I'm fed up!

Posted , 6 users are following.

Just a vent. Got multiple stones, thickened gallbladder, inflammed bile duct and still abnormal LFT'S. Yes, I'm on the list for gallbladder surgery and yes, I've said I'll take any cancellation.

I'm sitting here with a stitch again and haven't felt well for the past few days. Tired, flu like, chills, itching and intermittent stabbing pain on the right side. I'm trying to get out and walk and focus on the fact I will get surgery eventually. It's so hard. I've been waiting since mid October for surgery and still no date. I had a pre op in November. Tick tock tick tock. I went to my GP a week ago to see if I can be bumped up the list a bit. No, I can't. But he did send me for a blood test to see if my abnormal LFT's have risen at all and if they have, he will write to the consultant. No promises. I had to wait a week just to have the blood test. Had it today. Tick tock tick tock. Hospital said it will get to my GP in a few days. Tick tock. I'm so bored with waiting! I'm fed up with the diet. Fed up with listening for every gurgle in my tum. Fed up with worrying that any niggles could land me back in hospital. I just want it OVER! Rant over :-/

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  • Posted

    Hi ,Ive been waiting 5 years for surgery ! now I am too scared to have it done ...

    The Hospital  said firstly it was a Hernia, then polyps , then stones, then polyps and now stones again.I am sick every day.My stones are like wearing a really tight belt , they catch on my ribcage and ive had a few collapses on the bathroom floor due to the worst pain ever .I cant move my right side too much and feel extremely swollen .I also  get reflux, my stones are over  2cm and growing .

    I  was told i need to have an urgent referal , but I am too scared after 5 years of indecision and uncertainty .

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    • Posted

      Are you in the UK? Were you ever admitted to hospital? That's absolutely outrageous! I guess I'm fortunate that I had text book symptoms that showed the likely diagnosis by the positive sign on the stomach examination and then from the first blood test when I was admitted as an emergency. Next day I was taken for ultrasound that showed multiple stones and thickened gallbladder. A few days later, my blood results took a turn, my temperature spiked and i needed oxygen, so I went for an emergency MRI which showed inflammation of the bile duct on top. I suffered for three years with attacks before I was admitted to hospital as an emergency. It really is so very painful and it can get very serious. I don't see any excuse for any hospital faffing around for five years. Seriously, get that referal so you can get on the waiting list. I understand your fear but you could face such a long wait if you are in the UK. You may even be able to choose another hospital if you aren't happy with that one. And complain. People don't like making complaints but it's a very serious condition. I was also diagnosed with a hernia but the consultant said to me "that's the least of your problems". Enough said. In the meantime, eat a very low fat diet. It really helps. Take care
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    • Posted

      Hi yes im in kent , although it feels like a third world country.I was told it was a hernia in 2011 then polyps then stones then polyps then stones.

      I got discharged because I complained about the 3 hour wait in the clinic, I  had to leave without appointment , when i had to pick my disabled child up from school.I got a formal "sorry" from the then chief executive , then they discharged me, knowing full well the paiin i was in.

      My latest "urgent referral" cannot be  done until March and that only for yet another consultation. However  I am getting much worse ...

      Did anyone else get really bad headaches and pain low down on the body ?  I have the constant pain in my shoulderblades and my GP says  to me if it gets worse go to A and E ,the worst hospital in the country in special measures since 2013 . Formal complaint is in again  , they dont like to reply though.Im  Just seriously ill at the moment and extremely fed up as quality of life is substantially impacted by the lack of care.... 

      I am now considering legal action because  if you pay you can have the same surgeon as on  the NHS  and it can be done within a week..   

       

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    • Posted

      I don't say as I blame you. I don't think people like to complain about the wonderful NHS, I certainly don't but it's all I can do. People do need to make a stand or else nothing changes. This was a crisis long before Winter started. The NHS warned the government about cuts but they ignored them. It's not the NHS that should face the brunt of it though. Fining them doesn't help patients get seen quicker. This is what I mean about breaches of the RTT. Once it's breached there is no incentive to treat people who have already been kept waiting due to crisis like this one.
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    • Posted

      Hi the problem is that some areas are really good and some areas are shocking , the problem is people cannot wait 5 years plus for an operation.The hospital have a duty of care to all the patients , if you do not complain , other people who are less able to complain get left for even longer periods and NHS England  say to you  why havent you complained to the hospital.If you do not complain nothing gets done as you said.I dont agree with this culture but individuals need to live and work.If we cant do either because of the pain we have no quality of life which impacts every body within our family. The problem  is  due simply because of the lack of beds/funding and cuts ,but I still pay my taxes and still  I get discriminated  against  because my local hospital is underfunded.     
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  • Posted

    Well this makes me feel a bit sick but at the same time may offer some hope.

