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