Sunday, 16 December 2012

The Twilight Times

Oh bloggy-wog, I am in a fix.

As most of you probably know, I am no longer at That Hospital. We must say no more on the matter for now, but it means I’ve had a terrible, painful and horrifying year.

For all its faults, I stayed at That Hospital for 18 years. Incredibly, The Great Twitter Incident wasn’t an isolated example of the patient “care” I had accepted as normal for all of that time. The stroke they insisted was just an attention-seeking panic attack; the operation I woke up from with no pain relief, writhing through 6 hours of torture until the pain made me lose consciousness; the bullying little nurse clique who sent me home haemorrhaging with a urine infection after they withdrew care a few days before they discharged me.

Why on earth would a human being accept that? What could possibly be worth all that desperation, humiliation and fear?

I am an odd medical phenomenon. I just don’t present in any way as a patient who’s bowel is blocked. I don’t get much inflammation or active disease, so my blood test results always come back fine. I don’t blow up like a balloon, so my physical examinations are always fine. To complete the set, my scan results rarely show much structural damage, so my bowel usually appears to be fine.

This meant that I spent my childhood being told that I was “just” anorexic, or “just” depressed and a six year wait for the diagnosis that would entitle me to any treatment.

Even at That Hospital, it probably took my consultant 5 years to truly believe the evidence in front of his eyes. Without fail, every time I got very sick indeed, the tests would not really justify surgery and every time, they ended up rushing me in as an emergency and finding impossible tangles of pus and ulceration and tumour-like blockages.

In the end, he just knew that we only really had my symptoms to go on and we settled into a fairly regular arrangement. I would take all the steps you must take to get the crohn’s under control myself – put my steroids up to settle any inflammation, modify my diet to the optimum healing regime, supplement my diet with liquid feeds for nutrition if necessary, administer painkilling injections for a few days to get over nasty little flares. I knew all the rules.

If all of those things failed and the pain just kept increasing, like an insistent child demanding immediate attention, it was getting serious. Super-Doc always stressed that there are a few lines in the sand you just do not cross. He trusted me to act sensibly and do the right things.

-If you bloat up suddenly, your abdomen becoming hard and rigid, it’s straight to A&E

-If the pain becomes constant, reliant on the strongest drugs to give any relief, things are bad.

-If I start vomiting continually, sweating and puking and heaving, hour after hour, you call an ambulance after 48 interminable hours.

-If a hard, distorted abdomen hurts more when you let go than when you press, it’s straight to A&E

-If I start to lose weight despite all of my efforts, I need treatment quickly, before I get so malnourished and underweight, surgery would become impossible.

There are funny little “stricture hiccups” you get when your bowel is blocked – more of a gasp-squeak than a burp and a stricture “talks to you” in a constant, rumbling rrow-rrow-rrow grumble.

So with all of those things in mind, it is far from impossible to diagnose atypical obstruction if you know what to look for.

But I have to start all over. Like a hospital virgin, I must wait coyly for invasion. No reason to need emergency treatment, no apparent cause for the unbearable pain, no belief in the possibility I could be endlessly vomiting. I have not yet passed the probation period, and as such, am guilty until proven innocent.

No-one at my new top-secret, undercover location has read my previous notes. (I know, but it’s true. I even had them couriered here at my own expense, but they sat unopened in a box for three weeks.) They haven’t spoken to my old consultant. They haven’t done any scans since August – convinced as they are that the first can only be good enough. They insist on treating me medically, repeating all the steps I have taken myself at home. They speak to me as though I only heard what crohn’s was yesterday, though I almost certainly know more about the disease than they do.

I have all of the signs I list above. At least once a week, they all come on at once and I writhe and vomit my way through 2 or 3 more intolerable days, delirious and frightened. I keep bouncing back to hospital, aware that these are symptoms that Must Not Be Ignored and each time, they intone the zombie like assertion that things-must-be-ok-because-the-book-says-they-are. Baffled and confused, I go home, bear it as long as I can, and then the whole cycle starts again.

