8 months since nightmare began
Posted , 3 users are following.
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
0 likes, 19 replies
susan22821 Acejohnston
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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.
Acejohnston susan22821
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renee15737 susan22821
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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
Acejohnston susan22821
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susan22821 renee15737
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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.
susan22821 Acejohnston
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Acejohnston susan22821
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renee15737 Acejohnston
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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
Acejohnston renee15737
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susan22821 Acejohnston
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Acejohnston susan22821
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Acejohnston susan22821
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renee15737 susan22821
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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!
Acejohnston renee15737
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renee15737 Acejohnston
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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
Acejohnston renee15737
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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