Hey I was curious if anyone has had a G.I. tell them that they would have to remove their gallbladder or have had the surgery before? I’ve been in the hospital every six months for two years due to a cholangitis attack. My last one in July I had a G.I. I have never met before who did my E.R.C.P. he said that my pancreas was inflamed and there were debris in my gallbladder. After my procedure I was in intense pain. It felt like someone took two forks into my upper abdomen and tried to twist it like pasta. I had to have pain medicine immediately. I felt way better after pain medicine and they took my labs and whatever levels they were for determining pancreas inflammation, they were really high. By the next day I felt more back to normal and my levels were down just about to normal range. I left the next day with my only side effects being swollen legs that I took diuretics for.
I just had my appointment with the new G.I. and he said that my gallbladder has debris and now that we know it’s capable of having a large amount of debris, we know it can form stones, and we believe that is what caused your pancreatitis in the E.R. he then went on to say that in the future we may have to remove my gallbladder and that it’s a “high risk procedure but really not all that risky. But it puts a lot of stress on your liver.” He’s going to brainstorm with my regular G.I. and my liver specialist to determine if that is something I will need. I was curious if anyone has a story of how they got their gallbladder removed or if their doctor recommended it right when your gallbladder started showing signs of having debris?
Before being diagnosed with PSC, I had my gallbladder removed on Valentine’s Day, 2017 by a routine laparoscopic procedure. It went off without a hitch, but the cystic duct (tube that carries bile from the GB to the intestine) was so dilated, it was impossible to distinguish from the GB. I did great after the procedure but 10 days later had an emergency ERCP with sphincterotomy for retained gallstones (about a dozen). I was fine until September when I was hospitalized for severe abdominal pain. I was treated for cholangitis although all my liver function tests were normal and have been since the ERCP in 2017. The findings on MRCP were questionable until spring of 2018 when it was clear I had PSC findings-strictures and some fibrosis which is slowly progressing. Every 7-8 months I have some discomfort which goes away in a day and enzymes are normal at the time. Personally I believe have a very disease gallbladder along with a complex procedure to remove it were the triggers. I have no IBD but do have 2 autoimmune diseases - Graves’ disease (hyperthyroidism) and Raynaud’s syndrome (my hands turn red and hot occasionally). If I were in your shoes I would find more about the risks of surgery and also get a second opinion, and then have my GB removed. Good luck to you. Let us know how things were ok out.
Anne
Randall,
I’m sorry to hear you are having such a rough time of it. Just a couple of questions. What is your hepatologist stating about removing your gallbladder now? It sounds like your PSC is progressing and my team would not permit any abdominal surgery prior to transplant unless it was absolutely necessary ie emergency. I’d certainly make sure they were good with it before hand. Also, is the doctor performing your ERCP’s a specialist in advanced endoscopy or just a regular GI. There’s always the risk of pancreatis with or without stones, but it needs to be in the hands of a specialist who does these day in and day out. I always made sure the same doctor did mine each and every time. It’s like having a good mechanic, they know your car much better than anyone else.
Thanks for the response! I’m going to see my hepatologist in early October to go over what the G.I. said to me and what he feels is best. I’m going to get a second opinion from my main G.I. who has been doing my procedures for four years to see how he feels about it too. As far as him being a specialist in not really certain? The most I know is that he is a G.I. at the hospital I regularly go to. I was thinking the same thing, I thought it was strange he wanted to set me up for an abdomen procedure when I will have to do a liver transplant in the future at who knows when. And at the first sight of debris in my gallbladder. Not sure if that’s normal…
Randall -
In 2017 my PSC was diagnosed when an ERCP specialist removed a couple of gall stones and debris. During the procedure he saw “beading” of the bile ducts. A liver biopsy was inconclusive (they often are.) I wanted to be rid of my awful gallbladder pain, so my GI recommended the g-bladder removal along with another biopsy during surgery.
A lot of thought and consultation went into this procedure, but the outcome wasn’t good. Within 24 hours of surgery I was in the ER suffering from severe cholangitis and sepsis. I later learned, from well regarded hepatologist, that this surgery has to be approached with extra caution in a PSC patient. My PSC has progressed to the point that I’m now listed for a transplant - I’m pretty sure that’s a separate issue from the gallbladder removal, though.
For me, symptoms, a new diagnosis and related outcomes stacked up in a difficult way. But I’d be sure to get a second, or even a third opinion from hepatologists rather than GIs before you decide on this operation.
Good luck, and feel better!
Randal,
I completely agree with Sarah. It’s very important to only listen to a good Transplant hepatologist when making these decisions. Otherwise you could have a similar experience as Sarah or worse.
