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.

image courtesy of WebMD. please don't try to diagnose yourself from there.
image courtesy of WebMD. please don’t try to diagnose yourself from there.

I would say from my amateur but well-educated perspective that this is probably a pretty nasty case of UC, but, to be honest, some of the pictures I’ve seen of my sigmoid colon aren’t far off from this. I can’t speak for how mine looks right now, because I’ve gone through a few months of relative normalcy – by relative normalcy, I mean something maybe resembling what a run-of-the-mill IBS patient deals on their bad days (but I’ve had it every day) with rather than someone with full-blown UC… so not exactly healthy – but it’s been descending back into Bad Belly of late. Glorious. And guess what. I’m at the point where there isn’t really anything else they can do for me. I’ve been diagnosed for about two and a half years, and already I’m out of treatment options. The only thing that’s ever really kicked UC’s butt for me is prednisone, and that isn’t a longterm option, at all.

In case any of us have forgotten, here’s what I’ve dealt with –

– Colifoam enemas. Kinda helpful, but problematic in their own ways
– Pentasa enemas. I could just not make them work, and they didn’t seem to work, so it was a match not made in heaven.
– Asacol. Still on it now. Doesn’t really seem to do an awful lot, mind you.
– Azathioprine. Immunosuppressant. Also doesn’t seem to do an awful lot. Still on it.
– Infliximab. Infusions. Pain in the ass. Though they were making it work for a while, but when I started getting symptomatic again like a week and a half ago, when my next infusion was still about three weeks away, I’m really kind of giving up on it, six months in.

I also took part in a trial for another UC med, last year – similar to infiximab in mechanism and whatnot, but it didn’t take, at all.

So, six drugs, plus prednisone and a hell of a lot of tramadol and paracetamol. And here I am, back up to 15+ BM on bad days, and minimum 6 or so on bad days. WHAT. That ain’t healthy.

Should a nearly twenty three year old girl really be thinking about telling her GI that she just wants to have her entire large intestine removed? Probably not. But that’s reality. People think of bowel disease, and they think of 80 year olds with bowel cancer and colostomy bags. Problem is, there’s a hell of a lot of young people out there with IBD – peak incidence for Crohn’s is in childhood and teenage years, and UC is in late teens/early twenties. That being said, I’ve never encountered anyone anywhere near to my age on the gastro ward. Plenty of elderly people coming in for routine colonoscopies, getting diagnosed with diverticulitis and suchlike – not good things, mind you, but it’s one thing to get that diagnosis after decades of healthy, happy life, and quite another to be facing an ileostomy when you haven’t even had time for a quarter life crisis yet.

All this said, though, I’m pretty… at ease with my situation. I feel sorry for myself, sure. I wish things were different. I really, really do. If I didn’t have UC, I could be overseas right now. I could have postgraduate qualifications. I could have decent grades.

But what I do have is a brilliant set of medical staff concerned about my case. I have family looking out for me, I have a most excellent boyfriend to look after me when I’m feeling absolutely shocking. It could all be a hell of a lot worse.

What I’d like, though, is for more people to understand, without me having to explain everything in detail, while leaving out certain unsavoury details, depending on the audience in question. I’d like for people to know what a big deal this is. It’s not just a stomach ache. It’s pain that brings you to tears, keeping you in the bathroom more than anywhere else, puts your in hospital. It’s pain that can’t be shared, but if a little more outreach could make it be pain that’s a little more understood, it would help the lives of a hell of a lot of people.

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Basically, I deal in words.

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