8 months since nightmare began

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Well it's 8 months today since I had my gallbladder removed. It's been the worst time in my whole life. If I could turn the clock back I would never have had the operation. I had 1 large stone causing me some pain and like everyone else took my surgeons advise to have my gallbladder removed. I read all the horror stories and convinced myself that wouldn't happen to me and spoke to so many who had the operation and who told me I'd be fine (a lot of them were economical with the truth about how it's affected them). The day I got the call to come in the next day for the operation I hesitated and told them I'd ring them back. My gut was telling me not to have it done but those around me said go for it and I thought of my surgeons words if you have an attack over Christmas you will be in right trouble. What was to be a simple operation turned into a 4 hour open operation due to adhesions from previous surgery. When I woke I felt sick and I've never felt right since. I vomited all the time in the hospital and then the lovely yellow diarrhea started. I was told it would settle down. When I got home the vomiting stopped but the diarrhea continued all the time at first and then just in the mornings. After 8 weeks the vomiting and horrendous nausea started again. This time I would wake in the middle of the night feeling sick. The hospital visits started then with test after test all ok. During a 3 week stay in hospital in March I was told I had a large cyst on my ovary (which was found when they found the gallstone in October). I asked could this be making me sick and no one answered me. I started psyllium husk and calcium to stop the diarrhea. I saw doctor after doctor until eventually a top gi doc admitted it was a side effect of the surgery. I was sent home with loads of drugs to stop me getting sick. None of which worked. Out of desperation I started acupuncture which helped somewhat. She recommended milk thistle to help my liver detox but also to balance my hormones and get rid of the cyst. During all this time my gp was a great support to me and kept telling me I would get better as she had seen this happen to others in the past. She told me it would take a year. About 4 weeks ago I got severe pain in my ovary which then turned into contraction type pain for days on end. The funny thing is the vomiting and nausea seemed to improve when this happened. I had a scan a week later which showed the cyst had partially ruptured and was a lot smaller. I realised then that the cyst was a big part of my problem. I still don't feel well but am better then I was a few months ago. Have had some nausea again the last few days and am hoping its to do with the cyst. I have made some good friends through this site and I want to thank those who have sent me so many messages of support over the last 8 months. I am horrified to see so many suffering too. I am frightened that I'll never be the same again and will never recover from this. For so many this operation is a life and death situation and is justified but for me and others I feel removing the gallbladder was completely unnecessary. I will always regret this operation and feel my life has been cruelly taken away from me. Unfortunately there is nothing that can be done now. As each day passes I become more fearful about my future. I have heard of so many who were unwell for over a year after the operation and then it settled down and I can only hope I am going to be one of those people. For those considering the operation try everything you can first to save your gallbladder unless it's a life or death situation because unfortunately no one can predict how our bodies will react. X

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    I am really sorry to hear about your ongoing problems after the GB surgery. As you have said, you do have concurrent issues with an ovarian cyst which may well have muddied the waters.

    To everyone I just want to say that the risks of not having GB removal when you have had stones confirmed is just as bad as the risks of surgery (any surgery).  I know personally one lady who couldn't get the NHS to agree to removal (just as I had to deal with fobbing off - eventually I went private) who ended up having emergency surgery with gangrene in her gut because a stone wedged and deprived a section of blood supply.  She survived, but untreated gall bladder infection, wedged stone etc can be ghastly and in the worst case fatal.  Again, I know of the father of my daughter's friend who was petrified of hospitals and refused to see a doctor or get any help.  He died on the living room floor in agony as a result of untreated gallbladder disease.

    I am NOT trying to scaremonger, but point out that the alternative can be far worse than after effects.  There are thousands of people who have successful ops and so won't be on a site such as this.  I was scared to death of being one of the 20% or so who have short term nasty after effects, or even one of the 10% of that 20% who have problems for,life afterwards.  The overall risk of this is quite low, as you can see.  Two people in every hundred. I am one of the ones who had a successful removal (only came on here when I had a bout of gallbladder like pain and wondered about the possible reasons).

