an ode to blood and guts

and the blood always blood it comes and it goes but it’s always back and the pain how one deludes oneself into rationalizing it until it returns and it twists between organs and connective tissue and the prisons of different sorts small rooms boxes, suffocating and the mind and the belly and the fact that you can’t sever the connection no epidural to be given as in childbirth no window of hours or of days before it will be gone women will scoff yet i would trade them with absolutely certainty i will take your pain and the knowledge of … Continue reading an ode to blood and guts

may 19th = world IBD day

So, when I googled purple ribbon this morning, it came up with a lot of stuff. Turns out, a lot of organisations are into purple as their colour of choice. Who can blame them? Purple’s grand. But today, purple belongs to US. Because, dear readers, May 19th (remember, I live in New Zealand, and we live in the future here) is World IBD Day, and therefore I thought it only appropriate to post a reminder/educational post about the ‘wonderful’ world of inflammatory bowel disease. Some of this may be stuff that I’ve mentioned before, but it’s all important, and all worth learning about. Everyone knows that cancer is bad, everyone knows that strokes and heart attacks and all of these (admittedly awful, don’t get me wrong!) things… but ulcerative colitis and Crohn’s disease are often relatively unknown.  So I’m here, as I frequently am, to educate, and remind you of this particular facet of health (or lack thereof) that can be so debilitating. In the words of Janis Ian (from Mean Girls) – it’s a life ruiner. It ruins people’s lives.

I could rattle off a bunch of facts from Wikipedia and other sources, but that seems a little pointless. You can look that up yourselves. But the ultimate thing is, as with most chronic diseases, there is no cure. You can go into remission. You can go into remission for years, decades even. Or, you can not go into remission. You can toss back myriad different drugs and treatments, and still find yourself a decidedly sick individual. You inevitably put up with comments from laypeople about diets, and avoiding this and that, and ‘oh, that’s when you can’t have gluten?’. Not really, no.

If you don’t suffer from IBD, you cannot begin to understand how infuriating this all is. As I know I’ve said before, if I could nip it in the bud by avoiding bread and the like, don’t you think I would? Trust me, I’ve tried. Sure, I avoid certain foods, because they make me feel even worse, but it’s not as if by cutting them out I somehow heal myself. That just ain’t the way it works. My go-to ‘oh god, my insides’ diet involves cutting out fruit, vegetables, anything super greasy, anything wholemeal or legumey, all nuts and seeds, dairy as much as possible, and probably more that I can’t recall off-hand. Sounds like the opposite of a diet you’d subscribe to to get healthy, right? Exactly. It’s not to make me healthy, it’s just to avoid additional pain caused by too much fibre, too much milk protein and too much fructose. It sucks, especially when you’re still trying to work off weight gained in your last course of prednisone. But it’s the way it is. Tell me to avoid gluten again, I will slap your pretty face with my slice of white bread.

Check out the picture below. Probably not best for squeamish stomachs. Continue reading “may 19th = world IBD day”

twisted insides – a treatment rant

One thing that drives me a little insane is the ‘any alternative to medication is better’ attitude that seems so prevalent amongst many IBD forums that I peruse from time to time. It seems that every time someone posts their story, there are a million replies about the Specific Carbohydrate Diet, and about probiotics, and yada yada yada. Sometimes, people even mention visiting homeopathy specialists. Homeopathy. I’m hoping that they are confusing naturopaths (which I suppose have their place, but we’ll get to that) with homeopathy, because seriously… there are actually still people that buy into that? I just… what?? Okay. Breathe. … Continue reading twisted insides – a treatment rant

the peculiarities of ‘remission’

Remission. It’s a word I always see thrown around on IBD forums, along with flare. It wasn’t until the last six months or so that I even heard the word ‘flare’ used by any medical professionals I deal with… mostly because it was a foreign concept to me. The internet seemed to be full of IBDers who experiences ups and downs – and whilst I certainly had days that were worse than others, the fact that post-diagnosis (December 2010) I never had more than a couple of ‘good’ days meant that there just wasn’t any point talking about these supposed swings and … Continue reading the peculiarities of ‘remission’

on DRUGS (with PICTURES!)

It’s official – I have a love/hate relationship with prednisone. I’ve been on it for nearly two months now, and it’s the only thing that’s had any kind of effect on my UC symptoms. But, as previously mentioned, I’ve been tapering it… and my insides have been starting to play up a bit again. So after a chat with Jacqui, the lovely IBD nurse at Middlemore – and after she consulted with the head of gastro, who’s one of the doctors on my case, as it were, I’m back up to my initial dose – that’s 20mg a day, which … Continue reading on DRUGS (with PICTURES!)