Funny how often Talking Heads comes to mind when you’re struggling with Crohn’s or Ulcerative Colitis.
It can constantly feel like two steps forward, one step back – or worse the other way around.
After more than year of daily paracetamol or stronger to combat the pain from perianal fistulae, we, (which if course means I) are trying to get me infection-free to start Infliximab, which is supposed to heal up all those fistulae, (apologies for using fistulae rather than fistulas – classical education).
But that seems much more easily planned than done. After my most recent stay at Edinburgh’s Western Infirmary, (6 days, en-suite shared with five others, caring staff, no booking required – n.b. breakfast menu is a basis for negotiation rather than a personal selection), I was on a two week course of two different antibiotics. Nice and effective up to a point, but no cigar – and they won’t let you have a cigar at the Western either, but that’s a different story.
So despite an approach which appeared similar to a hammer and a nut, I am still “infected” around the rear end. But hang on – a couple of surgeons over the past year have said there is always some sort of culture going on around there, (and it’s not high art), what with underwear, trousers and plenty of sitting around, (when it’s comfortable enough to do so). Perhaps there is something in naturism and letting the air flow. In Scotland. In February. Hmm.
So the depressing bit – and the point here of course is that you may have been through much the same sort of dilemma – is will I ever return a swab which shows me infection free and therefore, will I ever be given this Infliximab, (which is taking on a Holy Grail like status all of its own the longer I wait).
All in all, it’s not very conducive to a positive mindset.