    I don't want people who come on here pre an op seeking reassurance to think it is all doom and gloom.  All surgery has its risks, and I am desperately sorry for those who do suffer afterwards, but diarrhoea can be treated or alleviated.  But not having the op if recommended, then the attacks will almost certainly keep on happening and you may end up in emergency surgery or even pay the ultimate price!

    A ruined life is one where there is no life at all.  I have suffered debilitating agoraphobia since the age of 20 (now 67) and it did not ruin my life, it changed it.  It is all about outlook and keeping things in perspective.  I am sorry if this opinion isn't welcome but I feel a balanced view needed to be made.

     

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      Susan thank you for your comments and I am so glad that you were one of the lucky ones who've had no problems. As you say every surgery has its risks and not having the surgery also has its risks as you've pointed out. I agree we tend to come to these sites when we have problems but I can tell you that out of 6 people in my family who've had it done only 1 didn't have any side effects at all. The others can't eat certain things and drink red wine and one cousin has had diarrhea for 38 years since hers was removed when she was 21. Not being able to eat certain things and drink red wine are minor inconveniences in my opinion but living with vomiting nausea and diarrhea has been life changing for me. I'm not trying to scare anyone here but just want to let people know this is what happened to me. I'll never know what would have happened if mine wasn't removed but it's likely things would have gotten worse over time. I have spoken to so many people since my operation and so many had dreadful side effects some for 6 weeks some 6 months and some 1-2 years. In fact out of 20 people only 2 didn't have any side effects! What really needs to be found is a way to remove the stones without removing the gallbladder and also looking at the cause of gallbladder problems and addressing that. It's sad when we see 22 year olds posting on these sites with problems after this operation and also very worrying. Take care x
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      I guess that's why I put it off. My first ultrasound showed no stones but was contracted like I'd eaten but I'd fasted since the night before. The surgeon wanted to operate. I asked how sure he was it was my gallbladder he said 70%. That wasn't good enough for me. 6 months later repeat ultrasound after I had to call an ambulance with excruciating pain and still no stones! I really wanted a 99% certainty even though Dr's don't like to give that. My 3rd ultrasound 5 years later showed loads of stones and I'd researched myself to know what to look for during the scan so could see for myself. So I was more convinced this time but only that there was now a strong possibility the pain was from my gallbladder.

      Focus to this year I had an appointment for my gallbladder and another with a gastroenterologist and I told the gb surgeon I didn't think it was my gallbladder still because the pain would start in the middle just below my ribs and travel left! He said ok fine. The gastroenterologist ran lots of tests for my stomach and found nothing. Forward on 3 months the pains were daily lasting hours and I couldn't cope. I was getting worried if it was my gallbladder that it could rupture or something as painkillers weren't working now. so I called the hospital and asked if I could see the gb specialist again without going through my GP. He saw me within the week and said I could have the op. I had my pre op assessment there and then and waited for my appointment date.

      As I've not had the pain since I'm kicking myself I didn't do it earlier but maybe leaving it so long also benefitted me in some way

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    • Posted

      Susan have to add something here about perspective and outlook in Life. I was diagnosed with ulcerative colitis at 22 and had my bowel removed 5 months later as I nearly died. I had a bag for 2 years which gave me my life back. I was grateful to be alive and to feel well. I have always had a very positive outlook on life and always look for the good in things and people. However I didn't expect to have an operation to take my pain and suffering away only to end up a hell of a lot worse off and affect my daily life. It's easy for people to say have some perspective when it's not happening to them. As I said I'm glad you had a successful operation and your feeling well. I wish you continued good health. Take care x
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    • Posted

      I know that the site of the pain doesn't always seem logical, with respect to where the GB is sited.  My pain was always central chest behind and below the sternum and it radiated both sides around to my back, where it seemed to lodge behind my spine.  This is because it is referred pain.  That means the nerves affected are on the same pathways as the gallbladder.  Another reason that pancreatic cancer often shows itself first with back pain, or appendicitis usually starts with pain on the left hand side of the abdomen.

