World IBD Day: Six Things I've Learned in My 14th Year of Living With Ulcerative Colitis

19/05/2016 10:44 | Updated 19 May 2016

To quote Viv Albertine (musician, and author of Clothes Music Boys) "Any potential boyfriend, anyone who fancies me, please skip this bit..."

This 'bit' is about Ulcerative Colitis (UC), which I was diagnosed with in 2003, shortly before my thirteenth birthday. Developing an illness during my childhood obviously wasn't ideal, but with the gift of hindsight, I believe it was the most convenient time to develop it (as mad as that sounds).

Sure, I was the one in ill health, but it was my parents who had to organise and take me to my hospital appointments, talk medical jargon with the doctors, make sure I took the right medicines, and feed me doughnuts when my weight plummeted to a fragile five stone. My biggest concern as a twelve year old (apart from shitting blood, obviously) was completing the new Crash Bandicoot game on the Playstation with my siblings.

Have you tried to complete a video game when you're in the middle of a UC attack? It's pretty challenging when you're sprinting to the toilet every five minutes. My siblings were good to me, and hit the pause button 70% of the time. They probably got RSI from that, poor kids.

I'm nearly 26 now; I've completed Crash Bandicoot, and developed from a chronically ill child in to a chronically ill adult; which hasn't been the smoothest of transitions. It's taken me a decade to accept and effectively deal with the difficult lifestyle UC enforces, and I regret letting the condition get too tight a grip on me, physically and emotionally. A few years ago however, I had a break-through, which prompted what I like to call "the two years where I said "yes" instead of "no"', and had the time of my life.

Ulcerative Colitis is still a bit of a mystery to most people (myself included), but for anyone who's suffering with IBD, or for those who'd like to have a chuckle about bowel movements, I've listed 6 things I've learned in my 14th year of living with Ulcerative Colitis.

Trigger Warning: there's a lot of 'f*****g' and 'shi****g' in this blog (not simultaneously), so if you're offended by bad language, off you...pop.

1. A change in diet can ease your symptoms

Diet is proven to help with IBS, but this isn't the case for those who suffer with IBD (which is something I frequently have to explain to well-meaning, but misinformed people, who think the conditions are identical). Even with a good diet, if you suffer with IBD, you will still relapse. I'm lucky in the sense that I can still eat spicy curries, fatty junk food, and drink like a (very big) fish, without paying too severe a price for it regarding my UC.

If, however, I try to enjoy a delicious beef burger, tender bit of sirloin steak, or eat my Mum's lovely home-made Lasagne; OH HELLO - MY INSIDES ARE FUCKED! Shortly after I turned 22, mince meat decided to betray me and give me intensely painful stomach aches, and a shitty time with my UC. I decided to cut it out of my diet, and *touches wood* my UC symptoms have become less severe. I haven't had to fall back on a batch of (much undesired) steroids to see me through relapses, and I would highly recommend eating more vegetarian food, whether you're a UC sufferer, or not.

2. You can stay in a hostel (and have the time of your life)

When I'm ill, privacy is essential; and that's something which can't truly be achieved in a shared bathroom. My UC attacks are called 'attacks' for a reason; the shock of their arrival is like being punched in the gut. On my worst days, I can't leave the house, and I certainly can't wait patiently if someone's in the bathroom.

I have an immensely high pain threshold, which means my calm appearance betrays my actual level of pain; hence why people are surprised, or in disbelief when I tell them "I'm not well" because I look - well, 'well'. That's the Catch 22 of UC, you look fine (unless you're on steroids, then you look fat) but inwardly, you are fucked. It's great, but also infuriating.

But, it turns out; hostels are the greatest places to stay, ever - even if you have a chronic bowel disease - hurray! I took a risk in April and swapped my usual habit of hotel booking for a week in a surf camp hostel with friends. I'd been in good health before the holiday which helped, and I suffered a few stomach aches (probably due to the inhuman amount of olives I consumed) but ultimately, I was completely fine, and I didn't queue for the bathroom once. I wish I'd taken the risk earlier, and saved the ridiculous amount of pennies I spent on crappy hotels.

3. You can go to a music festival

I've blogged about this before, but I want to re-enforce that if you suffer with mild UC, you will be able to cope with 3 days in a tent. It's a lot easier than you think, so chuck your wellies on, get glittered up, and hit the mosh pit, kiddo.

4. Using your meds properly will help you avoid steroids (HALLELUJAH!)

As an eighteen year old, I had what can be medically described as "a first rate, fucking horrific time" on steroids. I'd taken them several times before, because they're the go-to drug when I have a UC relapse, but for some reason; this particular batch left me in a pit of anxiety and depression. Thinking, talking, and typing about it, eight years later, still leaves me choked.

