Hospital, yay!

Just 2 keep every1 updated. Having issues with my bowel at the minute. Have been unable 2 go toilet 4 5 days now & everything I eat is being thrown up straight away. Savage pains in my gut. Unfortunately, I have had this b4 due 2 blood clots wrapped around my bowel, resulting in me having 2 have the whole of my colon & part of my ileum removed so I recognise the symptoms. Spent Thursday nite in A&E, only 2 be sent home & asked 2 return Friday morning 2 c the surgeon.

Friday, spent the whole of the day in hospital having scans, x-rays, bloods & ultrasounds, 2 b told that although my bloods r showing slight problems with my kidneys (which is not unusual with me) everything else is clear & they can't find a reason. Tried 2 explain that since the removal of my bowel 18 years ago, I go toilet 4 times a day, 15 minutes after I have eaten as I have such little bowel left it doesn't take long 4 me 2 digest anything. But still, they have sent me on my merry way.

Friday nite I ate an omelette, yesterday I had a slice of Cheese on toast & today I have had an orange. All this food has remained inside me, despite me WANTING 2 go toilet, my stomach doesn't seem 2 b strong enough 2 push anything out, even with my drinking copious amounts of lactulose! (when I DO eventually manage 2 go, it'll b like a bloody tidal wave lol). Keep trying 2 vomit up the orange & the funny thing is my weight is going up despite me not eating anything so 2 me, that indicates definite problems. Have decided 2 visit my GP 2morrow and I know he'll send me straight in 2 hospital (saves faffing about up A&E) and I am going 2 demand they do a lap, just 2 make sure & put my mind at ease. Bloody surgeons, wish they'd listen & push 4 answers instead of dithering & faffing when some1 turns up with lupus & saying 'It's all 2 do with u're illness'. Duh! I've had this illness long enough 2 know when something isn't right & something is most definitely wrong so Mr. Surgeon, get u're arse in gear & sort it. That is all :0)

57 Replies

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  • Sher, that what happen to me every time I have that crushing chest pain,they do tests then just chalk it up to lupus when in my head I know something besides lupus is going on.iknow you are weak and in discomft please keep buggin stalking pestering untill you get an answer your always strong for us chick, sending you all our strenth and hugs sher x

    Luppychick x

  • The annoying thing is otherwise I feel great lol! It's just so frustrating that u can just c it in their faces that they think we're making things up. Don't u worry luppychick, I am in severe arse kick mode ;0) x

  • hi sher

    good for you sher, you tell that surgeon and don t leave without an answer. its bloody stressful enough when you go to hospital,docs and have to explain again and again that you know something is definatly wrong you know your body and you know when its not working.

    i would like to say i think you are amazing, you are always on this site offering good advice and a gentle ear with a lovely personality you are a positive person and give me so much hope that there is a life after lupus as i can often feel down and worried about my future .I would miss you if you left this site so hang in there and i wish you all the luck.

  • Thanks pinky56, that's so nice 2 hear and don't worry, I aint going anywhere chick ;0)

  • hey sorry to hear this, but agree 100% about the hospital and drs etc, it is either '' A VIRUS'' or simply ''well, you do have lupus ............''

    will look forward to hearing some good news fromm you tomorrow and until then, along with all the others, lots of love, spoons, support and kind wishes to you


  • Thanks Mandie. Have had a milky coffee too & boy, I don't half regret that, feels like some1 is now squeezing my gut lol! There will b ructions 2morrow at that bloody hospital ;0) x

  • Awww no hun!! Sorry to hear your poorly :-( you keep kicking ass and get some answers!! I will be thinking about you and sending you hugs and best wishes that you get this sorted, and sharpish!! Please keep us updated if and when you can, I know I will be watching for your posts, as no doubt will many others on here. Love and hugs xxxx

  • Cheers megs, will do ;0) x

  • Oh, that doesn't sound good to me. Poor you, being prodded here and there for this test or the other is no fun. Why are you trying to get the orange out, shouldn't you leave it and see what happens or are you afraid of blockages? What do you think it is, another blood clot? That is so worrying, I hope you'll get to a proper answer, I'll keep fingers crossed for you, I don't know how else to help.

  • Thanks. Trying 2 keep things down Purpletop, just CAN'T :0(

  • Not a case of me not WANTING 2 keep the food down (as much as it pains me 2 think of it rotting in there & just building up), it's a case of not being ABLE 2. My body is basically trying 2 retaliate by making me urge & vomit when I try & eat or drink something as it can't pass thru me as it should so it's basically trying 2 keep my gut clear by the only way it knows how, making me throw it back up. To me, going by previous experience, it's a clot or maybe even adhesions clamping the bowel 2gether, but then again, what would I know, as the medics love 2 keep telling me, I aint a Doctor. No, I'm NOT but when it comes 2 MY health & body, I AM a bloody expert as I have proved 2 the docs time & time again when they can't find anything only 2 suddenly find something that leaves me at death's door.