We have reached an impasse. I believe that I am dangerously ill and like a drowning man, cling to my symptom-life-rafts. They believe surgery can wait and are convinced they won’t find much to do that will give me any comfort or relief anyway. I can’t phone my old consultant and they refuse to phone him themselves – why, after all, would world-experts in bowel disease need to trouble another world expert with something as simple as a diagnosis of obstruction? Oh the professional shame of it!!

So, I’ve tried everything, done everything I can to make my case. I can do no more. I must simply go home – over the Xmas holidays when emergency teams are thin on the ground if something goes wrong - and hope I survive until this mirage operation might become a reality. I must hope even more that this isn’t the time I’m wrong or I will never have any credibility with this new team again. The pressure is entirely on me to know when to insist, when to contradict.

My Mum and my husband, already on the brink of despair, must watch me writhe and oh-so-nearly-fade-away through each violent bout, powerless to do a thing about it. My kids must settle for Victorian style daily visits to my bedroom as they wait for Santa and decorate the tree. They watch their Mum, stagger from her bed, bathed in sweat, her bird-like legs carrying her agonisingly slowly to the bathroom, her lips blue and her hair wild. My room smells of disease; gloomy and un-natural with curtains closed.

I have no idea how a human could be expected to “just tolerate” this. But I am and I must.

Somehow, I must try to lose no more precious kilos, though days pass where even water refuses stubbornly to make it anywhere near my kidneys.

I imagine the surreal image of me, with my wonky paper hat and tinsel streamers, shoving needles in my arse under the dinner table, as Dave carves the turkey.

So just for you, George Osborne, a glimpse of what really goes on behind at least one set of closed curtains


  1. That's horrendous Sue. Makes me feel so grateful to the GP who instantly recognised my Ulcerative Colitis many years ago now. I can safely say I have never been more grateful for the finger she promptly stuck up my bum, withdrew and sniffed! I was treated by world class physicians for 7 years and then had to have surgery because of the risk of colon cancer. This procedure was carried out by world class surgeons as well. I still have the other "add ons" that go with UC, like Arthritis in just about every joint but no more pain in the arse, thank goodness. The only pain remaining is the coalition government and their unremitting war against the poor the sick and the disabled. I hope your condition improves and that nothing else goes wrong for you and that the doctors listen to you.

  2. Bloody hell Sue you've just moved me to tears of frustration, sympathy and fury. The new hospital team should read this.
    And get your lazy scrounging arse out of bed and get to work, gideon has to look after the hard working tax payers money. ;)
    My Xmas wishes to you and your long suffering family.



  3. It's diabolical treatment and likely to only get worse as the English Health Service degrades further (there is now no NHS in England).

    Have you _written_ something like this to your new consultant? Laying out the decades of experience you have, the abnormal test results that are normal for you etc? And pointing out that a refusal to take you seriously, to read your notes, or to contact your previous consultant will be placing them at risk of a malpractice suit when things go wrong. Which would be no use to you by then, of course.

    I've found that it doesn't matter how many times I tell a doctor something, they just don't hear it (especially older, male doctors... it's like they have some sort of disease that makes them deaf around female patients) so I have to write it all out and hand it to them to read at the start of the consultation - and then it gets added to my notes, of course.

    Good luck and *gentle-hugs* from a fellow spoonie.

    1. I know it seems extraordinary, but I have - repeatedly. I even pulled out a few examples from my notes of exactly this happening in the past so they could see for themselves. Surgeon scanned first paragraph, then left the notes unread by my bed.

  4. I wonder if somebody (Sonia perhaps) could get your medical story into the public eye whether another Consultant would take on your case? Or if you were to contact all the Digestive Disorders/Colo-rectal Consultants you can come up with one of them might listen and be sympathetic? There must be a consultant somewhere that would take proper care of you - I have seen so many myself and they vary SO much... Or could you find one privately and start a campaign to raise money to pay for private care?? Perhaps we could get an Insurance Company to take you on - it would make great publicity for someone since you already have a public profile? Is there a Crohn's organisation that might support a campaign?
    The work you did in raising the public profile of benefits was amazing - can you and some of your friends not do the same for you as a person? In the name of everyone with Crohn's and similar conditions somehow we have to change the way Consultants relate to people. They HAVE to learn to listen to patients...
    I am so so so sorry this is happening to you - it's hard to believe it can be this bad but I have had a little taste and know exactly what can happen...

