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Gallstones after gallbladder removal, excruciating pain.

(14 Posts)
SteX Tue 06-Feb-18 22:28:20

I had emergency surgery in Oct last year to remove my gallbladder after repeat episodes of gallstones, and a massive one being stuck during ultrasound that triggered emergency surgery.

However since removal, I've had numerous episodes of the EXACT symptoms of choledocholithiasis (gallstones). I've been to both GP and A&E with this and the tentative diagnosis is "Post Cholecystectomy Syndrome" - the same symptoms of a gallstone. They "could" widen my main duct to allow more room for gallstones, however my senior consultant estimates risk of duct rupture at 50/50 and risk of death if this happens as "flip a coin". So I'm understandably cautious and don't know what to do...

I'm taking Tramadol, Oramorph, Naproxen at home like candy and they barely touch the abdo pain - it's excruciating. Only thing that actually helps is IV Morphine/Fentanyl in hospital (which they understandably are cautious about giving).

I'm having 2-3 serious attacks a month, they last between a few hours to 3-4 days.

Has anyone else been through this? Help sad

moosemama Wed 07-Feb-18 07:17:15

Have they considered Sphincter of Oddi Dysfunction at all?

I had my gallbladder out last July and have started getting pains again, although nowhere near as severe, yet, but I know my bile duct was flushed and I was scanned on the operating table and definitely clear of stones. Apparently it’s extremely rare to keep producing stones in your ducts post cholecystectomy and most cases are due to missed stones due to surgery. What tests have you had done to confirm the presence of new stones?

Prior to my cholecystectomy I had sphincterotomy during an ERCP, using the needle knife method, because my SOD refused to open (possibly because I have autonomic dysfunction) and was stopping the flow of bile and stones. I was told it may heal up at some point, so I’m wondering about scar tissue or just back up of bile if it isn’t allowing a decent flow of bile.

It may be worth asking about whether or not it could be SOD, as there are various things they can try if it is.

Also, if it is, opiates - more specifically cocodamol and tramadol can both trigger and make the pain worse. study

SteX Wed 07-Feb-18 20:00:04

Hi @moosemama

Sorry for slow reply.

They've done ultrasound, CTx2 and MRCP. Their confidence is it's either new stones, bits of cholesterol or bile sludge aggravating and causing the symptoms hence the frequency.

They've said they would perform a sphincterotomy during the stent procedure.

One major problem is I've advised them if they intend to do this via ERCP rather than laparoscopically then I need general anaesthesia or I will not consent.

moosemama Wed 07-Feb-18 20:41:49

I take it you have had an ERCP before. I didn’t tell you about my experience just in case - suffice to say I would never do it again without a general either.

I really feel for you, it’s must be awful to continue having severe symptoms after you’ve had a cholecystectomy. My pain is fairly minor compared to the gallstones and pancreatitis - yours sounds horrendous.

Can they try a sphincterotomy first and then do the stent later if that doesn’t help? Just thinking of that 50/50 risk of duct rupture.

SteX Wed 07-Feb-18 22:41:26

Not had ERCP, but have had an endoscopy. Was kind of forced into it - was much younger. I have lots of trauma inc sexual from childhood, the mere thought of an ERCP scares me shitless.

Yeah, the pain is truly excruciating. I have other pain-causing conditions too inc severe joint pain. Had a bad attack this afternoon, short one thankfully, but was on bed in foetal position.

Sphincterotomy first could be an option to discuss, but would need to be under GA. I guess costing would say if administering a general just stent at the same time!

At same time, I have huge problems with male HCPs - there's been ONE in 25 years I've trusted. Oh, and I need diazepam if a procedure is to be done by a female, even if going down for GA. I had a wonderful childhood.....

What was your ERCP experience anyway, I'm interested now!! @moosemama

AnnaMagnani Wed 07-Feb-18 22:51:55

Was also going to ask about Sphincter of Oddi dysfunction.

Also when exactly do you get you pain and is there any chance that the pain relief they give you, doesn't only not work but possibly makes it worse?

Since I had my gallbladder out I have Sphincter of Oddi Dysfunction after taking codeine - exact same symptoms as gallstones, excruciating abdo and RUQ pain + in my shoulder but also in my shoulder. Bang on 30 minutes after taking the codeine.

Codeine works by being metabolized to morphine... so if you are in the same situation as me, there is a fair chance that the pain relief they are giving you is constricting your sphincter of Oddi and actually giving you the pain.

