Cholecystitis, then cholecystectomy & still bowel issues

[d_a_n1979]

Back story: I ended up in A&E and then a week in hospital via SAU late May 2023 due to a liver reaction to a previous general 2 weeks before (for an op) and it wasn't fun! I was in sever pain; I was jaundiced badly and had to hammer IV antibiotics & pain killers for a good week before they'd release me, as my levels were that high!

Anyways got home; booked in for the cholecystectomy 6 weeks later and 30th June, in and out in the day with no gallbladder...

Unfortunately since then (we did think it could be to do with all the bloody pain killers I'd been on, as well as antibiotics beforehand) that caused the bowel issues etc; which I was off by then, that my bowels were just constantly on overdrive...

They calmed down somewhat between mid July and mid September, but unfortunately they started to misbehave again

Unfortunately the underlying issue that caused me to have my 1st op, came back and I was straight back onto strong painkillers as well as naproxen since mid October and after a further CT scan and MRI; the final op for mid Jan 2024 was booked...

Being back on the dihydrocodeine slowed my bowels down, as it does, and I had few issues; great! That part of my life wasn't as bad...

But now I'm off everything after my op mid Jan and then 5 weeks of weening myself off the drugs; my bowels are on overdrive again and very much affected by the amount of bile acid my body's creating... It's wearing me down unfortunately

My diet is very simple now; little fats (still have to have some fats as they're needed), plenty of fibre (within reason, not too much etc); no alcohol, no spice, no tomato based foods etc. Yet I'm still suffering and it can, at times, completely wipe me out...

Has anyone else suffered with this after their gallbladder removal? How did you sort it in the end or are you still having issues?

I'm desperate to not to go to the GP and go back onto more meds; I really want to avoid that if I can. I'm going to see the old dears at the Health Food shop in Preston this weekend as they're great for all things natural, but I'm not massively hopeful TBH

[g3org3y]

Bile acid malabsorption? Can happen post cholecystectomy.

This can help: https://bnf.nice.org.uk/drugs/colesevelam-hydrochl...

Defo worth having a chat with your GP IMO.

[d_a_n1979]

g3org3y said:

Bile acid malabsorption? Can happen post cholecystectomy.

This can help: https://bnf.nice.org.uk/drugs/colesevelam-hydrochl...

Defo worth having a chat with your GP IMO.

That's one thing I'm trying to avoid currently, as they're a shower of ste at the best of times and will do anything to fob you off (all my ops bar the gallbladder were private)

I want to try and sort this naturally/via diet before I approach the medication side of things; my body's had enough of a battering over the last 3 years!

[g3org3y]

d_a_n1979 said:

That's one thing I'm trying to avoid currently, as they're a shower of ste at the best of times and will do anything to fob you off (all my ops bar the gallbladder were private)

I want to try and sort this naturally/via diet before I approach the medication side of things; my body's had enough of a battering over the last 3 years!

That's fair enough. Hope you can get it sorted. Sounds like it hasn't been the best of times of late.

[d_a_n1979]

g3org3y said:

d_a_n1979 said:

That's one thing I'm trying to avoid currently, as they're a shower of ste at the best of times and will do anything to fob you off (all my ops bar the gallbladder were private)

I want to try and sort this naturally/via diet before I approach the medication side of things; my body's had enough of a battering over the last 3 years!

That's fair enough. Hope you can get it sorted. Sounds like it hasn't been the best of times of late.

It's not been fun; but is what it is and on the right side of it all now... Just need to get this last niggle sorted!

[Biglips]

Could be a few things. You definitely need to talk to your GP even if you don’t want to

As stated bile salt diarrhoea is not uncommon post Cholecystectomy and responds to bile acid sequestration medications.

Another diagnosis to consider is whether your pancreas was affected during your original presentation and you have been left with pancreatic exocrine insufficiency. You need a stool test for elastase.

You might need repeat imaging too - US or MRI if not settling.

Good luck

[Johnniem]

Sorry to hear all this OP! I had a gall bladder removed about 6 years ago (I asked the surgeon pre op whether they would just use a method of breaking up the calcification in the gall bladder but he said 'we never do that anymore). Anyway, the gall bladder got removed and I am amongst the very low percentage of people that get the runny tummy effect post operatively. I was prescribed cholestyramine powder (to be taken after each meal - almost impossible when one is out and about with work etc). It's not ideal but it does help. I am truly fed up with it and have got to know all the venues where one might be able to use lavatories around my place of work when I have to be out and about!

I have now decided to have another consultation with my GP and ask for a referral to a proctologist as I am concerned there may be something else going on. I wish you luck with you various issues but you are not alone fella!

JM

[d_a_n1979]

Johnniem said:

Sorry to hear all this OP! I had a gall bladder removed about 6 years ago (I asked the surgeon pre op whether they would just use a method of breaking up the calcification in the gall bladder but he said 'we never do that anymore). Anyway, the gall bladder got removed and I am amongst the very low percentage of people that get the runny tummy effect post operatively. I was prescribed cholestyramine powder (to be taken after each meal - almost impossible when one is out and about with work etc). It's not ideal but it does help. I am truly fed up with it and have got to know all the venues where one might be able to use lavatories around my place of work when I have to be out and about!

I have now decided to have another consultation with my GP and ask for a referral to a proctologist as I am concerned there may be something else going on. I wish you luck with you various issues but you are not alone fella!

JM

Thanks for your input; it's cholestyramine that obviously I've seen and read about, so it is in the back of my mind to discuss with the GP if/when I decide to go down that route

I'm very fortunate that I work from home & for the business that I do, they've been hugely supportive etc with my operations and then the holiday in hospital last year; I carried on working whilst on my hospital bed; I'd nowt else to do

But I would like to get to an end with this; it really does wear me out...

