gallstones - bad symptoms - in limbo

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First time ever posted here. Have had CT and ultrasound scans, blood tests, gastroscopy etc, all they have found is gallstones and I'm now on non-urgent list to return April to consultant. But the investigations were started as I was and am feeling terrible, severely bloated, left/ central/ occ right abdo/ back pain, intermittant low grade fevers, headache, vertigo, nausea, unable to sleep for more than an hour or so or eat other than liquidy things, feel worst I ever have, but as nothing is showing in tests I have been passed from pillar to post and no-one offers anything. Been to A & E, had paramedics out due low blood sugar  symptoms, GP numerous times, but each refers me back to the other and the consultant said if I get an attack to go to A &E. I am fed up with this merry go round and cannot function much longer like this after all these weeks, cannot work and Christmas was awful. The scan results have taken nearly 5 weeks to get back (holidays, Dr strike etc blamed!), although n/a picked up. Have another GP appt coming up. Anyone else been through such an ordeal

and how on earth did you cope?

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  • Posted

    Hi Cynthia  I am in the exact same place as you are, before Christmas diagnosed with porcelain gallbladder and on the waiting list for surgery good thing is I have been given a date 21 st march, bad thing I don't know if I can wait that long can only tolerate liquids have lost 15 kilos and am in constant pain and discomfort and really fed up and I know my family are fed up with me also constant complaining and not being able to function as a normal person, it's a disgrace that we have to wait for treatment if they know we have a problem the it should be treated immediately, as us not having to wait until it becomes unbearable hope we both get sorted soon so we can get on with our lives Linda x
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  • Posted

    Hi.I was waiting on appointment for scan via referral from gp to check for gallbladder problems when I took a severe gallbladder attack on 7th December,the pain was on righthand side under ribcage..the skin was even sore to touch...since August I had been watching what I ate coz nearly everything was setting off pain,so on the night of the 7th I went to out of hours gp and due to the fact the skin was so sore he admitted me to hospital that evening with suspected acute cholycistitis (inflammation of gallbladder),was given morphine and next morning taken down for a scan,hour later surgeon came to see me and said I was being taken to surgery to have gallbladder removed...there comes a point when you can't cope with the pain...for me it was when the skin became sore and pain on right handside became worse when breathing out..apparently that is a sign that things need to be dealt with...as I said to someone else recently on here don't put up with the pain,go to hospital and say you can't cope the next time you get a pain attack..if they admit you to hospital there is a good chance they will deal with the problem for good as they know you will just keep coming back...it's been 6 weeks since my operation and I can't tell you how good it feels to eat normal food again! Don't suffer as it really drags you down physically and mentally...good luck
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  • Posted

    yes waited two months after spitting up to get a CT and then they found the gall stone grew. Spo then waited for the suguery date to be listed and confiremed by insurance and payment rendered. then the surguery . Now I am still healing with insisiions and scars, two months after surgury. I am now runningg to the bathroom more often, have gas but no more bloateing and i eat what ever i think I can until it tells me otherwise. 

    good luck

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  • Posted

    Oh yes been there done that.

    I was diagnosed with gallstones Christmas 2014.

    Passed from pillar to post before having my gallbladder out at end of April last year.

    If you are planning to have your gallbladder removed it may be worth tellingthem that you are prepared to go in at short notice if there is a cancellation (if you are prepared to do that) it might get you in earlier.

    In the meantime keep on a low fat or even no fat diet.

