Another Gallbladder removal resulting in never ending pain

Digestive health
1

Thanks for reading firstly. I'm new to this site, my GP recommended it as a trusted reliable resource, and advised I should only use this site. I've been lurking for a while, but following an endoscopy this week I felt I would like to post.

In april 2013 I was diagnosed with Gallstones, following 18 months of misery. My Gallbladder was removed in August 2013. The surgery was Lap-col, it didnt go as smoothly as it could have, the surgeon was surprised by the position of my bile ducts and liver, saying they weren't where he expected them to be. My gallbladder was very diseased. Something was cut that shouldnt have been, and in my dopey post op state I dont recall what it was, I never saw my surgeon again as he left the hospital. It took 4months and 2more hospital stays for my wounds to close as they all became infected and had to be packed daily, then bi-daily till they were ready to close.

As the pain from the surgery died down, I noticed that I was still in a high level of pain, very very similar to the pain I had with the Gallstones; same location, lasting several hrs, nausious, high intensity, just completely typical gallstone pain, etc. I have now got constant diarrhea.

I was given a new consultant, who said it was just healing pains, come back in 3 months. I did, by now very certain that it wasn't healing pains.

In that time I changed my diet, I have gone completely low fat, and removed gluten. Ive done food diaries, nothing in particular seems to be a trigger food. The diarrhea still persists, but seems to be reduced to just the morning, as opposed to all day. My GP prescribed ora-morph, and codiene and both made the pain much much worse. I then went on to tramadol, and now Im on amitriptyline (no change in bm). I get days where I have diarrhea and no pain, but more than often a normal day involves an element of pain. Today is particually bad day for pain.

My LFT was checked and came back normal (which is a big releif as my mum and uncle have hemochromatosis). In the last 2 weeks I have had an MRI and endoscopy (biopsy for coeliac taken). I have no idea yet what the MRI has shown if anything, but the nurse who did my endoscopy did say that my stomach is full of bile. I cant really remember any other conversation with the nurse as I had been sedated. Im seeing my GP next week. No news as to when Im due to see my consultant.

Any thoughts? Im desperatly trying to not consult Dr google. I want to see my GP prepared, even more so with my consultant.

2

From previous entries a lot of people have problems after gall bladder removal. My op was straughtforward yet 7years later I am in pain often. Never quite the same as the original but friont and back and over the years growning in frequency and intensity. I was told originally it was healing tissue. Since thenthree doctors have diagnosed muscular strain aklthough I had done nothing physical and it comes on any place anytime.I have had a scan which revealed nothing.

Anyone out there had the same experience and actually found out what the problem was?

3

Having spent the last few hours reading, I can certainly see Im not alone in experiencing pain following the surgery. I would like to say I would be managing better without the surgery as I didnt have as many 'painful days' as I do now, although from what my surgeon said, given the condition of my gallbladder it would have to have been removed eventually.

My new consultant hasn't mentioned at all what he thinks it may be, which is possibly half of my frustration. I feel like ive made positive steps in changing diet and being a healthier person overall, and yet im still in pain.

I want to ask him about SOD, PCS and bile salts malsorbation (only stuff ive read on here), but he isnt the easiest to talk with, and dismisses a lot of things I say (my skin is always horribly itchy leading up to an attack of pain, I still pee bright yellow urine, despite drinking 2.5lts of water a day).

4

There are lots of discussion on here about "life after gallbladder removal" and I do wonder why no one is ever warned of so many complications that can follow it. It also seems that it is one of the few operations routinely carried out that you do have a follow up appointment for with the surgeon, I wonder why? I totally agree Emmalou, does movement or anything aggregate the pain further??

5

The only warning I was given from my surgeon was the risk of infection, which I ultimatly did suffer with. My surgeon left the hospital within a week of the surgery, so I never had a review. The only reason I saw a consultant again was because of the infections, and now he is 'lumbered' with me because of the pain and diarreah. Its not routine to a surgeon again at the hospital I was operated in sad

Strangely the only position that gives any relief is if Im bent forwards (almost like a labour position I suppose). The pain does not go completly at all, but it does offer some relief. Annoying that at 4am thats not a position that is easy to sleep in.

Apologies for the 'Woe is me' moment, but I am completely fed up, as I am sure many who suffer like this are, but it is taking over my life. Today has been a very bad day for pain

6

You are right Emmalou, the surgeons do brush over it as it's removal will solve everything. Like you I got an infection and had 5 days in hospital. I am about 6 weeks on and I don't get the pains as bad as I did but do still get some unpleasant stomach and back pains. I also get bad indigestion a lot of days which makes me "burp" a fair bit and I do have to go to the toilet at least three times a day. I really hope it starts to ease for you and I sympathise greatly.

If it is any consolation my discomfort has eased as time has gone on although I have a fair way to go yet.

7

Thanks for the replys. I'm 8 months on so never did I think this would be how life would be post op. I still don't have my MRI results and nor have I had any communication from my consultant. 

Im im seeing my gp this morning, and for a change I'm going to ask her questions that I'd normally not be brave enough to ask. Having had 5 days out of the last 8 where I physically haven't been able to eat I've kinda reached a tipping point. 

8

I was just reading this thread and wondered if your problems were ever resolved? Im only a week post surgery but having the same pains as before and can't eat.

