Strange gallbladder problems. Anybody else?

Digestive health
1

Apologies in advance if this ends up ridiculously long!

Basically, 12 months ago I started getting horrendous chest pain, which was initially put down to acid reflux. All the general PPI blockers don't help, and it has been getting steadily worse. GP, A&E doctors and GI surgeons haven't been able to figure it out. After working with a nurse who had similar problems, she put me on to the possibility of it being my gallbladder, so I went back to see a new surgeon who has agreed and I'm now on the waiting list for surgery to have it out.

i don't typically get the pain to the right side of my chest, it's generally central, but can spread out across my entire upper abdomen and through to my back and shoulders. And my upper abdomen will swell out and become too tender to touch, even having clothes on is excruciating.

When I get the attacks, they'll last for a good 4-6 hours, and as dramatic as it sounds, the pain is that excruciating, it makes me want to die. 

I have found that I can generally eat whatever I want, as long as it's before about 5pm. After that, I have to be really careful. I do smoke, but don't find that it has any bearing on the attacks. I also drink alcohol, but again, it doesn't seem to make a difference.

I've also lost about 2 stone in weight, which is kinda great, but I couldn't really afford to lose that much, as is evident by my lack of periods (sorry, TMI). The surgeon doesn't think the two are related, but since I've been terrified to eat, and also been having some interesting bowel habits recently, it's not been helping matters. I went through about a month period of basically not tolerating any food, it either made me vomit almost immediately or came out the other end at a rate of knots, which has led everyone to believe it's IBS. However, I don't think you get this level of pain with IBS.

I take 30/500 cocodamol nightly, mostly as a precaution these days, but ive also recently been given Tramadol since the attacks have been getting so severe that codeine doesn't touch it anymore. It's gotten to the point that it take 4 cocodamol and 4 Tramadol before the pain will even begin to ease.

I know this is ridiculously long, but does it sound even similar to those who've had gallbladder problems? I feel like my symptoms are so crazy that they don't fit into any particular bracket. 

Any help?

Thanks

2

Hi Sarah have you had an ultrasound scan or a hida scan? Are they removing your gallbladder based on your symptoms alone? Also I think you not having any periods has a lot to do with it. I had 1 large gallstone and had pain under my right rib that went through to my back. It was a burning stabbing pain. Some people do get pain in the shoulder too. I didn't have diarrhea before the operation but did afterwards. Have you had any scopes? I also had a large cyst oh my ovary which I wasn't told about before my op and was only told 2 months later when I started vomiting all the time and had horrendous nausea. Have you been scanned for cysts because cysts can also cause your period to stop and can cause nausea vomiting indigestion and ibs! Have you tried alternative treatment at all? I wouldn't rush into having your gallbladder removed unless it diseased or you have stones. X

3

Sarah,

I would say that you are having issues with your gallbladder for real!  I used to get that  whole abdomen pain.  I'd advise going down the route of a fat free diet.  That is what the medical professionals advise but I found it impossible so as low a fat diet as you can possible go, no alcohol either, boo hiss I know, it's a bugger, and that should help.  I personally don't believe in IBS.  I was told I had that 20 years ago and it turned out it was gallbladder related all that time.  I personally find the diagnosis of IBS a cop out!  I wish you well. 

4

Your description of the attacks of pain sound just like mine when I started getting gallbladder pain attacks. The first one made me think I was having a heart attack.  The pain builds to a crescendo and stays there for hours.  There is getting away from it and you really do think being dead would be preferable.  Keep away of fats as much as possible.  I was given strong painkillers go take until I decided to have it removed after regular attacks over about 18 months.  It does sound like you have gallstones and all that goes with it.  Whether you have IBS issues as well I can't comment on as I didn't/don't have that problem.  Good luck.

5

Sarah,

I had most of the same symptoms as you (except the period stuff for obvious reasons. Lol)

Mine started as horrible chest pains and indigestion that woke me up in the middle of the night. My PCP scheduled me for a stress test and scope, and both came back normal.

Then the nausea started and the dry heaving followed after eating. And the pain was the worst. It would range from a dull constant ache to sharp, stabbing pain that landed me in the hospital twice. I had 2 ultrasounds and both came back normal, bloodwork, ct scan, upper gi, and HIDA scan. The only thing that was out of balance were my HIDA scan Numbers. But the surgeon said everything was normal.

After another month of symptoms, and a total weight loss of 40 lbs, I saw a new surgeon who immediately pegged it as my gallbladder. She said she sees a case a week like mine. They got in there and found it was diseased and 10 medium sized stones.

I went nuts feeling like no one believed my symptoms until I met the second surgeon.

It's comforting to know sometimes that we aren't crazy. Lol. Good luck with the surgery and let us know how it goes.

6

Sounds exactly like what I had. Central upper pain that would spread all over. I was under the impression if it was gallbladder it would mostly be on the right and through to the back which only started recently. So I was convinced it wasn't my gallbladder. It got to the point I was scared to eat, taking painkillers several times a day.

