I have Ulcerative Colitis. I don't even get the cooler older sister Crohns that people have actually I don't know, heard of. So I don't even get to name it mostly, I just say 'it's a condition like Crohns'. Diagnosed five years ago, and something of a dirty secret of mine since then. It's not, let's face it, a particularly sexy disease is it?
What is it? well this blog here explains it better than I do in medical terms. But basically it's an inflammatory bowel disease and autoimmune condition. Incurable, if treatable with a whole host of secondary symptoms that make life super duper fun. And of course it's about stomaches, and let's face it, poo. And nobody likes talking about that.
Funny that I spend my professional life shouting people should talk about HIV and sex, but my own illness, I hide in the non-gay closet over. It still very much feels like 'nice girls shouldn't talk about that' but well, since when have I been a nice girl anyway?
So yes, I have Ulcerative Colitis. It's a big old bag of not fun. But it's also a hidden chronic illness, which comes with a whole bag of issues. Including if I'm honest a sense of shame about it. That because I usually function fairly well, that I'm not ill 'enough' to claim chronic illness. That if it doesn't totally disable me then I'm not impacted enough to talk about it. But of course it does, I've just adapted, and of course there's the looming possibility of what it might do to me in the future.
My diagnosis was awful. From about 9 months going back and forth to GPs (not their fault, even when they know what it is they have to 'prove' they've tried enough before referring). I was on peppermint pills for months. Because it settles a stomach. They do nothing, funny enough for autoimmune disease.
It's a terrifying illness pre-diagnosis. Mainly because your body offers up a vast array of symptoms that make no sense in isolation, or indeed together. The most terrifying of course is bleeding. Yes. You bleed when you poo (I said this was going to be honest). I don't really have to explain how this is terrifying right? Also often accompanied by excruciating pain. Let's be real about this, this set of symptoms, especially if like me, you come from a family where everyone dies of Cancer, you pretty much think that's what you're going to get. Added to this around the same time I got pulled in for a dreaded second Cervical Smear, and I remember saying 'I always knew I'd get Cancer I just thought I had a bit longer than 30 before I did.' It was a terrible time. And didn't get much better with diagnosis.
And oh the story of my diagnosis. I went to the hospital. I got poked in ways I will spare you. The one Doctor called in another (always a reassuring sign, right?) and muttered 'UC right?' before the other left. He gave me a cursory account of the condition, packed me off to X Ray and out the door.
Bad enough.
It gets worse.
The next day I'd gone to London, to see a show. I'd gone straight to lunch with a friend and didn't pick up my phone until about 3. I had a message from the Consultant that boiled down to 'You need to come back in' Well that's not a message you want right? Right. Between my Mum, his wonderful Secretary and I we spent a couple of hours chasing phone messages. He'd left no indication of what, why or how urgent. And the longer it went on the more panicked I became. Did I say all this was taking place in Paddington Station? at one point I was crying so hard a woman walked past, walked into a Pret, and brought me back some tissues.
Long story short, the last time I saw The Drowned Man I spent much of it convinced I was dying (but hey what a way to go...)
Anyway it turned out there was an issue with clarity on an X Ray. Which you know, would have been nice to know. But the nightmare didn't stop there. Which treatment to have varies wildly from Doctor to Doctor, and I was on a personal mission to avoid being put straight on Steroids. The ins and outs (pun intended) are not important. But eventually we settled on one of the milder medications, and a 'wait and see' attitude.
And so it's been five years, and that's where we still are. Things are no worse overall, though it's an illness that flares, so some days, weeks and months are worse than others. I'm on asacol, a form of mesalazine, which, well let's face it I don't know what it does but for now it works ok. Since the first year went ok I was moved to nurse led treatment, which is a dream. I go in, she remembers me, and as long as nothing much as changed we carry on as we are. I love my IBD Nurse for that attitude. When it needs interference, we'll interfere.
That's not to say it's plain sailing. Others with chronic illnesses will recongise maybe the difficulty in taking medication daily. Especially when it's for an illness you can't alway 'see' or 'feel' you think you can come off them, you don't need them. There's a sense of shame, about taking them. About being broken. So you go off, you get ill, you make things worse. Chronic illness diagnosis is a mental health impact as much as a physical one, and it's taken me five long years, and no support on that side to figure that out.
And physically too, there are times when it's, frankly horrendous. Not only does my digestive system decide to wage war against me, in many disgusting and painful ways, but there's a multitude of other symptoms that go hand in hand with autoimmune diseases. Tiredness. I often wonder why I'm so exhausted, and it turns out to be a bout of chronic illness related fatigue. Muscle and joint aches are another one. Side effects from medication. My migraines also. It's all a wonderful disgusting mish-mash.
And then there's the fear. The fear looking forward. Yes there's the increased risk of bowel Cancer, though actually with regular screenings and *Shudder* more colonoscopies than I'd wish on my worse enemy, it's likely anything of that nature would be caught far sooner, so hey maybe I'm lucky!?
But then there's the very real likelihood of having an ileostomy or colostomy. Fun times right? (basically removal of large chunks of the bowel and having to, well have a bag to do all that stuff attached to you, depending on how it's done). I'd be lying if I said I never thought about it, or it didn't scare me. But it is what it is. And in the last year, watching Youtuber Hannah Witton go through it, a bit younger than I am, and cope, gives me hope it'll be alright- if not easy then alright- if/when it happens to me.
In fact for anyone curious about all of that, I highly recommend her videos:
And so that's it. That's my dirty little health secret. One that's harder to admit than coming out of the closet. One that doesn't affect me, yet affects my daily life constantly. As well as my mental health. But it's worth being able to talk about. To say that maybe cancelling plans last minute isn't because I'm a ditz (sometimes it is) sometimes it's because my body just doesn't want to play. And it's worth sharing for that hypothetical day in the future where it all goes really wrong. Or to help someone else out there too.
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