Gallbladder Removal?

[KyleeR]

Hey MPN-ers 😊

It’s recently become recommended for me to have my gallbladder removed. Not really in any pain but sporadic discomfort and upon ultrasound it was discovered my gallbladder is full of stones 🥴

I’ve been reading up on some patients side affects after and the stress it puts on the liver.

Has anyone with ET JAK2 had their gallbladder removed? Any probs/cons you would like to share?

For context - 40 yr old fit and healthy, no overt symptoms from ET, only baby aspirin at present.

Thanks!

[Zingawinga]

I havent had my gallbladder removed, although I do get moderately severe biliary colic- but no stones on ultrasound.In my opinion, as a periop/surgical nurse with gallbladder patients every week, you dont really have a choice - if its full of stones, it needs out!

Elective (planned) surgery is a good option while your bloods are in feeling good order, rather than acutely.

I had a big op (breast) last year with no issues; incidentally it was my pre op bloods that picked up on platelets, leading to my ET diagnosis (59yr old kiwi ET/ JAK2).

Im on aspirin, and commenced Hydoxyurea 2 wks ago, feeling good

[Zingawinga in reply to Zingawinga]

*'fairly' not feeling!

[KyleeR in reply to Zingawinga]

Thanks for your reply 😊 my gastroenterologist has given me the option to wait and see if it gets worse or if I’m happy to he will remove it 🤷🏼‍♀️

My biggest concerns are the affects it will have on my liver after it’s removed and the flow affects from that. Some of the online patient feedback has got me feeling a little nervous now.

[hunter5582]

I have PV with thrombocytosis. I have had four surgeries in the last several years, including heart and brain surgery. The PV was a factor in performing the surgeries, but did not preclude surgery. I did experience reactive thrombocytosis after each procedure. The more the bleeding the greater the reactive thrombocytosis. This is a normal response and the platelet levels returned to baseline after recovery from the surgeries.

Suggest you review your case with a MPN Specialist to ensure an optimal outcome with any surgery, even a minor one.

All the best.

[KyleeR in reply to hunter5582]

thanks Hunter! Have pushed the gallbladder surgery out until I can see my Haematologist 😊

[Sunshine1932]

Hi

I don't have ET JAK2 but I have had my gallbladder out.

I was rushed to hospital as the pain was hideous. I had an infection as well as stones. They put me on a drip of antibiotics and the next day took my gallbladder out.

I was nieve and uneducated about the removal of the gallbladder and I wish to this day I never did.

I too am in my 40s and now I can not eat when I'm out in fear of diarrhea without much warning. If you have little discomfort I would decline having the removal and look more into how you can dissolve the stones.

The gallbladder is definitely needed for digestion so I honestly would only remove it in an emergency.

Dr Berg on YouTube has some amazing advice in general health but also how to heal things naturally.

Wish you well.

[KyleeR in reply to Sunshine1932]

Thank you! I will look up Dr Berg. I’m def seeing more and more of this as post-op side effects. I hope your doing better now 😊

[Maggie-ol]

Hi

I had my gall bladder removed 48 years ago after a year of excruciating pain and eventually hepatitis and an infected gall bladder. Aged 23 at the time my gp was telling me to put bran on my food and wouldn’t seem to believe me about how bad the pain was. It was only after an emergency admission to hospital and xrays etc I was believed and diagnosed. They kept me in hospital for 3 weeks until my gall bladder had “settled down” enough to remove.

The only dietary problem I have had since then is nausea after eating double cream. My advice would be - if your haematologist agrees- to have it removed

Margaret

[KyleeR in reply to Maggie-ol]

Thanks Margaret, really appreciate you sharing your experience 😊

[moo196]

mine was removed aged 32. I wouldn't hesitate personally.

