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My life is a nightmare since GB surgery

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Leni75
Leni75

Hi. I had my gallbladder surgery 15 months ago and it has been the most frighten time of my life. I live day to day in pain, fear, anxiety, hopeless, down. If it wasn't for my 16 month old baby I wouldn't want to live no more I think.

It started with painful  esophageal spasms ,chest / stomach burning for over a year.  All this time I was constantly worried and saw lots of doctors. Finally when I thought I was getting better I start having weird abdominal pain with lots of nausea, which  has been diagnosed as inflammation in the stomach area. Taking PPI at the moment. I'm so worried again because I read it can be bile gastritis which is chronic sad and very painful. I forgot to say I had a MRI two weeks prior before pain started and it was normal?!

Has anyone got gastritis a year or so after cholecystectomy and found out bile was the cause? If so, how is it treated and does it work? I read it's hard to treat it, and diet doesn't help either. I can't sleep I'm so nauseated and worried. It seems I am not going to be normal ever again. I only wish that this is only a nightmare I'm about to wake up from.. Thank you.

 

4 likes, 76 replies

76 Replies

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  • sarah87162
    sarah87162 Leni75

    Posted

    I had my gallbladder removed in April last year due to gallstones.

    I still have pain.

    I have recently been diagnosed with a hiatus hernia.

    I have to have bloods taken next week and if the blood count is still raised my GP says that is an indication that I have a stone stuck in my bile duct.

    Having said all that I am better than I was and all this is liveable with

    Take care and keep in touch

    Praying for you

    Sarah xxx

    • Leni75
      Leni75 sarah87162

      Posted

      Hi Sarah

      The doctor I'm seeing next week sent me last year to do a MRI scan to look for any stones left in bile duct or other abnormalities. It came back normal. I also had tests to check any acid reflux and hernias in my esophagus. All came back normal. My surgeon last time I saw him which was May last year, told me he couldn't do anything else for me after my reflux tests came back normal. My GP was the one that referred me to another specialist which I saw in August. He sent me for a MRI scan a thing my surgeon never did. I'm seeing this other doctor again  next week and I'll tell him I'm with a lot of abdominal pain even though the scan show nothing abnormal. We need to find out the real cause of this inflammation in stomach. It's really running my life and I have such a small child that is so beautiful...

       

  • elizabeth0612
    elizabeth0612 Leni75

    Posted

    Have you heard of meridian testing?  Its from a natureopathic doctor. I went to one  a week after my surgery, to access my health afterwards. I only showed some fungus in liver and stomach.  They can find if you have bacteria, viruses, metals, fungus, or toxins in your system.. I have gone to one for 3 years off and on. A natural alternative to finding what is ailing our body when regular doctors cant.  I had a virus in my uterus that caused me pain for years, and doctors couldnt find a reason for my pain. Meridian testing did, after 6 months of treating with holistic drops, I rid the virus, and the pain.  Just throwing this idea at you.  
    • Leni75
      Leni75 elizabeth0612

      Posted

      No I've never heard about meridian test. Thank you for the idea. I might try that if I can find someone in this area I live that do it. I believe that many times natural approaches can help a lot too. 
  • LittleMissDolly
    LittleMissDolly Leni75

