I am unsure if I should have my gallbladder removed or not

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I posted a few months ago about some problems I was having with my gallbladder and gallstones. I ended up in hospital for a week in December with pancreatitis caused by gallstones. I have been pain-free since December but I still have gallstones in my gallbladder according to a MRI scan I had recently. I am currently waiting for a cholecystectomy. I have the preoperative appointment coming up soon, so the surgery will probably happen a few weeks after that. I am having some doubts about whether I should have the surgery. I have read multiple testimonies online from people who have had their gallbladders removed and are now suffering chronic health problems as a result. I am also worried about the surgery itself. I am balancing those fears against the possibility that the pain from the gallstones will return and I will end up in hospital again. The pain was the worst I have ever experienced. Would you have the surgery in my situation? I am not sure what to do.

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  • Posted

    I am in the same situation as you. I have multiple mobile gallstones upto 1.5 cms. I havent had the intense pain though, instead I suffer with chronic issues, started with IBS D in July last year and then reflux In september and then bloated, gas, achy bruised right rib feeling, pain with gas after eating in the evening, on and off reflux and explosive bowels now, tummy making a LOT of noises and huge weight loss ( cannot seem too put weight on, likely due to all the food groups I have had to cut out to maintain symptoms to a minimum) I am awaiting a surgery date but like you have read over and over all the horror stories and am truly scared. I am scared of the surgery, something going wrong and ending up worse. I know several family members/friends who have had theirs removed and not a single one has issues, so I had no idea that it could cause issues until the internet groups.

    Like you I feel like at the moment its tolerable, but I also worry about it getting worse and edning up an emergency.

    I have also however read a lot who did not have it removed and ended up in emergency, with adhesions, with cancer, with pancreas damage or liver damage, infections and rupture, so this also scares me into thinking surgery will be for the best and I have to deal with whatever hand I am dealth afterwards. A lot on my health forums claim to have fixed theirs with natural methods, but I have tried and failed and get told when i post that I will ruin my life forever and get cancer removing it, so I am trying not to post on there at the moment.

    I have had scans ( full CT) and cameras top and bottom to rule out any other cause so I can go in knowing its the gallbladder. This makes me feel better as I know I have little choice. I have worked alongside 2 naturopaths now since October and taken heaps of herbal meds, chanca piedra and other tonics, too no avail ( scans show stones exactly the same taken several months apart) My symptoms have been 'mild' for a few months now, so it does make it harder to go ahead though.

    I am currently taking ox bile, digestive enymes, beet powder, liver herbals, drink my dandelion and papaya tea as I always have and keep my fermented foods up but have to eat whatever I can to minimise symptoms and wait ( my diet was so much healthier before all this!)

  • Posted

    I am truly sorry to read of your problems.  I have 3 cancers besides being

    diagnois with gall bladder @ month ago.  2 cancers are in remission due to

    surgery.  You did not mention your age bracket...and that may have some bearing on your decision.  I am a senior and surgery is iffy so I am went on a low fat diet and I will stick with it until I cannot function on that alone.  I also read that probably ONLY

    those who had or are having problems with surgeries are the ones who comment

    on this site.  Those who came thru surgery with success have No need to comment...so

    I cannot advise...except to say as long as you can function without surgery do so

    otherwise (except for your age) surgery appears to be the answer.  No one is

    the same so get a 2nd opinion by a doctor if possible and go from there.

    Good luck!!

  • Posted

    Hello

    Everyone is different but my 21 year old daughter had her GB removed Jan 2017 & has now got Sphincter of Oddi Disfunction level 3 & has been unable to work or go out since the op due to pain & sickness.

    In A&E & with the specialist she has requested a Gallbladder transplant back in, as her life is ruined quite honesty.

    The transplant can't be done, so she is on serious amounts of pain relief anti sick & can not eat or drink properly they are giving her another round of Botox next Tuesday into the Oddi muscle to see if that helps more on the second go last one lasted 3 weeks only.

    It seems you are either reasonably ok after GB removal or really not.

    If we knew then what we do now she said she would of put up with the attacks rather than be this debilitated.

    I think you have to be right at the end of not being able to take the attacks prior to this but as I said no one knows until after how they will be.

    She has seen 3 specialists & none came stop the pain so she goes to another specialist on the 23/5 and that will be to discuss Fentanyl Buccal tablets 200 seriously strong pain relief to see if that gives her a chance of normal again.

