I've been in hospital three and a half weeks now. Normally, I'd have written a blog post most days, but I've just been too ill. I can't remember the last time I was too ill to write. I always write. Even if no-one ever read it, it was my safety valve, my confidence, my way of understanding my own feelings and emotions. I've written an hour after major surgery, during a small-bowel enema (!) and whirling in the middle of a heartbreak.
But this time, I've been too ill.
I tell you all this to try to convey just how ill. I can write bombed out of my head on opiates (sometimes it's more interesting ;) flat on my back unable to get out of bed, (actually I do that quite a lot) faint from hunger after days of vomiting - nothing usually stops me. But this did.
I didn't come in here very ill. The crohn's was broadly fine (well as "fine" as it ever is...) but I'd been getting chest infections for months. My local hospital didn't want to know because all my notes and specialists were here in Cambridge, 130 miles away from home. It became clearer and clearer that I needed a whole MOT of tests and investigations, so the only way was for me to have them done as an in-patient up here.
Over the years, the many, many years of trying to control this cruellest of diseases, I've learnt a thousand things about my body. Mainly I've learnt that I'm rather a delicate flower. (and the Tomboy in me growls) I react very badly to most medications. There are only two anti-biotics I can tolerate, I'm horribly allergic to most painkillers - especially morphine. All of the crohn's drugs, one by one, have given me unbearable side effects. The contrast dyes or barium they use for their tests makes me sore for days, I can't tolerate their gloopy, glucose-packed feeds or their sulphuric enemas that rip through bodies like napalm. I'm even intolerant to calcium and iron supplements, B12 shots and aspirin.
So, slowly, slowly, I learnt that the best treatment for me was simplicity. No more, no less. Good, healthy food, cooked from scratch. No toxic chemicals, no pointless additives, not even thickeners if a reduction will do. No neon drinks or fizzy pop. No synthetic creams or juice "drinks". Add in a dose of sunshine and I feel zingy and alive. Sunshine, fresh air and simple, freshly cooked food.
I think of it like a set of scales now. The most sensitive scales - feather sensitive.
If I go away for the weekend and eat someone else's food, even the thickener they use in their sauces might send me vomiting through the night. Eating a little later, or a little earlier, not being able to eat little and often, (because most people don't do that) all play havoc. Too much cream or too little salt, too much starch or not enough protein. Even the change in water can be enough.
I balance a tightrope every minute of every day and it's become so automatic, I forget I'm even doing it. More importantly I forget it's actually a full time job.
When I came into hospital, I was immediately pumped with litres and litres of contrast dye for a CT scan, then more for an MRI. I mentioned that it made my crohn's flare up.
They insisted I drank supplement drinks to "build me up" - a cacophony of chemicals. I suggested I was better just following my normal finely balanced diet, but they were convinced it would help.
Then they changed my painkillers. As I always do, I warned them that it had never worked out all that well. I reminded them of the times I've temporarily died from morphine or screamed and writhed through a night of new meds. This new drug was a morphine derivative, and they assured me it would be fine.
Next they inserted a tube through my nose, deep down into my bowels to feed me through. I mentioned that feeds had always made me sick, but the Dr said that couldn't really happen. I asked him if he ever blushed when he told someone who had actually experienced a condition for 28 years what they could and couldn't feel, but he just smiled and assured me it was for my own good.
By last Thursday I was a mess. By the following Wednesday, I was in terrible pain, vomiting every twenty minutes or so. A headache so splitting I tried to keep one eye shut. I was so dizzy and sweaty they had to keep changing my sheets. I couldn't talk, get out of bed or eat at all. I couldn't even sip a cup of tea and keep it down. Suicide nausea filled every atom, I felt sick in my toenails, in my hair. I didn't want to blink I felt so sick. I went 4 days with no nutrition at all as the feed kept drip-dripping into me only to bounce back out. I went 3 days with no fluids.
I kept telling them it was the feed - I'd had it once before and spent 24 hours vomiting non stop - but they were still adamant they knew best "Just try one more night Susan..."
I kept telling them it was the new drug - I recognised the splitting headache as a precursor to the dramatic morphine-crashes of earlier stays. I recognised the sweats and the dizziness. What's more, morphine doesn't relieve pain for me at all, and so I endured that, raw and untreated too.
I kept telling them the contrast dyes gave me constipation and inflammation, but they said it was "for my own good - you do want to get better don't you Susan?"
Finally, two days ago, I called a halt. I asked them very firmly to stop the new painkiller, to stop the toxic feeds, to stop the new vitamins and re-introduce my old painkillers. I made them pull the tube out of my nose just to be sure.
And here I am, this morning feeling perkier than a new born lamb. I might actually gambol.
I'm hungry, I'm thirsty, the suicide nausea has passed, the pain is back under control, I'm cheerful and the headache has gone.
No-one will realise that I was right all along. No-one will remember my awful reaction to the feed in time for the next patient. No-one will remember that their so-called "safe" morphine based drug does not avoid allergy for all. No-one will finally accept that certain painkillers actually just do not work on me. The dieticians won't remember that this particular feed nearly killed me. They will still assure the next patient that "you can't be allergic to it" or "it can't get trapped it's only a liquid" No-one will make a mental note and avoid CTs and MRIs in my case next time.
I know this to be true, because the same thing happens every time I'm in hospital. I'll carry on having the same battles, the same tortuous process of elimination, the same miserable episodes We will continue to flush billions and billions of pounds down the drain until we :
LEARN TO LISTEN TO THE PATIENT.
I've been on a horrific, agonising journey; enduring not living, surviving not healing and finally, I just ended up back where I started.
Don't get me wrong, the Dr's did what they thought was best. No-one was negligent, no-one cruel, they just didn't listen. Until they do, we will continue to throw billions of pounds away every year, not to mention the unnecessary suffering we will cause along the way.