The best thing I ever did was start seeing a doctor who understood transplants and procedures I was dealing with with my PSC diagnosis. I was lucky in that the same thing happened to me with my GI recommending the surgery after an MRCP found several stones in the GB, however he was not a transplant expert.
That said, I had my gall bladder removed about 3 years post diagnosis of PSC. As I said above, I was told medium to large stones were present and that it needed to come out. That was when I first started urso. Attacks were about once every nine months back then.
I got it out shortly thereafter and the cholengitis attacks stayed roughly the same frequency, with structures and bile sludge replacing stones. ERCPs continues every six to nine months and twice yearly MRCPs. The ERCPs increased in frequency as the PSC progressed and also when I switched doctors who started using stents.
That said, this was 6 years before transplant and I had no overt complications from the gall bladder surgery aside from it not really doing much for the attacks or PSC.
Hey all,
I would like to thank everyone for your replys I greatly GREATLY appreciate it! I’m glad this forum exists and I can get help through here. I’m taking it all under consideration and will definitely be searching for second and third opinions like a few of you have said. I’m also going to try and get an opinion of a liver transplant Dr as well as someone previously suggested. Thank you so much for your answers!!!
Yup the pain is bad I agree . My docs said similar , you have sediment blocking your ducts . How come ? You want to ask .
Same answer every time “don’t know”.
As fast as it comes it goes then you get jaundiced for about a week .white poo treacle color pee.
Just drink loads more than normal to help flush salts away .
My advice forget G I get a proper hep doc .
And hang on to that gall bladder odds are 50/50 maybe it will be ok maybe it will be life changing .
I agree too that you really need the utmost specialist who deals with psc. My husband had a liver transplant a year ago with a lot of issues with his gallbladder. Many many issues and the good people of UCSF said no way. We will not remove the Gallbladder. Everyone is different but make sure you speak to a person that deals specifically with psc. Obviously during the transplant they removed the gallbladder. All is great now.
It was in the course of having my gallbladder removed that I found out I had PSC. I had a transplant 14 years after that. I personally would strongly consider getting yours removed because a poorly functioning gallbladder will only continue to cause you issues in the future. Of course get the opinion of your hepatologist, and ask them to help your choose a surgeon with the appropriate expertise if they feel you should go ahead with the surgery.
Once you have had pancreatitis once, you are more prone to getting it again. And having a bad gallbladder mucking everything up in there seems like it will increase the risk of pancreatitis in the future. I wouldn’t think the docs would want to leave it in there, but maybe they will.
Hey an update on things:
My G.I.(new main G.I.) doesn’t want to remove the gallbladder and I am now doing monthly labs and having a closer eye on my numbers to do ERCPs as preventative measure so I don’t keep getting infections.
My hepatologist sent a referral to the main transplant team for a liver transplant evaluation. I’m not sure what to think about it because he was very “I doubt anything’s going to come out of this but I’ll refer you” why am I going to go to an appointment for a full day evaluation to determine if I’m qualified and sick enough to be considered on the list if my main specialist isn’t even confident? At the very least I’ll get answers from the transplant team of how sick I would have to be and what I can do to prolong the procedure if that’s what they want from me. My MELD Score is consistently 15 all year and higher when I get into the ER. My hepatologist referred me because I’ve been sick so much this year. About five? I want to say hospitalizations where I’ve had to be admitted into the hospital.
So far feeling stable. My legs are swelled up though. I feel like even trying hard to keep it under 2000mg I’m still swollen. Probably twice a month I go over and probably reach more like 2400mg. At my worst I think I did 3000 and regretted it but not going to lie I go over sometimes because it’s difficult for me to keep it under 2000. I’m hoping the nutritionist can give me more help on how to keep that down. Thanks for all your comments and support!
Randall
Randall,
Do by all means go for the transplant evaluation if they can get it set up. I was actually evaluated and listed for transplant with a MELD 12. It climbed quickly from there over 7 month period to 36. Things can move fast, slow or not at all. It’s not a waste and will give the team a better idea of how prepared your body is for the transplant when needed. I wish you the very best!
New update. Went through my phase evaluation and they said I’m a great candidate for liver transplant. It’s pretty overwhelming I didn’t know it’d be so soon I half expected them to say no but on Monday I’ll have a call about all the appointments I’ll need to go to in order to complete my phase two evaluation and then be signed up for the liver transplant list.
Congratulations Randall. I hope all the transplant evaluations go well and that you get listed soon. It certainly changes your life after that transplant for the good. Take care and let us know how things went.
