised lft results ( fine a week later). i did think the codeine was just a coincidence- will avoid in future Anyone know why it has this effect? Sorry i know it's an old thread!

OhDearieDearieMe Mon 18-Mar-13 22:44:32

greeneyed - sorry about your ongoing problems. I've become a bit of a keen researcher into all of this! I suppose it's mainly because I read/heard of so many people who had the operation and were back to work in a week! Well - I think they are the exception and not the rule because those of us who suffer on afterwards tend not to go on about it. We feel that we've had the problem removed and should just keep quiet! DH is a nurse and works closely with the region's top gallbladder man. It is much more common than you'd think for problems to continue.
Firstly - see if you can get off Lansoprazole - it's a cheap crappy drug and they always try you on that first and wait for you to complain. Complain!! Ask for Omeprazole.
Try cutting or greatly reducing acid foods from your diet - this has helped me quite a bit.
If you smoke - don't! Or try to cut way down. I'm trying!
Codeine leads to constipation - bad for people like us. See if GP will give you Tramadol and Movicol. I'm using both of these and it helps.
Good luck and keep posting here!

PoppyWearer Mon 18-Mar-13 22:48:21

greeneyed I had my gall bladder out last year and have found that taking co-codamol since then gives me crippling "colic" and makes me vomit. After vomiting I feel better. This has happened twice, it's not a coincidence and I will not be taking co-codamol again.

Which is crap if, like you and I, you have other health stuff requiring heavier-duty pain relief. Mine is back/shoulder pain.

I guess the liver can't cope with codeine on its own?

greeneyed Wed 20-Mar-13 21:33:13

Thank you ladies, that's really helpful advice from you both, will see if I can get change of stomach drugs and will definately not take co-codomamol again x

andy631 Sun 31-Mar-13 20:59:19

hi here's my story, i had my gallbladder removed in nov 2012, in feb 2013 i collapsed in work due to severe pain where the gallbladder was, i was rushed to hospital had ultrasound scan and ct scan, nothing showed up. i was discharged but two weeks later was rushed in again as the pain wiped my off my feet, again blood tests normal etc, i was discharged being told i had Costochondritis, i visited my GP who said he was not convinced, he put me on diclofenac after me asking for them, i also told him i feel like i am cracking up as there is no diagnosis. after 2 weeks on diclofenac the pain is a little easier except when i eat it hurts like mad. i am going back to my GP on friday next week. i am also being referred to a chronic pain specialist, but that is not the answer i want to know what the problem is! so to my fellow suffers i know what you are going through!

andy631 Sun 31-Mar-13 21:00:45

oh by the way i am also taking omerprazole twice a day to counter act the diclofenac!

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