[KyleeR in reply to moo196]

Any issues with your liver? Are you by any chance using interferon? Thank you for sharing 😊

[monarch5000]

Go talked into having mine out 13 years ago due to intermittent bouts of upper right quadrant abdominal pain, yet no gall stones. Was told "90% chance pain is from the gall bladder." Wrong. After removal the bouts of upper right quadrant abdominal pain were MORE frequent and intense. Tough way to learn not to blindly trust the judgement of doctors.

[KyleeR in reply to monarch5000]

Thanks for sharing your experience, I def have stones but not a huge amount of pain, only really discomfort. My major concern is if I have it removed and put more pressure on my liver what impact it will have on my ET in the future

[AndyT]

I have ET CALR and had my gallbladder removed in 2004 (aged 47 and only on aspirin at that time) due to polyps, which weren’t causing any problems but were considered large enough to be potentially malignant - after biopsy thankfully they weren’t!

Mine was an incidental discovery during a scan for my spleen size following ET diagnosis.

The keyhole surgery was very straightforward and I made a quick recovery from it, apart from some post-operative discomfort, mainly from the gas they use to inflate the abdominal cavity!

No major issues since, apart from an inability to easily digest anything too fatty, so I’ve cut down on things like cheese and red meat.

My liver function is monitored regularly as I’m on Pegasys and is generally OK, so I’m not aware of any liver problems linked to the lack of my gallbladder.

Hope your op goes well.

[KyleeR in reply to AndyT]

Thanks Andy! This is what has been on my mind, I’ve been reading lots of how if your gall bladder is removed it gives the liver more work to do to take over the job your gall bladder once did. And I suppose with the chance I will start on an interferon based treatment in the future what part that will play? What part will it play if I maybe need a bone marrow transplant? Having an MPN certainly adds a layer of complexity right!

Thank you for sharing your experience

[Meatloaf9]

My wife had to have her GB removed about 7 years ago. She suffered from biliary colic pains. No gallstones but HIDA scan showed almost no gallbladder function. I remember the surgeon we consulted saying the one thing you don't want to do is F (her exact word/letter) with the pancreas. A blocked duct can cause severe pancreatic problems. She had it out. She has occasional digestive problems such as nausea and upset stomach but nothing like she had prior to removal. I think there are post removal recommended diets. Doesn't bother her enough to follow a diet. No liver problems. I would ask the surgeon about possible problems from not having the GB removed, we are all different. Best to you in making your decision.

[Zingawinga in reply to Meatloaf9]

I agree. Pancreatitis is awful and can still kill people ocassionally. Have nursed some very unwell people with pancreatitis

[falconered53]

I am PVjack2 and had my gallbladder removed three years ago at age 74. A gallstone had wandered into the common duct and inflamed my pancreas. Major pain and emergency. Gallbladder had to come out. I had laparoscopic surgery and recovered in no time. No more issues. I haven't had to change my diet except to be moderate in my ice-cream consumption. I already had a tendency to diarrhea from HU. That did get worse for a few weeks but then it settled down. All told no regrets at all and so much better to remove the danger of another bout of pancreatitis, which can be very serious, even fatal.

Good luck to you,

[LIGEBA]

Hi KyleeR. I have JAK2/PV and only on aspirin & therapeutic phlebotomies. I had my gallbladder out about 35 years ago. Similar to someone else's response here, it was an emergent situation, was extremely infected and therefore I had a long stay in the hospital before they could even operate (due to the infection). The excruciating pain from the attack is right up there with kidney stone pain. When you get a bad attack you can't stand, sit, lay down, walk or do anything else that helps the pain.

After the surgery my liver enzymes were slightly elevated for several years along with a slightly enlarged liver, but nothing dr.s were alarmed about. Now everything with the liver is perfectly fine. I never had a problem with anything I ate afterwards.

I think it comes down to weighing the risk of having a major attack at an inopportune time (of course never a good time to get a gallbladder attack), and potential damage to your pancreas (which could be life-threatening). Hopefully your dr.s can give you the proper guidance for your specific situation.