    Edited

    I had my gallbladder removed in August 2013.  It wasn't a routine procedure for me.  I nearly died in the surgery and was also told if I hadn't had it removed I would have died too.  My recovery was good, albeit a bit slow as I'd had larger incisions, and I'd lost blood.  All was well for a year or so.  The last year has been horrendous.  It started with what I thought was originally stomach flu.  Basically my stomach and abdomden swelled and I was in pain.  I went between diarrhea (which had never been an issue for me) vomiting, constipation, or all three in a day.  I was tired all the time and unable to function properly, and sometimes not at all.  All the while feeling immense pain where my gallbladder used to be.  From the beginning of March 2015 I've had so many scans, seen various Consultants and been on a cocktail of medication.  I too have gastritis.  They don't know the cause but I find lansoprazole helps with that.  I awaiting imminent surgery to have a look at and remove a post operative mass where my gallbladder used to be.  Despite numerous tests and scans, they do not know what it is.  Best guess is it could be part of the gallbladder that was left behind in the difficult surgery.  They do not know if removing the mass will help with the pain and the other symptoms.  But it is my only hope so I have to try.  Once that is done and I have a diagnosis, after it is all settled down, we can see what is what and take it from there in terms of what symptoms I have and what can be done going forward.  I'm literally living day by day.  It is horrible, simply horrible.  But stressing isn't going to help.  In fact stress just makes the pain worse.  As I say I'm on a cocktail of medication - pain relief, anti nausea, constipation relief the works.  I cannot continue this existance anymore.  It is soul destroying.
    • Leni75
      Leni75 LittleMissDolly

      Posted

      Hi I feel for all of us that are suffering from this terrible weird symptoms.

      one question: have you ever did an endoscopy to find out what cause your gastritis? It's a good way to know the cause and I'll be surprised if any doctor never sent you. 

      If it's bile causing your issues they would found out with an endoscopy. 

      Hope you feel better soon

    • sarah87162
      sarah87162 Leni75

      Posted

      Read my post from 5 days ago again.

      The reason I know I have a hiatus hernia is I had a gastroscopy which is similar to endoscopy.

      Sarah

    • LittleMissDolly
      LittleMissDolly Leni75

      Posted

      I've had 9 different scans and things over the last 9 months and one of those was a gastroscopy which Sarah talks about below.  That was the camera down the throat and into the stomach which confirmed the gastristis.  The particular Surgeon who did that said at the time that he didn't know what was causing this and whether it was related to the issues in my gallbladder region.  Once the post operative mass from the gallbladder site is removed and it's known what it is, time will tell as to what effect that will have and has had on the stomach and other subsequent issues.  Remaining undiagnosed at present is causing all sorts of issues as I'm now suffering swelling in most parts of my body and dizzyiness and extreme tiredness, all to various differning levels at certain times.  Plus because I'm undiagnosed I cannot undergo proper pain managment.  But my GP is brilliant and I'm on a cocktail of medication that works in the main! 
    • Leni75
      Leni75 LittleMissDolly

      Posted

      Hi I saw the gastro doctor today and he sent me for an endoscopy. I dont have one for over a year.

      Im so tired of this, today's app might as well  have been on skype or face time because they make us wait for so long for an app, then they talk 5 minutes with us, dont reassured us at all , didnt examined me or suggested anything when I asked about being bile or not. Its really a waste of time. He could have sent me to an endo on the phone with me!

      Its interesting your situation, i've never heard about a mass developed where gb was before. I'm sure thats not my case because i had a MRI and it showed all normal. I hope you can get rid of it and be well once for all.

    • Leni75
      Leni75 sarah87162

      Posted

      Ok. I know now its two different tests but similar.

       

    • LittleMissDolly
      LittleMissDolly Leni75

      Edited

      You are so right, it does get tiring being messed about and having unproductive hospital visits.  When we are struggling we build ourselves up to these appointments hoping that they will provide answers and they rarely do.  Back in October they lost me in a hospital.  Apparently it isn't as uncommon as it sounds being lost in a hospital!

      Whilst I would love to know what is the cause of the post operative mass, I would happily forgo that to be well.  I would give anything to be well and to lead a normal life. 

      Here's to us all being sorted and healthy!

    • eileen_35464
      eileen_35464 LittleMissDolly

      Posted

      Hi LittleMissDolly.

      I'm hoping this has been resolved since your post, but has anyone checked you for adverse reactions to the PPI ?

      I was on them for a few weeks and developed a heap of side effects. Swollen feet, hands, numbness, painful swallowing, tiredness, massive diarrhea, and headaches.

      I've had to go off them and am still waiting for the gastric endoscope.

      Hoping to get answers soon on alternative medicine that won't cause so many issues.