    It's so frustrating as I know if my original Rheumy & surgeon were still there (both have now retired) I'd've been straight down 2 theatre having a lap. It's all in my notes & if they bothered 2 read them properly, they would c that when lupus goes 4 me, it goes with a bloody great vengeance. I hope 2 God I'm wrong this time, but I have an awful feeling I can't shake :0/

  • as daft as this maybe sounds, and please dont take couldnt be this bloody nora virus could it?

    I havnt had it luckily, this time around but both my kids have and they said to ask youas that is exactly how they felt......although knowing you as i do then i would imagine that you are way ahead of them lol

    just thought I would ask xx

  • Nah, have had Noro more times than I can count (used 2 work in a hospital) & if it was noro I'd have no trouble whatsoever going 2 the loo. it POURS out of me whenever I have that or gastro (sorry 2 b so blunt lol!). But I do appreciate u're suggestion ;0) x

  • Plus there's the thing that my bloods showed no underlying infection or virus. The only way I can explain it is if u have a bag & squeeze it in the middle then try & pour something in2 the top. U can only fill it so much until it overflows & spills back out as it has nowhere 2 go.

  • That all sounds awfull, sending you best wishes and hope you get sorted soon. Take care xx

  • Thanks honey x

  • Hi Sher, that sounds awful:( You said to me last week to trust my instincts and that was sound advice. You know there is something wrong so you are right to check this out with your GP. You have been through the mill I think so sending you a big hug and best of luck for tomorrow at the GP's too xxx

  • Thanks honey x

  • sending big hugs and a spare spoon xx

  • Thanks my lovely x

  • You know I'm here Sher.

    Sending hugs. Xx

  • Cheers Jane my lovely, I know u r ;0) x

  • Try just liquids if you can ?get some build up shakes ,yuk but will give you all your nutrients and as its a liquid at least your body will absorb what it needs quickly,your body will be crying for energy ,i can eat for england always have its my energy device and havent excreted properly for 12 months ,i get awfull tummy probs ,doc says irritable bowl!I think its more than that?Can you take probiotics?soothe your tummy?or do they cause an immune response ?good luck with all ,brave;)

  • 4 the first time in years I am having sugar in my coffee & drinking 'normal' Coke (as opposed 2 pepsi max lol!). Never been a huge eater as I was unable 2 eat 4 6 months when I was first diagnosed so my stomach shrank, plus the fact that I have no colon & only very little ileum. Funnily enough, I feel full of beans apart from the ache when I try & eat or drink something, although 4 the first time 2day, drinking seems 2 b ok. Can't handle the build ups as was force fed them years ago so now if I even smell them they make me urge but I have blended up some fruits in a milkshake 2day & apart from making me feel a little queasy & uncomfortable, it's stayed down. Got some pro-bi yoghurts so will give that a go 2nite. Thanks brave ;0)

  • THinking of you , wish you all the luck, you deserve it ((HUGS)) x

  • Thanks honey x

  • Hope things improve for you. I do admire the way you are always so upbeat and encouraging even though you are suffering yourself. Take care x

  • Thanks Jax x

  • Oh Sher, poor you, hope things are resolved soon for you, x

  • Thanks Slowmo, I'm sure they will be x

  • Hi Sher sorry to hear you are having a horrid time of it, when are doctors going to relise we know our bodies better than they do so we can tell when we have a problem and need them to listen. We live with this every day. Hope you get the help you need, if I can do anything let me know . Good Luck mate

  • Thanks Shanti. I am quite lucky, I do tend 2 get decent GP's but then they don't hang around 4 very long & bugger off 2 another surgery lol!

  • Hiya gang! Busy day! Have had all blood redone, & blood gases which r 'satisfactory' (LOVE that word!). Saw a new Doc 2day who was absolutely disgusted that I wasn't examined & tested properly at the hospital. He has given me some meds 2 try & eat & keep food down, but also lactulose & has told me if I feel uncomfortable 2 use that 2 try & 'empty' anything. This is NOT treatment, merely just 2 help me while I wait 4 my emergency Colonoscopy, colonography & Duplex ultrasound. He has examined me internally & can't feel anything so any problems r further up in my ileum.

    No point admitting me 2 hospital as I would b classed as 'low priority' & they probably wouldn't offer the investigations as a first 'port of call' whereas this way, as they have been recommended by the GP, I will get the investigations he has requested. He has told me if I have any concerns, I am 2 ring or go c him & he has left a note at reception that I am 2 b seen by him as a priority. He also said if I feel I'm getting worse then 2 get up 2 A&E but I was 2 trust my instincts. I like him, kinda sounds like me talking lol!

    Basically, some1 has listened, taken notice & is getting the ball rolling, while making me feel a lot more at ease & totally understands my concerns.