I'll see how the next few weeks go with more rigorous diet control and if that's not making any improvements, then off to the GP I'll go

[Johnniem]

d_a_n1979 said:

Thanks for your input; it's cholestyramine that obviously I've seen and read about, so it is in the back of my mind to discuss with the GP if/when I decide to go down that route

I'm very fortunate that I work from home & for the business that I do, they've been hugely supportive etc with my operations and then the holiday in hospital last year; I carried on working whilst on my hospital bed; I'd nowt else to do

But I would like to get to an end with this; it really does wear me out...

I'll see how the next few weeks go with more rigorous diet control and if that's not making any improvements, then off to the GP I'll go

For persistent 'issues' when I am out and about (on holiday or a day trip for instance) Immodium melts are really really good! They are tiny and just melt on the tongue so no need for a glass of water to take them.

[d_a_n1979]

Johnniem said:

d_a_n1979 said:

Thanks for your input; it's cholestyramine that obviously I've seen and read about, so it is in the back of my mind to discuss with the GP if/when I decide to go down that route

I'm very fortunate that I work from home & for the business that I do, they've been hugely supportive etc with my operations and then the holiday in hospital last year; I carried on working whilst on my hospital bed; I'd nowt else to do

But I would like to get to an end with this; it really does wear me out...

I'll see how the next few weeks go with more rigorous diet control and if that's not making any improvements, then off to the GP I'll go

For persistent 'issues' when I am out and about (on holiday or a day trip for instance) Immodium melts are really really good! They are tiny and just melt on the tongue so no need for a glass of water to take them.

Yes we've got them in; unfortunately the after affects of those, for me, re just as bad (ie they bung me up and then a few days later...........)

I try to avoid anything like that at all costs.

When I was taking dihydrocodeine for the pain with the main issues I was having; my bowels were never an issue; the slowing down of my bowels really helped...

That's the sod of it all!

[anonymous-user]

d_a_n1979 said:

g3org3y said:

Bile acid malabsorption? Can happen post cholecystectomy.

This can help: https://bnf.nice.org.uk/drugs/colesevelam-hydrochl...

Defo worth having a chat with your GP IMO.

That's one thing I'm trying to avoid currently, as they're a shower of ste at the best of times and will do anything to fob you off (all my ops bar the gallbladder were private)

I want to try and sort this naturally/via diet before I approach the medication side of things; my body's had enough of a battering over the last 3 years!

Colesevelam has been a god send. It's a soft drug as well so it wont ruin your body. I suffered literally for decades (!) and was worse after my GB removal. Doc put me onto this and is very effective, you really must try it.

[d_a_n1979]

pocketspring said:

d_a_n1979 said:

g3org3y said:

Bile acid malabsorption? Can happen post cholecystectomy.

This can help: https://bnf.nice.org.uk/drugs/colesevelam-hydrochl...

Defo worth having a chat with your GP IMO.

That's one thing I'm trying to avoid currently, as they're a shower of ste at the best of times and will do anything to fob you off (all my ops bar the gallbladder were private)

I want to try and sort this naturally/via diet before I approach the medication side of things; my body's had enough of a battering over the last 3 years!

Colesevelam has been a god send. It's a soft drug as well so it wont ruin your body. I suffered literally for decades (!) and was worse after my GB removal. Doc put me onto this and is very effective, you really must try it.

Thanks for that; not come across that one, added to my list

[d_a_n1979]

Just to update this - managed, finally to get to see the GP today (no idea who he was, never seen him before). But, he was good, listened, took on board what I had to say/how much it's causing me issues/what I'm suffering with/how it's putting a stop to leading a normal life, again etc..

He's referred me straight to the specialist as an urgent case (thankfully); so now waiting to hear from them

The GPs aren't able to prescribe the medication we both spoke about; that has to be done by the specialists etc. So fingers crossed I hear sooner rather than later as unfortunately the symptoms (nausea, pain in upper right quadrant and constantly on the loo) have gotten worse...

I'm down 3kg in bodyweight since Friday (not good)! But that's through lack of eating as I've just no appetite; hence why I'm not training as I feel lousy at all times

[dudleybloke]

I found Naproxen gave me a very bad stomach even when taking laxamisomthing(can't remember the full name) to help with stomach problems.
I ended up just taking co-codemol(30mg) and that did the job of making things bearable.

[d_a_n1979]

dudleybloke said:

I found Naproxen gave me a very bad stomach even when taking laxamisomthing(can't remember the full name) to help with stomach problems.
I ended up just taking co-codemol(30mg) and that did the job of making things bearable.

I was on Naproxen and dihydrocodeine for the other issues; but off them both completely now and zero issues...

This is all relating to PCS unfortunately

[d_a_n1979]

Just to update this

Saw the specialist via the NHS yesterday; been prescribed cholestyramine 4g per day; will take that for the next 3-4 weeks and see how that goes.

In that time I should hear re an MRI referral and get that done and dusted as the specialist agrees that it sounds like I've PCS and potentially a stone(s) in there somewhere due to the pain I'm in, but also the other symptoms are all part n parcel as well!

Hoping that the NHS prove me wrong with the timescales I've been told; otherwise if I get faffed about I'll have to consider going private again

[d_a_n1979]

Another update on this; have my MRI booked in for 2 weeks this Tuesday just gone; will see what comes of what/what the results are and take it from there

If I do have stones in there somewhere causing these issues then a procedure will have to be carried out; my hopes not high with the NHS, so it may be something I decide to pay for (again) and get it done privately as I cannot keep waiting/my lifes on hold yet again

The Cholestyramine seems to be doing something; but it's not helping as much as I'd hoped; still feel quite nauseous before/after eating and I'm still losing weight as the fuel simply isn't going in...