      After my first attack, my GP did say that I might never have another one, but I did, a month later, then I went 9 months before the next one (you can tell how each event is still etched into my brain!).  But after that they settled down to one every one to two months, each lasting longer than the one before.  First one was about 2 hours. Longest one over 12 hours. It was after the second attack that I had an u/s scan which confirmed, "several small stones".  I was never able to find out how many "several" was, nor the size of the stones.

      My attacks did not seem to be related to what I ate, and I was on a low fat diet anyway because of family history of heart disease.  I suspect just eating in and of itself sometimes caused a stone to move into the duct as the gallbladder did its usual thing of contracting to move the bile into the gut.

      This is a horrible condition,and until I came on here I did not know of anyone who had the worst after effects.  It always seemed to be a success story.  I wonder if Ace's family share something genetic that makes them more prone to the negative effects.  Seems likely with so many of the family having problems.

      I find I can no longer handle alcohol since the op, and I no longer have even a drizzle of cream on any desert, but I see that as a small price for relief from the pain.  I know I am one of the fortunate ones, believe me, first for having no bad reactions to the op and for getting to my mid 60s before my gb played up.

      I do wish you all well.

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    • Posted

      I am very sorry to hear about that.  It may explain why you are having bad gastric repercussions now. I do hope things do settle down for you sooner rather than later.  x
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    • Posted

      Thank you Susan. The funny thing is that when I saw the top gi doctor here in Ireland he told me it was very rare for someone with my history to get diarrhea after gallbladder removal. He said it was more common in those with their large bowel. I have spoken to people who had the same surgery as me and most were ok after the operation with very few after effects. Was your gallbladder inflamed too or just full of stones? Anyway all I can do is hope my body will adjust sooner rather than later. Xx
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    • Posted

      Diarrhoea was the one after affect I heard about that put me off!! I was doing a class in physiology and anatomy and the tutor said in Brazil they have gallbladders out like have teeth out and all suffer diarrhoea!! Dr's are always economical with the truth! Who would have anything done if they weren't!!

      What is your diet like Ace? I've been looking at this website against all grain by Danielle walker! She has UC too and changed her diet so that no longer has problems. I was looking at her site and reading her book. It may be a combination of everything that's the prob and not only the GB removal.

      I don't know the stats on people who do well or who don't. But why should anyone suffer with or without a GB. Good luck x

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      Renee diarrhea was the one thing I was worried about. My surgeon told me it was uncommon. The sad thing is my other family members who had it done weren't honest with me prior to the operation. One cousin has the diarrhea for 38 years and she looked at me straight in the face and told me she had no issues! I rang her a few months ago and then she told me the truth! Her daughter also had it removed last year and she hasn't diarrhea but can't drink wine and gets terrible wind! I stuck to a low fat non dairy no gluten diet for many years and only last year started eating gluten again. I eat very plain food and have always been careful with what I eat. I am hoping this cyst is a lot of my problems as I didn't have nausea and vomiting for 8 weeks after the operation. I have spoken to a number of people who have had ovarian cysts and a lot of them had nausea and the other symptoms I've been having. What's really upsetting me is that the cyst was found in October when they found the stone and I wasn't told until after my gallbladder was removed. I've since been told cysts can actually cause pain under the ribs!! I didn't feel well before the operation and definitely had some hormonal symptoms but put everything down to the pain from the stone. I have a good friend who had his gallbladder removed 30 years ago and he has had no issues. He had stones and developed pancreatitis. He keeps telling me I was right to have the operation. How are you feeling now? How is your appetite? It's great to not have that pain anymore. You've been suffering for a long time. I've no doubt you'll make a full recovery. Was your gallbladder inflamed too? X
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      The surgeon reported that my GB was inflamed, with thickened walls and several stones.  I asked for my stones but was told they weren't allowed to do that because of, wait for it, "health & safety"!  😏
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    • Posted