I would now be very nervous of ever having morphine but (being a pain specialist in real life and having had to research this) oxycodone does not cause the same constriction of the sphincter of Oddi and I would insist on this if I ever needed a strong analgesic such as morphine.

Anyway I think it would be worth trying different analgesia (oxycodone) to check that your current analgesia isn't causing or prolonging your agony.

SteX Wed 07-Feb-18 23:14:20

Interesting points Anna.

I implemented a very low fat diet prior to my appendicectomy, so well in advance of gallbladder issues starting.

I've done much research into pain medication etc., I also have severe M.E (bedbound, wheelchair, severe joint pain, confusion) that stereotypes lots of HCPs.

I did have the problem with codeine, yes. EXACTLY as you describe. My GP is pretty fab and switched me to Tramadol that doesn't cause the metabolic reaction. However, it doesn't touch the pain either. I took six in one dose once  did NOTHING. GP prescribes Oramorph that does touch the pain, but then makes the attack worse.

I'd love to be able to go to my GP, or when I see my surgeon probably a couple months or so, with a solid plan I've formed.

Let's face it, these attacks screw up life and reallllllly hurt. Worst pain I've ever had..

So, how do I get my GP to switch Tramadol to Oxycodone, and to realise Oramorph isn't a solution? ;)

Thanks for posting @AnnaMagnani , very helpful smile

moosemama Thu 08-Feb-18 07:24:28

I am not going to worry you with my ERCP story, as it was due in part to them not knowing about my SOD issue and also in part to another condition I have, so very unlikely to happen to someone else. Most people I know that have had it done have had it under light sedation and been absolutely fine. I can totally understand your reasons for not wanting it done without a GA though.

SteX Thu 08-Feb-18 07:35:58

Have decided I'm making GP "on-the-day" appointment when they open, thanks to you, and Anna, posting here.

Can't go on like this, that's for sure. Even if I can get Oxycodone instead of Oramorph just until I get "sorted"...

SteX Thu 08-Feb-18 08:36:07

Fuckity fuck fuck.

Usual GP fully booked, so am seeing a male (this is going to be fun...) I've never seen previously (even more fun....). No doubt he'll want to prod my abdo too, hope I don't have a full-blown panic attack on the table...

Now I'm REALLY stressed... 10:30 here I come...

moosemama Thu 08-Feb-18 10:20:08

Probably too late now. But thinking of you.

Good luck.

SteX Thu 08-Feb-18 11:58:58

Haha.

Waste of time. Don't think I've mentioned I've long-standing M.E, rolled in, in my wheelchair.

All he was interested in was my M.E, he had me on the table for an examination, if you can call it that...with one finger he lightly tapped LUQ, LLQ, RUQ, RLQ.

Apparently these biliary attacks are formed as a result of my history of chronic pain, and thus it's all in my head and I should talk to a therapist.

He also prescribed me zero medication, including my repeat, which means I basically have to suffer until Monday when I can (hopefully) get in to see my usual. Her first prebookable is end of month so I've tagged that just in case.

I have no idea at all what I do now though, had an attack through the night, and more are surely due given history.

Am well pissed off.

notanurse2017 Thu 08-Feb-18 12:09:08

This sounds awful, Op. Have a look at the Bile Reflux Support Group on Facebook, I think that you might find it useful.

moosemama Thu 08-Feb-18 12:31:27

Oh that makes me so mad.

My son had HSD and every blooming dr we see wants to do a Beighton Score on him, hyperextending all his joints till he’s in agony. They are always more interested in that than whatever he’s actually got the appointment for and usually leave him in serious pain for days after. (I now refuse to let them do it, unless it’s actually relevant to what we’re there for.)

We then have these non-specialist or drs with a completely different specialism announcing he’s not hypermobile, despite being diagnosed by a Rheumatologist, under Physio for years due to his severity and having multi-systemic involvement for which he sees numerous ‘relevant’ specialists. The Paed in A&E last time told him he's not hyper-mobile because he couldn’t bend his thumb backwards, never mind the fact she was attempting to bend it in the wrong direction. angry

I hope you can see your other GP on Monday. We are very lucky, as we have one GP who always tells me that I know more about mine and my son’s condition than she does, so is willing to listen, be open, try things and take advice. Unfortunately she is due to go on maternity leave shortly - I’m dreading her not being there.

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