    As I was treated as an inpatient, I didn't get the benefit of choose and book.

    I've learned that a private hospital just over the road from the NHS hospital takes patients via choose and book now.

    Just had a conversation with them. If I was private, I could have my gallbladder out within 2-3 weeks. 😢

    However, NHS patients have to wait around 12 weeks from seeing the consultant.

    Now as I've already waited almost 16 weeks of 18 weeks right to treatment, I have made a complaint, then I can ask to be treated at this hospital instead. If they agree to refer me as urgent, there is a chance I could get it done with a minor breech or no beech of the constitution.

    I am annoyed because I didn't get the benefit of choose and book. If I had, I would have had it done by now. Sickening. However, there is some hope I may actually get this done sooner.

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    • Posted

      Yes but that could also be good news if it was still very high they might use that as reason not to operate  if its gone almost back to normal ha ho no reason not to . we will have to set up our own diy gb removal service for everyone on this forever waiting list sad
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    • Posted

      Yeah that's true. I did wonder if it was like a ducking stool. If I end up back in hospital, I'm going to be a nightmare. The temptation to stuff this diet is strong. How bad must things be to think this way? It's got me so down
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    • Posted

      Ive felt the same way but i know if im admitted again i will be jaundice and lft through the roof and be back to square one .when i do get in like you i will be a right pain in the a--e  .just made myself a big pan of homemade veg soup (for a change) longing for a proper meal  ive lost one and a half stone though since oct which i needed to lose so that is the only good thing to come out of this .how much have you lost ?
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    • Posted

      I've lost over 2 stone since October. That's not a bad thing but the diet is so restrictive. Some days, if I'm feeling OK, the temptation is very strong to eat a bit of cheese or an egg. Today was hard. I made up my usual batch of low fat Shepherds pie to take round my parents house and the rest of them all ate fish and chips. When I'm hormonal I crave like mad. Those fish and chips sure did smell so good. The day before yesterday I had bolognaise and everyone else had garlic bread and parmesan. Big no no. But I could smell every ingredient I swear. Hub has just had toast with butter and I could smell the butter to almost to tasting it. Most days it's OK, but others I really struggle. To not be able to even have a small amount is punishing. Even diets allow for some treats. Not this one.
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    • Posted

      Its torture.

                           my weakness is cheese could of killed  for a cheese and onion sandwich yesterday  but not even tried a tiny amount when i ve  been gratting it for others.people say to me they cant loose weight i tell them you would if you had to go on the gall bladder diet . you wont cheat when it means agonising pain if you do. We should bottle it and make a fortune . im hungry now talking about REAL food .

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    • Posted

      Hi Lisa,

      Last year when I got referred from my GP to a gastroenterologist I had choose and book but couldn't get an appointment anywhere as there weren't any.  So, the Secretarys at the GP's arrived it.  I went to see an NHS one but at a private hospital.  Can't say I was Impressed.  Yes, the hospital environment was nicer, but I wasn't treated as well there as I was at the NHS hospital I got through choose and book for another issue.

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    • Posted

      Yes, have to say I'm worried about just that. I've been reading some horror stories. I know exactly what you mean.

      With some of the problems I had at my hospital though, I won't be fussed if they don't treat me now. The hospital was at breaking point back in October as I was kept on a cancer ward for a week before I could get a bed in general surgery. I don't think they planned for the winter very well when day case theatres have had to plug the gap for A+E admissions for an entire month, cancelling loads of elective surgery. I was told by PALS that they have not yet decided how to manage the situation. It's a bit late now isn't it.

      What concerns me most is becoming a breach. It's a concern for us all actually. Once you have breached the 18 weeks, then you just become one in a statistic. Hospitals get judged on the number of breaches. Once you have breached you cannot breach again but other people down the list, can breach. This means it's not really in the hospitals interest to treat you quicker but it is in the interest to prevent other people from breaching. It's absolute rotten timing for us here. Becoming unwell from the outset of a winter that the NHS was under pressure before winter started.