      Ha ha that's gas! They used to give them to you. I didn't get my 1 stone either. I didn't have thickened walls but my surgeon said that the gallbladder was inflamed. I'm not convinced of this as he told me after the operation my gallbladder was ok. It's only when I was in the hospital for the vomiting that he said it was inflamed. I'm wondering if that's why I've had such a bad reaction as my gallbladder was ok?? Most people have inflammation too although there are some who have stones and no inflammation. My cousin who had the 1 stone like me didn't have any inflammation and didn't have any side effects! Did you get any of the side effects in the first few weeks? A lot seen to get the diarrhea for a few weeks and then it goes. X
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    • Posted

      Yea I asked for mine too. Nope H&S! Pfff

      I'm ok. I think cream is a no no so far. I don't have diarrhoea but was badly constipated before so now i'm just going normally. I think the only downside is I get a bit tummy ache before I want to go.

      I'm really surprised there is no follow up appointment though. You're just left too it. They should at least check your incision points!

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    • Posted

      It's early days Renee. That tummy ache is normal. It's just your body adjusting. Delighted you haven't the diarrhea. That's a good sign. X
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  • Posted

    Sorry you're having such an awful time with your health. Will they remove the rest of the cyst? Did you not push them as to whether it was that causing your sickness?

    I'm 13 days post op and I agree with you about doing everything possible to save your gallbladder before having surgery. It took me 8 years since diagnoses to have my surgery. They weren't sure enough for me, I wasn't sure convinced it was because my symptoms didn't match any that I read. I had a young child and didn't want to have an unnecessary operation that would prevent me caring for her. When I couldn't take the pain anymore and decided to have the op I still had to postpone for another 3 years. These past few months I've been in tears it had gotten so bad and constant nausea/sickness which I didn't even know was a symptom!! I couldn't look after my kids properly anymore as I was always writhering around in pain. My quality of life was failing and I was scared to eat. I actually begged to have it done in the end and they found over 70 oxo sized stones!!!

    I'm taking it a day at a time and praying/hoping for the best. Already that awful pain has gone so that is a plus for me!

    I hope things improve for you soon

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    • Posted

      Renee am so glad your feeling better. The problem for me was I only had the pain for 6 weeks And my surgeon said it was best to take it out as it would only get worse. I'm so sorry you've suffered so long. I saw a gynaecologist in hospital and he was going to remove the cyst But he spoke to my surgeon and as I've had previous bowel surgery they felt it would be too risky. The cyst was 3 inches and is now an inch. I asked the gynaecologist if the cyst could be making me sick and he didn't answer me. My surgeon at one stage thought I had a brain tumour! When I saw the gi consultant he said it was a side effect of the operation and was very surprised I got diarrhea!! He told me it would settle down but that was in March! Although a nurse in the hospital did say to me it could be the cyst. I cry everyday for my old life and to feel well again. It's hard living like this. Nausea is a dreadful thing and nothing gets rid of it. I didn't have it for a few weeks and thought it might be because the cyst partially ruptured but have it again that last few days. It's very hard with a 4 year old to care for too. You know I've had many things happen to me in my

      Life but this is by far the worst. At least if you have a disease you have a diagnosis and there is treatment but with this there's no knowing what will happen. I do know a woman who also had hers removed due to loads of stones and she had vomiting and diarrhea pouring out of her for 8 months and it was only then she started to get better. It took another 4 months until it fully stopped and she's ok now. I can only hope that this will be the same for me. I wish you well in your recovery. Watch the fats for the first 6-12 weeks and take things easy. Give your body a chance to adjust. Take care and keep me posted xx

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