    Much love to you Sue xxxx

  5. I can see how desperately you want to help, but no I'm afraid none of those things would.

    I am fairly good at getting things into the public eye myself now, if I want to, but the last thing I need is to alienate another medical/surgical team. Public attention is the very very last thing I need.

    In these blogs when I say "I've tried everything" I really do mean I've tried everything.

    But in the end, you have to set a line. I will make myself sicker if I carry on fighting battles I can't win. I must build a relationship with these doctors until the point it doesn't happen again. Making a fuss right at the beginning like this would be a bit like writing to the Daily Mail from your honeymoon to get the stinkiness of your new husband's socks into the public eye. A total over-reaction and probably damaging in the process.

    A consultant can become as important in your life as a partner. You need it to be a marriage, not a one night stand ;)

    1. A consultant can become as important in your life as a partner. You need it to be a marriage, not a one night stand ;)
      This sentence is very true.

  6. This makes me want to throttle someone, but that probably wouldn't help.

    I've never had things quite that bad (and it helps my issues are only disabling rather than life-threatening), but I do know the problems of building a relationship with a doctor until the point you can get them to do what you need, rather than what they want - fingers crossed! I just got that this week, but only in one area of what I wanted, and only because my GP started chasing the hole in her medical notes long after I had given up in disgust.

    Infuriatingly I then heard two separate stories of similar happenings to your's over lunch yesterday. I'm not quite certain if it's a continuing symptom of Doctor as God syndrome, or getting worse as the Tories try to water a pint of care to fill a quart pot...

  7. I can't think of anything to say that does this justice, really. You and your family are in my thoughts.

  8. Sending *hugs* from sunny Leith.

  9. Oh Sue, bless you, sending you a big ((((hug)))), and wishing you and your family a happy christmas and new year, and the hope that your health improves, stress makes it so much worse.

    Ive obviously missed part of your epic saga, but, why do you have new Drs? Have you moved areas or something?

    There is nothing worse than the pure arrogance of Drs who just will not listen, I think they do it because they deal with a lot of really "thick" people who they do have to spoon feed every detail to and who then ask really stupid questions thus confirming the "all patients are stupid" idea.

    Probably like you, I know my body very well and generally know exactly what is going on where. I had to learn the hard way as when I was trying to get my UC diagnosed at age 23, I was told I had a "nick" in my bottom that was causing me to bleed! Off I went with a prescription, which I never bothered collecting because I knew he was wrong. at the next visit a few days later I told him he was wrong which didn't go down well but I had to spell it out, when I went to the toilet I had pure blood diarrhoea, at which point he said oh! and gave me tablets to take still not telling me what was wrong! So after the tablets ran out I was back again and luckily was seen by a different Dr, who seemed shocked I'd not been told I'd have to take them for life! And told me what was actually wrong! I've since had my large bowel removed and I had what they called a "J pouch" formation where they looped part of the small bowel together to create a "reservoir" for at least some of the contents to collect,so I'm not on the loo all day, and that was rejoined to the rectum so thankfully I don't have a bag! but nowadays the surgeon who did that now has changed specialties so its hard to find a Dr who knows what a "J pouch" is so back to having to explain what has been done and telling the Drs their job again!
    Take care Sue :))

    Best wishes,

    Sharon xx

  10. Gently hugs and best wishes to you Sue. Why are they not reading your notes? I hate to see you having to go through this yet again, it's ridiculous!

  11. so very sorry to hear this sue but as I've said before only st marks hospital can if anyone can look after you properly and sort you out if at all possible and with kindness

    if of course your there and they have moved you to st marks and they have not read your notes then this country is in much worse shape then i thought and i will have to stand corrected

    all my very best wishes to you and your family sue
    Prof. Robin Phillips is very good and in my mind is the best in the world and should at all times be the first port of call to anyone who has any type of bowel problem however small

    his waiting list is probably long on the nhs and his private fees are high but for those that like the best then that's where to head

    I myself have just had a small op on my eye and despite the op going well one of nurses managed to give me a drug in which i should not have had which made me sick and after a eye op that's the last thing you need but that's the state of play today and will get worse under this type of government always putting it's oar in on subjects it hasn't a clue on and when they get ill there straight off to the King Edward VII's Hospital Sister Agnes shame on them