      Good luck and healthy wishes to all fellow sufferers.

  • Meezer953
    Meezer953 Leni75

    Posted

    So sorry to hear about your issue. I had gastruck bypass15 years ago. Last fall I started with the constant nausea and throwing up. Phenergan is my friend. Finally after numerous tests they found that I have a small gastric fistula and motility issues. And today I was told I have bile reflux. They are starting me on baclofan, a muscle relaxer that seems to work with bile reflux, not acid reflux. There is also an antidepresant that appears to help. If the baclofan doesn't work or needs some assistance, they will put my on a very low dose of liquid (has to be liquid) erythromycin which they say can help with the motility. I know your frustration. It's gotten to the point that I can't even walk into a grocery store without getting nauseous. Good luck with this because I know you're exhausted.

  • casey34288
    casey34288 Leni75

    Edited

    Leni do you still have the burning in your stomach?
    • Leni75
      Leni75 casey34288

      Edited

      Hi Casey, sorry about the delay in relpying to your message. I now suffer from chronic gastritis. My chest stopped hurting, I rarely get burning in my stomach now I have stomach pain and daily nausea I was diagnosed with gastritis. I was also h pylori positive in the  last endoscopie I I'be tried several times to treat it but I couldn't get rid of the bacteria in my stomach, but is it what is just causing my gastritis? I'm still not 100% sure. Life has been really hard last 2 and half years with health. I'm just 41 with a 2 1/2 years old child. God give me strength PLEASE!

    • casey34288
      casey34288 Leni75

      Posted

      I started taking dexilant and carafate and have had a lot of improvement from my constant nausea that I had for 6 weeks after my surgery and the burning in my chest! I saw a top gi dr in Dallas who said i did have bile reflux but she believes it will settle with time after the liver adjusts to no gallbladder and that can take up to a year. I believe you will get better I think it takes time for your stomach to heal with the meds and eating bland. This whole thing has caused me severe anxiety and I'm starting antidepressants and taking Ativan as needed. I too have 2 small children and it's so hard to take care of them when you are going through this but I don't believe it will last forever! If you have made it this far you are very brave! If it is bile reflux they do have surgery for that now so there is hope!

    • casey34288
      casey34288 Leni75

      Posted

      Do you still get the globular sensation and acid taste in mouth?
    • sarah52551
      sarah52551 casey34288

      Posted

      This is the newest forum I've seen for gallbladder issues. Everything else I've found has been from years ago.

      I had my gallbladder removed 12 years ago when I was 18. Since then I've had IBS and horrible reflux. In the past few years though, the reflux has gotten so much worse. I've tried every reflux medication and Dexliant is the only one that works, but my insurance decided last summer not to cover it anymore because it's not "generic". My doctor has been providing me with samples since September 2016 but obviously I can't live off of those forever.

      I've had 2 upper endos and had the beta testing which all confirmed reflux. When I don't take the Dexilant I have debilitating nausea. It's unreal how bad it is. I just went to the doctor yesterday and had to suggest, could this be realted to my gallbladder. He said he didn't think so, but I never had ANY of these issues before it was removed. He's prescribed me Welchol so I'm going to try that for a few weeks and see if I can't ween myself off of the Dexilant. I don't know what I'll do if that doesn't work. I can't function on a daily basis with the nausea. I had to self pay for 5 Dexilant pills last week and with Rite Aid's "discount" it was a total of $50.

    • irene08067
      irene08067 sarah52551

      Posted

      hello Sarah, 

      same situation for me here... Did Welchol work for you? thanks

    • kira85169
      kira85169 casey34288

      Posted

      Hi! You probably aren't on this site anymore--hopefully because you are doing better. I am 2 months from gallbladder removal. I have nausea in the am and the burning chest/heartburn you described that lasts all day. I am on dexilant and carafate too. I'm also on welchol. They help a little but i never really get relief. I'm just wondering if your symptoms eventually went away? Did you try anything else that helped? Any advice would be so appreciated. I'm really struggling. thank you!!

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