Monday, 30 March 2009

The Drugs Don't Work...

They make you worse.
But I know I'll see your face again...

I bloody hate the Verve - overblown, self-aggrandising rubbish - but old Mr Ashcroft was blooming right here, assuming he was refering to either the face of my consultant or facing up to UC. I had stopped posting here, partly because I'm bone-idle but, mostly because last october things were bumbling along nicely - low steroids, no symptoms. Everybodies happy, right?

Wrong. People up on Level 9 of my favorite hospital were unhappy about my steroid intake (5mg/10mg alternate days) and decided it was time I used an immuno-suppressant to get off them. After much gut-wrangling I finally gave in (I have to say they used scare tactics, telling me stories of a guy who got toxic-megacolon (heavy metal band anyone?)), although I should've listened to my heart. To cut a long story short:
  • started azathioprine (with noted low levels of TPMT) at low dose 50mgs daily.
  • 2 weeks later felt rough - fluey - looked up side-effects, they suggested i could ride out these feelings.
  • started feeling nauseous.
  • hung on til a pre-arranged consultant appt (with rheumatologist - associated arthritis).
  • whilst in waiting room overcome with enormous need to puke.
  • puked in ladies loo.
  • moved to an examination room where extended stint of non-stop puking was heightened by puke turning into blood.
  • rushed into A&E when repeatedly vomiting blood and arms and legs started to paralyse (3rd March).
  • rehydrated, and kept in for 4 days cos liver had gone really bonkers and bottom all over the place.
  • discharged after several tests, anti-biotics, IV steroids, with no real idea what had happened, but everyones best guess being it was the drugs wot done it.
  • had a colonoscopy a week later (14th March) - nurse reported (doc couldn't be bothered to wait for me to come round, it was a saturday after all - golf course was waiting, eh?) inflammation had been found in rightside colon... but I couldn't get the idea she was holding something back out of my head.
  • saw clinic nurse practitioner three days later, to discover the missing info: the doc was recommending SURGERY... arrrgggghhhh.
  • persuaded her to persuade him to try 6MP.
  • started Mercaptopurine last weds. Took one dose, by that evening was glued to the loo and feeling awful.
  • haven't taken any more... Phoned UC/Crohn's helpline at hospital for advice, further appt etc. Called twice and left messages.
  • no return calls.

So, here I am now. It's all up in the air. The hospital aren't returning my calls so I'm enjoying a couple of days ignoring the future. But sooner or later they're gonna get me in and I'm gonna have to start arguing about the need for a colostomy. I don't want one. Not yet.