  12. In a lot of cases going public with a story of incompetence or abuse while you still have to deal with the people involved is unhelpful. What we need is some concerted movement to tackle medical abuse, both by doctors and nurses. This is an endemic problem in many hospitals across the country - there is a culture of arrogance against knowledgeable patients (which often means the long-term ill) and a culture of disbelief and spurious psychological theorising against people with certain conditions, like ME (and this affects people with anything that can ever present a bit like ME -- Ehlers-Danlos syndrome being one of the more common examples). The right-wing press regularly runs sensational stories about abuse in hospitals, but that's because it wants to destroy the NHS. We need to reform the medical profession's culture, not destroy the NHS - it's either the NHS or nothing. They would be just as bad if they were funded by private insurance.

    A few months ago I put the idea of some sort of medical bill of rights or human rights charter to Dr Charles Shepherd (of the ME Association) at a screening of Voices from the Shadows which is about the abuse people with ME suffer. He wasn't keen on the idea, but some sort of campaign is necessary, and it needs to bring together the EDS people (HMSA), perhaps the Crohn's support groups (don't know any of them) and the better ME groups like the 25% Group and Tymes Trust (there are bad ME groups who are in bed with Wessely and pretty much say nothing is wrong).

    I wrote this a few months ago, after Emily Collingridge's death, which contains a mini-manifesto for "fear-free healthcare":

    Fear Free Healthcare

  13. This is a very distressing situation, and one that many of us can relate to, I am sure.
    But what is the root cause of this? Is it lack of capacity in the NHS or is it the (apparently universal) tendency of clinicians to want to assess things for themselves before taking action? Or indeed is your condition so unusual and/or variable that they cannot 'define' it and therefore agree on a consistent course of action?
    I speak as someone who has also experienced the variablities of the NHS, and sometimes felt like screaming at the consultant. But I am fortunate in that I have been able to take a long-term view and can now see that the overall levels of care and concern for my condition were actually very high, although it did not feel like that in the dark times.

  14. Sue, your experience sounds almost Kafkaesque! I see a case of the inability of the scientifically trained to look beyond the text book and properly view the evidence before them. Meanwhile you're the one who has to endure this maddening behaviour.

    I can empathise having had 10 years of mis-diagnoses that was finally remedied by a mixture of a good, caring GP, consultants who knew their stuff and a brilliant theatre team, although I did come round half way through the procedure, yelling for someone to put me out cold again!

    Luckily my problems were fairly common although not the extent and true nature of my condition. For some this is obviously not the case and the medical profession is behind in their knowledge of certain types of disease and illness. Lets hope that someone soon actually grasps what you're really going through and can put 2 and 2 together and come up with 4 instead of 1 and a half.

    Finally, I'd link this to the one size fits all attitude of this and recent governments in the way they deal with those having to rely on a benefits system that is failing many. Are we really that civilised a society when it's members have to go through such harrowing ordeals as a growing number have to?

  15. This is so horrible Sue. Hear and understand your situation re your doctors and wish someone would start listening instead of waiting for another crisis...Huge hugsxxx

  16. Aaaaaarrrrggghhhh! Lots of love and sparkles xx

  17. Your post made me really angry. Nobody should endure such a treatment in an hospital.
    I cannot find but inadequate words to respond to this.
    All my best wishes

  18. Sue

    am disappointed with yr comments you clearly have no idea what pressures and strains NHS staff are under at the minute. It is common place for 1 nurse to be looking after 30+ pts and for 1 doc to look after 200+ at night. Who does anything about it? You think the managers care? They are the ones tucked up at night.

    The NHS was being finished up long before Cameron got it. Things like PFI etc have turned some fat cats into even fatter cats.

    Maybe you would value the NHS more if you were given a bill every time you left hospital for the value of the care you received.

    It seems Sue you want a doc and nurse to be at your beck and call when you wish. It does happen but not in the UK. In the US e.g you can have such a thing but you will pay top whack for it.