9

Hi emmalou83

If your Doctor isn't listening to you and you don't feel comfortable talking to him, then you need to find a new doctor

10

I recall my op and NO mention even in leaflets of the absolute pain afterwards the only issue was apparently 1/250 can die or somet daft like that... The pain I suffer has now resulted in me losing about 4 stone, I cannot eat most foods , I can eat mashed potato,  soup not all types and not much else without sever pain as if GB was still there. I vomit frequently due to the pain and my surgeon said looks like you were right , maybe the gallbladder wasnt the problem, they found the bile ducts were enlarged and getting bigger, they stil do not know why, I itch all over due to bilirubin and its a living hell, People think I am bullimic when in fact I couldnt be further from that. My surgeon was an arrogant prig, wanted to get home early he was heard saying as he waltzed in late on morning of surgery. The scar is large and was amess Lap scar total 15 stitches in 5 points , I am so angry and think this will kill me prematurely and no one gives two hoots.. I was placed under specialist liver Doctor due to size of bile ducts, discahrged back to Dr arrogant told I will require scans every 6 months for 5 years that was 18 months ago still had none .... I wouldnt trust these doctors I think a vet could be the better option 

11

Karen, are you doing any better? I so feel for you! I'm only 3 1/2 weeks post op, but not much better than before the surgery. How is everyone else doing? Any better?

12

Hi Debbie, I had my GB out four years ago and I still suffer pain under my rib cage every single day. I've had scans and been back into hospital for the pain, but they almost make me feel like I'm wasting their time and it's all in my head. I'm typing this at 2:53am as I can not sleep due to the discomfort and this happens most nights. It's completely taken over my life and I almost wish I hadn't had it out in the first place. Pain is always worse at night and travels round my back and up my shoulder blade. 

13

This is so disheartening! Why do they not inform us of this before we have the surgery and let us decide? Did you have nausea or weakness before or after you had your surgery. Have they done any scans or scopes on you? I do not want to be like this forever. Do you have any other symptoms?

14

Hi Vanessa,  I sympathise with what you are going through.  I am 2 years post op and feel the same, I sometimes have good days where it's like a constant low level groan which I have learnt to live with in a way.  Other days  and especially evenings I have like a Sharp  object poking from inside my rib cage that seems like it's getting bigger, the pain spreads to my shoulder blade and hip bone.  I am rarely sick now but for three weeks per month I seem to spend a lot of mornings in the loo, I guess this is why I am not gaining any weight still and my eyes have dark circles which are often mistaken for black eyes.  My original pathetic excuse of a surgeon (NHS Private,  due to lack of Heptibilliary specialists being available) who my GP sent me to has never returned my calls.  The Dr that has been seeing me since I was first admitted post op decided last September that I needed to be investigated further and he was going back in and I was on the urgent list!  In January I had my pre op,  and apparently I was 11th on the urgent list and he wanted to do it himself,  ( due to heart problems they did need to collaborate with my cardiologist). It will be May/June time now,  they are looking for adhesions mainly I think.  Blood tests, scans have shown things up like enlarged bile duct, liver cysts, thickened colon etc but these have all been ruled out by further tests.  

Do you get really hot with the pain?  Do you get like funny bubbly noises too,  

could you ask your GP for a second opinion or referral elsewhere?  I feel for you I'm only two years post op,  I hope they do something soon,  you may not want to but get them chased up,  take care x

15

Hi emmalou, I went to my docs the other day re a gallstone of about 9mm which has not been too much trouble until I ate a whole pile of goats cheese in oil. How stupid was that!! Since, strangely, I am in no or little pain with gallstone and diverticulitis, my doc, now retired, has decided not to send me for removal of the gallbladder. I thought she was referring to bile salt ma sorting issues after the op. It she mentioned problems with the op itself such as what you mention. So it is known to the med profession that easy gb removal isn't all it's cracked up to be!

16

Bile salt malabsorption...

17

Hi Debbie, thanks for replying, I honestly feel so alone with this sometimes. I had CT scan and ultrasound and blood tests. All came back normal. Just had another night of very little sleep as nothing seems to work. I take a cocktail of pain meds before I go to bed and even tried 'calms' a herbal sleep remedy. I don't eat late at night but nothing works. I can't face going back to docs and going through all the procedures again because they just made me feel like I was attention seeking and nothing was wrong.....feeling particularly low this week so not coping as well as I usually do......just sick of it to be honest

18

hi boyzmummy my symptoms sounds the same as yours to be honest but I don't have any bowel problems. My pain is constant ache as you describe and night time is worse. I've tried so many things over the years but nothing seems to help. I have very little faith in the medical profession and am terrified of having any more ops after my gallbladder surgery experience. It was horrendous and I was in for a week with a drain in my tummy and drips.....the pain was worse than childbirth and I don't say that lightly. Took me months on tramadol to recover and had to be re admitted because of severe pain. Couldn't lie down flat for three weeks after. I have not been pain free since. Sick of it all and to make it worse, they make u feel like you are a time waster and nothing is wrong. Before my op, I had no other med problems and was fit and well

19

i forgot to mention that I don't get hot or hear any bubbly noises but everything else you describe is the same. Thanks for sharing your experience with me. It does help to know we are not going mad and the pain is real and we are not alone x

20

I am truly amazed how many people have problems after Gall Bladder removal. I'm 3 months post op and in constant pain. It feels like Gall Bladder attacks but I don't have one. I'm constantly sweating the pain is 24/7. My doctor put me on 100mg of Tramadol twice a day until I can see a specialist.

I had major complications with the surgery. I had stomach aspiration under anesthesia which lead to bilateral pneumonia, 7 days later I was diagnosed with Sepsis and almost died. I was in the hospital for a month, sent home with a nurse, and oxygen machine.

I'm 39, went into surgery with no other health problems. After being told this was a common surgery I'm totally heartbroken. I just wish this pain would go away.