I remember sitting in my living room, doped up and dazed, desperately trying to laugh at Dawn French in an episode of The Vicar Of Dibley. The sound of my 'laugh' was forced, hollow, and alien. I wept, silent, still tears; because I was dead. I was breathing, but everything else; heart, head, soul - lifeless. Absolute. Fucking. Emptiness. I was simultaneously terrified, and calmly suicidal. I endured this for a month, paralysed by my inability to articulate how mentally unstable I was. No-body should have to feel that way, steroid-induced or otherwise, but fortunately for me; I got better.

Much to my relief (and my family's), I came back to life after I'd finished swallowing all those terrible, terrible steroid pills. I haven't had to touch steroids for over a year now, because I've changed the way I use one of my regular medications.

I'd got in to the habit of taking all of my meds, including foam enemas, in the morning. It made sense; get it all over and done with, and get on with the day. I was genuinely terrified to either reduce, or change the way I used my enemas. Selfishly, I also didn't want to use an enema before bed, because a) they're unpleasant at the best of times, and bed is not a place for unpleasantries, and b) when I was in a relationship, the last thing I wanted to do was shoot some medicated foam up my arse before getting my freak on (apologies to my family who may be reading this, and still see me as a small, mousy haired child).

However, if I'd listened to the advice my IBD nurse gave me years ago, about using enemas at night, and not in the morning - I probably could've avoided a few batches of those monstrous steroids. When I finally took my Nurse's advice last year, I realised a) how much more effective enemas are if you use them at night, and b) I only need to use them on a bad day, not every day. I'm equal parts pissed off at my previous stubbornness, and overjoyed I've avoided those bastard steroids for 365 days!

5. You can hold down a full time job (and commute in and out of London on a daily basis)

When I graduated last year and quit my part-time job, the realisation I would have to work full-time felt like the equivalent of being whacked around the skull with a sack of stale potatoes. From the age of 16, I have secretly been panicking about trying to function on a 9-5 rota with a chronic illness.

Then, in July 2015, I got a part-time job in London, which eventually developed in to a full-time, contracted position. For over six months, I have been waking up at 6:30am, commuting in to London, working, and commuting home again; like a really boring, normal working person.

I still get stomach aches, severe bloating, and lots of uncomfortable, minor symptoms; but I've only had one bad day. On that commute, it was SHEER. LIVING. HELL; I was screaming internally with pain and anxiety about having to walk through a crowded carriage to get to the train toilets. Outwardly, however, I looked like the epitome of calm; kind of like how a bomb looks before someone detonates it. My GCSE Drama classes and National Youth Theatre training always kick in when I'm trying to mask a UC attack.

If twelve year old me could see me now, working in London, using public toilets; she'd be laughing in disbelief, then feeling really fucking proud of herself.

6. Having mild Ulcerative Colitis isn't something you should be ashamed of, or embarrassed to talk about (this one's still a work in progress)

On paper, I'm more than happy to crack a joke about the blood, the seemingly endless gut aches, the bloated belly, and feeling like you're a human volcano, but in real life; I'd rather implode than talk about UC most of the time. Also, it's hardly something you drop in to conversation when you first meet someone, is it? "Hi, I'm Kate, I'm almost 26, and occasionally my immune system turns against me and I shit blood and can't leave my house! What's your favourite colour?"

I am a fantastic liar when it comes to my personal health, and I've been concealing the majority of my symptoms like a pro, for fourteen years now. On a daily basis, from the moment I wake to the moment I fall back in to bed, I am constantly thinking about when/where/if I will need the loo (even on symptom clear days). I conduct personal risk assessments when it comes to every meal and every sleeping arrangement: "Will this delicious beef burger fuck me over tomorrow morning before/during work?" - "Does this house/hotel have more than one bathroom? How many people share it? What are the chances it won't be free if I feel ill?"...

These tiny, exhausting thoughts flooded my brain, and I let them control my life. Now, my thoughts are slightly kinder, more encouraging. Instead of panicking, my internal monologue says: "Don't worry mate, go for it, you'll have fun. 90% chance you'll be fine. If not, fall back on your GCSE drama skills..." - So far, that voice hasn't let me down.

The most ridiculous part is, 90% of the people I know may not have realised how frightened/ill I was over the last fourteen years, which shows how resilient and fucking sneaky I am. The latter's probably not something to gloat about, but you try concealing a chronic bowel condition for a decade; I deserve a brand of toilet paper named after me (or something more glamorous?)

*winks at own reflection in laptop screen*