But as I couldn't take the pain anymore I opted for the surgery and I'm now a week post op and no pain!! I wish it had been explained that it's not just on the right as I've suffered for years!

7

Hi Sarah.

everyone seems to have their own experiences when going through gallbladder problems. Some of the symptoms overlap and you can identify with other people and what they write. But pain is a very perculiar phononema and we all experience it and cope with it in different ways.

at the worst, I would go three or four days without eating solids for fear of further pain, nausea etc but then I would feel normal and eat again and it would come back.

i would have terrible stomach bloating, followed by what is now called IBS symptoms. Since having my gall bladder out , I have no IBS and once I came to terms with the fact I wasn't dying of some terrible illness, I learned to cope and my mind stopped playing tricks.

they can't take your gallbladder out when you are really ill with pain, it apparently is safer to remove it when it is more settled.

anyway, hard as it seems, try to relax, when you are het up you are more likely to feel less pain.

hope you get this sorted soon.

m x

8

Hi sarah50457

All the side effects with my gallbladder, was that I couldn't keep food down, one day it would be fine and the next I'd have my head in a bucket.

My doctor advised me to give up smoking & drinking and start a very low fat diet, this helped a little, but the weight loss is mental!

the only thing I can advice is drink plenty of water that helps push stuff through and chill out as much as you can

i really do feel for you its crap but hopefully it won't be long

 

9

Sorry, I should have included the tests in my intial post.

i've had an ultrasound and an MRI with contrast that both confirmed gallstones. I also had an endoscopy which came back clear, and countless blood tests that have all been clear. I definitely have stones, so I'm not rushing into it, and at this point I can only go on so much longer without having some sort of solution! 

I think that the loss of periods is from the weight loss, i've lost about 20lbs, and only being 120lbs to begin with, it's dropped me down to around 7stone. But I wasn't sure if the weight loss and problems with food was something that was normal with gallstones. So many people have so many different symptoms for the same thing it's crazy.

I haven't checked into the cysts, it wasn't something I considered since everyone has been pushing down the route of IBS or acid reflux, so I'll definitely have a look into that, thanks.

10

i've been trying to do fat free but it's hard! Haha, I've been trying to take it a little more seriously recently, since the attacks have been so bad, I'm double checking labels and trying to go for low fat as possible but it sucks! I'm not a real believer in IBS either, something somewhere clearly isn't working, so what is it?! 

The thing I've found with alcohol is that I can go for a week without it, and still have attacks. I can go for a week drinking as I would regularly, and have either the same or less amount of attacks. Which is weird, because everybody tells me that alcohol should be a huge trigger, but I don't seem to find it to be for the most part. Thankfully! Though I am cutting down a lot on my consumption.

Thanks, I'm glad you managed to find out what was the root of your problems!

11

Thanks, I'm glad (in a weird sense!) that I'm not the only one! Mine start out really niggly and small, and then builds up. If I can catch it, I'll pop my painkillers asap, and sometimes it'll stop it in it's tracks, but recently there's been no stopping them. I've been taking codeine now for nearly 12 months, and have begun topping it off with Tramadol and Buscopan (which does jack!). Pretty soon I'm going to rattle!

12

I know, sometimes I feel like it's a mind over matter thing! And then the pain kicks in, and you realise it most definitely isn't! My doctor tried to pull the whole "sometimes, as we get older, our body chemistry changes and we get pain that we just have to live with". I don't think so. Like you, mine mostly wake me up in the middle of the night. So no, it's not something I can live with!

Thank you, I'll try to keep you guys posted. I'm hoping the surgery will come through in about a month.

13

I was the same! Everything says that it should be the right hand side, where as mine is mostly central, right on my breastbone where your bra sits. It was only that a nurse had the same problems for 25 years, and had hers out and no longer has any problems. 

I'm so glad to hear that you're no longer having any pain! I hope you continue on with good health!

14

Thank you. That's been the biggest trouble, is that I feel like my symptoms are not related to gallbladder troubles at all, since everything can be so different. I've been the same, having such bad attacks that I don't eat or even move for days afterwards. But also I can eat a certain food one day and be fine, but the next day be in all kind of trouble!

I was wondering whether the IBS symptoms were brought on because of my body just getting to the point that it could no longer take much more of a beating; it's so run down that it's fighting everything. And my eating patterns have been all over the place due to not eating for 3 days, then eating normally for a couple etc. I think it just likes consistency!

That makes sense that they can't take it out during an attack, I've been to A&E 3 times with it, and each time they gave me stronger and stronger painkillers. I'm hoping the surgery comes through soon!

Thank you very much

15

Yeah, the weight loss is crazy! I've been trying to cut back on everything, but it's hard to sometimes, especially when they don't seem connected. I've started to figure out which foods are major triggers for me, and I'm trying to keep as low fat a diet as I can. 

