We interrupt your regular writing programme for an IBD-flavoured update!

Ew. I don’t even want to think about what something IBD-flavoured would taste like. 

Yeah, let’s not go there.

Instead, let’s go onwards from shitty titles (HA!) and examine the matter at hand. It’s been a while since I made a health related post, so here’s an update. Maybe this radio silence led you to believe that all was well in the Raw Library intestinal tract? Sort of. Not really. I wish.

See, as I’ve mentioned before, I’m on an uber-cocktail of meds for my merciless colon’s deathwish. No prednisone anymore, thank god, and I don’t think I can handle that jandal again any time soon. As much as being super sick with colitis symptoms SUCKS, at least I understand exactly what’s going on, and the only mental involvement is frustration and pain synapses firing. On pred, sometimes you don’t know which freaking way is up. 20mg, and my brain loses its ability to think rationally. Meltdowns, as mentioned here. The weight piles on, the face blows up – I’ve only just gotten to the point where I think I’ve lost the moonface swelling. But no prednisone doesn’t mean anything else has eased off, oh no… I’m still popping the mesalazine and azathioprine like a champ, and going in like a good little sick girl to get my infusions every eight weeks. And I’m still not better.

At this point in time, I’m kind of already scraping the bottom of the barrel. I know that I’m not being quite as careful with my eating as I could be, in terms of avoiding trigger foods, but at the same time, on days when I do avoid the naughty things, and when I manage to soldier on without coffee, I still have aches. I still don’t feel right. I hate hate hate it.

At this point, my bathroom trips are still probably already greater in number than they would likely be if I had a j-pouch. So it’s hard to find a reason why I shouldn’t just tell me GI team that I want out, when I’m all out of meds that I can try (I know some UC patients have success with Humira, but it’s not available for colitis patients in NZ, only CD/RA/AS ones). If they said to me tomorrow, ‘Briar, we can book you in for surgery, what say you?’… I think I’d say yes. It’s more than a year since I started coming to terms with the fact that it was a real possibility. 

So that’s where I’m at. I’ll be back with more details in a few weeks, once I’ve had my next infusion and next GI appointment. Who knows where I’ll be at then…

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