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im just wondering what others experiences are with their teams.
so far I have
had my appts cancelled and rebooked months in advance, so a 2 week review became 10 months.
ive asked ibd nurses for a call back re flare and meds, never get a call back.
i was meant to start aza, but have only gone onto system now, even though I flounced out with the meds 6'weeks ago.
ive had a 5 min chat with the nurse when I was first diagnosed, given a lovely leaflet about medication support and all advice, just leave a message and we will call you back,,,never.
so, the aza, as yet again my 2 month review appt is ooooo 7 months henceforth, I've not started it.
get a call asking when I started, (obviously they panicked as it would have meant being unmonitored) got appt with the nurse,...erm....why can't I get this usually???? As I was ill, I cancelled, now I've been told I failed to show up!
im sorry for the moaning. When I was in hospital in Jan , they tell you the nurses get told you're there, so you expect some sort of follow up.
its never happened.
i feel literally like I am winging it. My last appt in April with the gi, he kept warning me about being steroid dependant, and I must ALWAYS tell the nurses I'm taking them. I've never swallowed one. Not once, not ever.
i was diagnosed in sept and not counting the surgeon as an inpatient and once at his clinic, I have had in total around 30 mins worth of 'time'
ive learned most of what I know from here and crohns uk.
ive been given so much conflicting advice between gi and surgeons too. Moan over sorry
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