Thanks for the advice, I've started to drink more water in the past couple of days, so I'll carry on with that.

Thank you!

16

If you've loads of stones then it's definitely your gallbladder. Some people do get vomiting and diarrhea with gallstones particularly if the stones get stuck. The main cause of gallbladder problems in women is high estrogen levels which also causes hormonal problems too like cysts fibroids irregular periods. While you waiting for your operation take apple cider vinegar 1 tablespoon 3 times a day in warm water. Helps with the pain of the stones and can help dissolve them too. Also apple juice is good for gallstones if you can stomach it! Good luck. I hope you have your operation soon. X

17

Gall bladder removal is not without risk and not everyone has an easy time afterwards so while it is definitely the right thing if you need it out, you really need to know for certain.  After an US scan I was sent for a special kind of MRI scan; I forget the name but they place something on the liver area and the MRI scans the pancreas, liver and gallbladder.  That revealed many stones in the GB and distended Common Bile Duct with the presumption that a stone was lodged.   They then gave me an endoscopic procedure called an ERCP to deal with the stone(s) actually stuck outside the gallbladder.  Now they are thinking about removing the GB but the decision won't be taken lightly.  My GP says 'yes, go for it' and my GI specialist (not a surgeon who would remove the GS) is hmmmm about it.  Before committing to surgery do be sure you've had all the diagnostic tests.  I can't imagine the NHS taking our your GB withpout but my family have had the opposite experience going private.

18

Tom I totally agree with what your saying. I went private here in Ireland and have no doubt now if I was in the public system my gallbladder would not have been removed. I had 1 large stone causing me pain which I only had for 6 weeks when I had the operation. My surgeon whom I've known for 23 years recommended removing the gallbladder as the stone was too big to get out and he said things would only get worse. Well unfortunately things got a whole lot worse after my operation last December. Has been hell on earth. Vomiting diarrhoea nausea pain. Have only started feeling better in the last 6 weeks. I also had a large cyst on my ovary which they neglected to tell me about when my stone was diagnosed. I now believe the cyst was a big part of my problem and not the stone. It's the one operation I will always regret but have to try and live with it now. The only hope I have is that there are many people who had problems for 12-18 months after the operation and it does settle down for most. Like everyone else I read all the horror stories before my op and said that wouldn't happen to me but it did and unfortunately I now know a lot of people who suffered afterwards but their bodies did adjust in time. I wish you well with your operation. Keep us posted on how it goes. Take care xx

19

Yeah, I have read a bunch of stories of people who have had horrendous side effects from the surgery, which is certainly a little offputting! I've had a few tests done, the US & MRI w/Contrast confirmed gallstones, and the endoscopy was clear. I asked for what I believe is the HIDA test, but was informed by my GP that it didn't exist, until I had him Google it, at which point he told me it wasn't something that was performed in the UK. I am considering going back to the GP and requesting more tests, but the surgeon was pretty confident. I'd thought about going private, but managed to see a well recommended surgeon pretty quickly on the NHS.

In all honesty, I feel like the removal depends on the level of pain, and interference to your daily life. I have at least 2 attacks per week which will sometimes keep me up all night, sometimes first thing in a morning, and both will render me useless the next day. I also just "lost" my summer job due to this, they sent me home because they didn't think my body could cope with the level of pain and stress. It makes it hard to work when I'm walking to work still in pain or have been up for 8 hours already in intense pain. I've lost so much weight that I'm practically 7 stone of pure muscle, and I have such a strenuous job, I don't know how much longer I can physically go on this way. So for me, even if there's only a 90% chance that this will stop the pain, I think I'm willing to risk the 10% of complications. But I know that it's not that cut and dry for everyone, and the pros and cons of any type of surgery should be weighed heavily. My main concern is that surgery may not stop the pain. 

I hope you manage to make an informed decision about what is right for you. I'm sorry your family were not afforded that luxury, I guess that's always one benefit of the NHS, they're less likely to chop things out since they're not taking your money! 

20

Wow, that does seem a little insane to have been recommended the surgery after only 6 weeks. Not that I doubt it was 6 weeks of hell for you!

As much as it's terrible, I do wonder what position you would be in now, if you'd left the stone to it's own devices especially if it was too big for them to do anything with? I literally don't know how I've made it through this past year with this pain, I've told several doctors and nurses that I truly feel this will kill me, either from the amount of painkillers I have to take to get it under control, or from when I throw myself out of my window after being unable to cope with the pain anymore! I'm mostly sarcastic, but my friends have now begun to use the "window" as a pain scale - "I'm on the ledge. I'm not about to jump, but I wouldn't be upset if someone were to push me!"

I do hope that your body manages to settle itself down, I guess it makes sense that they go a little haywire, it's a lot of readjusting after a surgery removing a whole organ! I'm so sorry to hear you've had complications, especially since there were things you were uninformed about. I hope that you continue to get better, if you've started to improve then perhaps you're over the worst and are starting to go on the up. My fingers are crossed for you