    It's a vicious circle, the attacks are awful but if they are not all the time I'd hold off as long as you could with better pain meds at home for when an attack happens.

    Ask every question you can of your surgeon.

    Xx

    • Posted

      Hi Carol,

      I am so sorry to learn that your daughter is still suffering with this!  I had hoped that she would get lasting relief from the botox injections.  xx

    • Posted

      Hi Lynda

      No sadly worse after it wore off lasted about 3 weeks, she has nothing showing up on blood tests but once the Oddi spasms that's it's without a gallbladder there is nowhere for the acid to go but it all backs up into the liver & pancreas via all the ducts then via her oesophageal tracts food in is becoming impossible again, next Botox under general anesthetiser on Tuesday then hopefully stable enough by the following Tuesday to get to the specialist in London, that's her last hope if I'm honest as nobody can come up with a way forward for her. Incredible as it is factually all a result of the GB coming out one surgeon said if the body can't cope without the GB this is what happens and there is no fix better option would of been to leave it until the attacks couldn't be managed by pain meds, they won't cut the muscle as they are certain that will cause pancreatitis without a doubt.

      Keeping everything crossed for the 23/5 meeting as her job needs an update & outcome for her future by then as well.

      So awful :-(

      Hope you are feeling a bit better now xx

    • Posted

      So, the SOD dysfunction causes the pain, and also releases too much bile, correct? I'm not an MD, as you know, but have they suggested a bile acid binder?  Just wondering....

    • Posted

      Once a gallbladder is removed the acid bile drips continually as it doesn't have anywhere to go that's the gallbladders job to hold it and release it at intervals.

      So it can back up as it's a lot the body produces and the little Oddi muscle struggles with the constant volume and spasms shut.

      The slitting can work but then scar tissue & pancreatitis is very high risk, so not an option now as my daughter is too young.

      Tried the binding & then It just made it harder to digest and get through the muscle, more pain sadly.

      Botox worked but not as well or for as long as we hoped, we will see if the second lot does better but hopefully the specialist will put her on the same medication as the nurse and she can test that and see if it works for her , that would be great .

      You really are fixed after GB or struggling so unfair.

    • Posted

      I hope the second round of botox works better!  I am just so sorry that your daughter is in so much pain without relief! xx
    • Posted

      Carol, please look at the blog hormonesmatter

      the lady who discusses this issues had 

      transduodenal sphincteroplasty–a major abdominal surgery to sew my sphincters permanently open. this worked for her and put her in remission after cutting the sphincter failed.

    • Posted

      I have also been researching this and from what I can tell, people are most often diagnosed after GB removal as it wasnt the GB in the first place but the sphincter, mimicking GB pain, so excalates afterwards, but still researching this currently.
    • Posted

      Hello Star

      THANK YOU so much I will take this with us to the specialist on Tuesday.

      Can't thank you enough for this at least now she is going armed with 3 options rather than nothing at all .

      Chronic pain is a lonely place to be as so many Drs don't like it if they can't fix it or don't understand why it's so complicated SOD, we had never heard of it and so so many people are suffering it's so life changing and debilitating but we will keep you posted, I've recorded her on the way to the A&E so they can hear how bad it is in an attack as obviously she won't have one while there, due to not eating for the journey & all the medication to get there, Iv also filmed her on my phone so they can see ho fast it comes on and the volume of vomiting that goes with it, I played the voice recording on the way to A&E to her boss, he was totally silent just couldn't believe the severity of the pain he was hearing & how utterly desperate she is for someone to help her, . As people with SOD know if your not having an attack you look relatively normal so people think how can it be that bad & she puts on a brace face so I wanted him to hear the truth.

      Awful illness.

      Thank you Star just a little bit more hope now.

      Kindest regards

      Carol xx

    • Posted

      its moderating my last post! not sure why as I didnt put the web page, but check out the  The Sphincter of Oddi Dysfunction Awareness and Education Network, this is what she overruns and has a fb group and support group x

      her questions and answers say a lot of people in the proffesional field dont think its a real, and even  a mental issue,  but its very real and debilitating and can lead to long term medical issues.

      I wish you all the best and keep us posted how she gets on xxxx

      thinking of you both.

    • Posted

      she has a book and she is called Brooke Keefir.
    • Posted

      Brooke Keefer!
    • Posted

      Hi Carol,

      Just wanted to check in and see how your daughter is doing! xx

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