    As 4 the lap, he has said that as I have been cut on my stomach so many times, it would b like opening a can of worms & they would b very reluctant 2 do it unless absolutely necessary so no lap until the other investigation r done first ;0) x

  • Sounds like your moving foward sher?great stuff! Whats blood gasses please?

  • Arterial blood gases (ABG) r taken from an artery & used 2 check 4 Co2, oxygen, acidity & alkalinity in the blood. Depending on the levels, it can indicate a number of problems such as liver, kidney, respiratory, bleeding, multiorgan, circulatory, renal problems & the results come back very quick

  • yeay .. he sounds like a nice doc .... :) .... glad ur feeling a bit better today .... big huggles xx

  • He is. I have managed 2 eat a proper meal 2nite. I can feel it rising in my throat but I'm keeping my gob firmly shut ;0) x

  • I like the sound of this guy, he gave you a proper assessment, took your instincts and knowledge of your body into account and he withstood your push for a laparoscopy by explaining the reason behind not recommending one. What specialist is he? Gastro?

    When will you get the procedures done, this week?

  • Sometime within the next 2 weeks, depends how far down in the pecking order I am I guess.

    He's just a junior GP, that's all lol! Just goes 2 show, no matter how qualified & knowledgeable they r if they have a good bedside manner, it can make the world of difference ;0)

    The main thing is, he LISTENED & totally understood my concerns, actually READ my notes & used his brain!

  • Hi Sher, so pleased for you that you got such good treatment. You are so right about listening and explaining actually can make a world of difference. You are going through a really hard time.......really hoping that things get sorted out for you as quickly as they can xxx

  • He is still at the stage where he loves his work, he hasn't been worn out by years of trying to sort out illness after illness. It's funny because although I was having many symptoms before diagnosis, my GP wasn't convinced that I need to see a rheumatologist. He only did so when I ended up in A&E one day with chest pain and a junior doctor diagnosed pericarditis, which together with the other symptoms made a stronger case for lupus. I'm so grateful to that kid, I can't tell you!

    I'm glad you're getting sorted, a bit of a scare, huh?

  • lol so true Purpletop, give him a few years ;0) I think sometimes Junior Docs r better as everything is fresher 2 them & they look at things thru a 'new eye' so 2 speak, plus, they want 2 impress so try that little bit harder.

  • Thats sods law. All the best

  • Thanks shanti ;0)

  • glad your feeling better sher x

  • Thank u x

  • So glad you found a gp that has actually listened to you! Hooray! Glad you are managing to keep food down abit now and hopefully the investigations will happen asap and you will be sorted xxxxx

  • Cheers honey. Wonder how long THIS GP will last though. Like I said, I always seem 2 get decent 1's, only 4 them 2 bugger off somewhere else lol x

  • glad someone listened to you poppet! hope you feelin brighter soon.take care x

  • thanks caninecrazy x

  • Meeting with the GP 2day 2 discuss a plan of action. He phoned me yesterday 2 c how I was doing & told me he had requested my notes from the hospital & after going through them with me, has asked 4 me 2 visit him 2day (now THIS is how a Doctor SHOULD be!). DEFINITELY not a blood clot as 4 some odd reason my INR has gone mentally high 4 no obvious reason. Colonoscopy cannot b done as considering I have no colon, they wouldn't b able 2 get far enough in2 my ileum 2 check 4 anything.

  • Just been back 2 the doc and he thinks there was either a blockage, the beginnings of a clot but my body has actually reacted properly 4 once and fought it or that I had a twist in my gut and the way it was twisted caused it 2 press against scar tissue. Still a little sore but think that's more due 2 pulling my stomach muscles from vomiting etc Bloody typical! They're still gonna scan me just 2 b on the safe side x

  • That definitely shows flare is waning, if your immune system is acting as it should. Good news, I'd say.

  • Oh yes, I am so bloody relieved, especially considering there's hardly anything left 4 them 2 take away from my insides now lol ;0)

  • hi sher78 ime a new lupus sle on here i have almost same problem as you have tried certains lax med but dont really help my dr says its down to my lupus meds i hope you get yours sorted take care

  • This was the whole point spain, I don't ever suffer with constipation as I have no colon so this is where all the confusion at the hospital came from. When I eat, the food takes about 20 minutes tops 2 go thru my system usually so as u can imagine, it was a bit of a concern 4 me, coupled with the pain but all is back 2 normal now :0)

    And welcome 2 the site ;0)

  • I'm all sorted now thanks spain. I no longer take any meds 4 my lupus, I find it much easier 2 pain manage instead as every med I've ever taken 4 my lupus, MCT, Raynauds etc has always caused me really bad side effects 4 very little relief so I decided long ago that 4 me personally, the added side effects they caused far outweighed the benefits of shovelling all these pills down my throat. Each 2 their own ;0)

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