    Its only when something is gone do people appreciate it. When the NHS goes and people have to start paying for things out of their own people maybe then they would have wished they hadnt moaned and criticised it so much when it was around and they would realise just how much good heathcare costs. At the minute people take it for granted and have no idea :(

    1. I think this comment is wholly unfair. Sue like me I'm sure - having spent a long time in hospital over the years knows or at least can imagine the strains staff have. What she is complaining about is drs not listening to her. not listening when she explains the norms of her body and what the warning signs are. When you have an illness/disability for a long time you learn a lot about your own body that can't be found in blood tests and that can help to avoid costly emergency procedures.
      I'm sure sue, again like myself, is most thankful for the nhs without it we may well be dead. Please do not be so venomous in your comments without knowing the full story.

    2. When a doctor has 200+ patients to round on in a day they aint got time to listen to your ying and yang thoughts.

      If you want a concierge type medical service which does exist and I think what you expect e,g in the US then expect to pay £££ for it.

      As above as privatization and charges come into healthcare as the NHS disappears you will then reflect and perhaps regret about how much you complained over something that no longer exists. Only when you pay for something do you appreciate it. Sad but true.

    3. a good surgeon always knows his patient's irrespective of their condition and looks in on them to make sure all is well as if they were or a member of their team to make an error they alone would be accountable

      I think how sue has been treated has been down to a poorly run hospital overall of which there are many

      There are however some top class hospitals i know of and their top class because they have been diligent in choosing the right calibre of staff and not compromising

      The standards of the public overall across all aspects of life in which they deal with the public are well under par and wonting and that includes most mp's

      The mp is supposed to set a standard and continually fails to do so hence the problems the public face day in day out it has nothing to do with money

      you either care as a individual or you don't and it's as simple as that at the end of the day

    4. why do u think the royal family dont use public healthcare? double standards?? says it all really.

      the royal family is about as much use as MPs tbh

  19. Oh Sue I'm so very sorry. Gentle hugs and much sympathy. This kind of thing is often why so many spoonies put off seeking treatment when their condition worsens;they just can't face the rigmarole again. I can't express my rage at how unfairly you've been treated.

    Lots of good wishes and I hope you know how many people are thinking of you and wishing they could help. Talking of which, if there is anything that would help you and your family over the next few weeks that your friends on the Interwebs could provide, please please ask somebody to let us know.

  20. I'm so very sad this is happening to you with a young family who need you. If only the "Experts" could listen to their patients, and stop treating them like liars.

    A very sad way to live life.

  21. Hi Sue, I've been reading your blog for sometime now and I'm so sorry to hear about your situation. You are so inspiring and brave. I'm sad to see you also have your very own troll who comes across as a very disturbed individual, they obviously need help! I hope things improve for you Sue and that next year is a better one.

  22. Hi Sue
    Been reading for a while now and I also have read what you have written on for the Guardian standing up for disability rights.
    I have this silly disease its so frustrating to have to start at the beginning with doctors. "Stomach feels nice and soft" "Normal bowel sounds" Have you ever had a faecal calprotectin test? From what I read they are pretty new. I had one recently and it proved the extent of my disease in a way someone poking at you with a stethascope doesn't really. I got a 1900 when a normal person's max is 70. And don't you love TPN? It made my skin lovely.
    I have started a blog about my experiences in hospital recently. it helps to write about it all.
    Hope those doctors start behaving themselves.

  23. Hi Sue

    I am so pleased I found this site. I have UC, and it is so difficult to relay the day to day difficulties of living with bowel disease - mostly because when I am feeling relatively well I don't want to relive the horrors of when I'm not. It is very brave of you to articulate the reality of living with this disease. When I am faced with these assessments I tend to gloss over the worst parts - and it makes me feel so much better to know that others do this too, and make up all sorts of stories and excuses rather than explain how ill we really are.

    I have lived this denial for 30 years and it's almost as exhausting as the disease.

    I have now been cut off from Incapacity Benefit and refused medical treatment. As I live in Spain (trying to get back to UK but that's a whole other problem) this is a major problem for someone as ill as I am. Relying on friends but dependence of this kind get old pretty fast.

    Trying to sort out my Letter for Reconsideration and then appeal - but no help here (no local CAB in Spain). In a pretty desperate situation - but if I am forced to end it all, I will let every media outlet I can think of exactly why I've done it.

    Keep up the good work. Wish you better.