    Take care and keep in touch

    Sarah xxx

     

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  • Posted

    I sympathise with you I really do. The merry go round was precisely why I suffered for three years until it put me in hospital for nine days. Once you are over the acute episodes and tests they don't really want to know. I am one step ahead of you though as I've been listed for surgery. Already been waiting 3 months and I'm told to expect another three month wait. It's not fun. I begged my gp yesterday to help as it's really like being stuck in limbo every day. He can only do my bloods and if they are still abnormal AND rising again he will poke the hospital but no promises. I've got to wait a week now just for a blood test. I know it doesn't help much but a few of us are in a similar situation here. I know you say "only gallstones" but the pain and symptoms can be severe. Try eating an extremely low fat diet. It really works to stop the gallbladder contracting and forcing out stones. I'm on less than 3% fat and it has helped with the bloating and some of the pain. Sorry it's not much help but I understand. Take care x
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  • Posted

    It's the most horrendous pain, I got took in by ambulance on the 18th Nov, was in for 10 days, had ultrasound, MRI, MRCP, and then let me home on a low fat diet, told me I need my gallbladder removed, we have private Heathcare so have gone through Bupa, as told could be waiting months for an consultation, had my pre-op yesterday and booked in for next Friday to have it done. The only mistake I made was not making myself a nuisance, keep going to A&E, then they should keep you in and do it, no one likes to be a nuisance but think it's the only bloody way when your in pain. Good luck and try and stay strong xx
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    • Posted

      Trouble is if you are in pain and had a bad attack they wont take out the gb whilst its inflamed so you have to wait for things to settle down which means going home and waiting and waiting on the list again not being able to eat properly or making any holiday plans its so frustrating ive been admitted twice now but they wouldent operate whilst in for reasons i mentioned earlier .good luck to everyone on this site at least we in it together .linda
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    • Posted

      Yes, indeed, life is on hold with this condition esp if you have the more chronic conditions. It brings you down as nothing in life is enjoyable and as you say, social and holidays are off, so nothing to look forward to. I am feeling ill 24/7 but as my tests keep coming back with no red flags, no-one seems to believe me! Our A &E is no longer open nights so you face going on a long journey to the nearest in another area if you are in pain and they don't have all your details and GBs seem to get worse at night! I do appreciate the support here though.
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  • Posted

    Hi Cynthia - I sympathize with you and am so very sorry you are going through this.  I had my first gallbladder attach early April, 2015 and had no clue what it was.  Actually had an appt with my GYN 3 days later and told her about the episode.  She scheduled for me to have an ultrasound 3 days later.  She called me the next day and said you are full of gallstones.  She referred me to a surgeon and I had surgery 2 weeks later (end of April, 2015).  All I can encourage you to do is have your ultrasound send to a surgeon and go through them.  You shouldn't have to wait and continue to suffer.  All I can recommend is during the meantime, do as they instructed me and eat a very low fat diet (20 grams of fat or less a day).  Yes, that is very hard, but helps so much.  GOOD LUCK

     

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    • Posted

      Thanks for your kind support. Things seem to move very slowly here. Yes, have been on low fat for a time now and although it has staved off major pain attacks, even water causes indigestion now. I have found Complan a help as it has the nutrients we could miss otherwise. Take care x
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  • Posted

    Hi Cynthia, I had my gallbladder out two and a half years ago after over 20 years of attacks - my dr and I thought it was indigestion! It took 6 months from my initial appointment with my GP complaining about the pain until actually having the op. Please don't give up, I was admitted after seeing an OOH's GP but as my op was due two weeks later they wouldn't do it then. A lady next to me never had any previous issues and was admitted with an infected gallbladder and it was taken out there and then. So not 100% sure about it having to calm down before being operated on. But I would think different Drs and different hospitals have differing opinions. I would definitely agree about going to A&E each time you have an attack, then they might actually do something about it. Can't comment on the issues before hand as mine was quite a straight forward diagnosis. Good luck with everything.
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    • Posted

      Thanks, Hannah. It seems that gallbladders are very complicated if they go wrong and everyone has a different journey, with some faring a bit better than others.

      As I mentioned earlier, our A & E is only open daytime, so it is a long trek to another town if you are ill at night. Frustrating since we are 3 miles from our local but 30 from the next nearest! It is great to have support and share on here though. Take care x

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