      I am going to fight with all my might while I'm still within the 18 weeks. I'm even prepared to travel to get this sorted. I need to get fixed so I can recover and find work. I really need to get well asap.

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    • Posted

      Lisa,

      You've made some really interesting points there mate. Poor planning for a winter that in effect was very mild. Apart from the horrible rains and all the horrible effects of that on folk. It'll get worse going forward as there hasn't been any cold snaps to kill the bugs off.

      And I hadn't thought of the 18 week rule that way but you're right. I'm 7 weeks over the 18 weeks now. I've not mentioned it and neither have they. I might keep it that way for a bit

      But my one thing I would say to you is this, if the gallbladder is really badly infected and they want to wait until that's cleared up a bit don't dismiss it as you are so desperate to have it done. Although I'm undiagnosed and they don't know what the post operative mass is in the gallbladder area, the best guess is that it is a gallbladder remnant from difficult removal surgery where it had to be taken out there and then. Whatever it is its caused be no end of issues the past year that have proved to be worse and longer lasting than the pesky gallbladder was originally.

      On Tuesday when they phoned to cancel the second surgery because of the bed crisis, they said they would phone me by Friday at the latest with an action plan for me. I heard nothing. Spent yesterday afternoon trying to get hold of him. Nothings doing, excuses etc. Phoning me next Friday now. It's ridiculous. So once the shambles of the beds is resolved, then I have the hurdle of is the Consultant going to be around. It's pathetic. At the end of the call I think he regretted telling me to have a nice weekend! I'm ill mate, I don't have a life. Oh yeah sorry I go supermarket once a week if I'm lucky.

      I wish you well in your fight. Imagine if folk like us didn't have the drive and determination to fight our case. All we want is to be well. You have a lot of support here. Be kind to yourself to xx

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    • Posted

      Hi with regard to foods its odd isnt it , I can have a white buttered roll but cannot eat flat bread, i vomit. I can eat the most boring piece of chicken but i cannot eat any other meat at the moment .

      I can eat tuna and cheese but cannot eat a plain biscuit. Its very stressful because if i eat the wrong item i vomit , but the catch is that you dont know its the wrong item. I am always hungry which i dont understand either as i start every morning feeling sick , then hungry , then when I do eat I feel sick. I would really really like some chocolate , but I know that will make me very very sick... I have looked at you tube and I have ordered some apple cider vinegar its meant to help .. we shall see

      take care xxx 

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    • Posted

      Oh LMD I really feel for you. It must seem like a never ending nightmare. It's always worse when they say they will call back and never do. Always a Friday isn't it? To them it just gives them a couple of days breathing space. To people like us it feels like a never ending frustrating circle of misery. I could just cry most days but I'm afraid if I do I won't stop :-/

      It was very telling ringing the private hospital. They are contracted to carry out so much NHS. At first, they didn't know I was NHS. When I queried the waiting time of 12 weeks, they said, oh no, we'll have you operated on within 2-3 weeks. So I said, marvelous! Just to let you know that I am NHS. The tone changed straight away. Oh NHS, yes, err, well that will take longer. I need therefore to get the general hospital to request I'm seen urgently by them and transfer my care. Then they will get me done quickly. It's the same consultants. They are contracted to do part NHS part private. They spend half their time in the private hospital and the other half at the general one. This is why I'm not too concerned about the treatment. But it's going to be a battle. Hospitals do not like complaints. I don't blame them but I'm in this situation. If they agree to transfer my care, and I get my op sooner, I'll drop the complaint. I'll even allow them the two weeks they have strangely added on to my RTT time. Got to be worth a try. If I sit here mulling over an operation date sometime in June I'll probably do myself in :-(

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    • Posted

      Don't give up, Lisa, you seem to be "almost there". Only you know exactly what you are really going through, each person has a different story, but others on here can indeed understand and sympathise with the angst, frustration and the pain of it all. The stress of dealing with all this is not helping our condition. I am now on the NHS waiting list but in the meantime just existing as so unwell, cannot look for new job like this, feeling like a zombie and I reckon the poor nutrition and toxins/ imbalances in our blood are grinding us down further. Take care and good luck x
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    • Posted

      I have the same problem. I really need to work. If this carries on much longer, I'll just have to remove myself from the list and find work no matter how I'm feeling. I've got until April winging it or May at the latest but then it gets financially very serious for me. But that doesn't count as clinical need. Hey ho.
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