Living with Ulcerative Colitis

I was diagnosed with Ulcerative Colitis when I was around sixteen years old – somewhere between 1998 and 1999. I recall it as stressful, uncomfortable, painful and, most of all, out of the ordinary. Imagine all that teen angst coupled with an inflammatory bowel condition. Life’s hard enough at that age without worrying about where the nearest toilet is.

The things I remember most about that time, between the age of sixteen and eighteen when my condition was at its worst, include both positive and negative experiences. I’ll get the negatives out of the way first. Ready? No, really, prepare yourselves.

At school, I shit myself. Yes, really. It happened in Spanish class. Basically, my UC was at its worst – it was so bad that I couldn’t control it and, being the shy kid afraid to leave class without permission, waiting for that bell to ring (it should have been only a minute but it felt like an entire lifetime) I couldn’t hold on any longer and, unfortunately the humiliation of standing there with crap in my pants was so painful that I froze, let everyone think it was a smelly fart. Isn’t that awful? Horrendous? I was SIXTEEN and full of all the body worries regular kids were experiencing, never mind not being able to hold my poo inside. I’ve only ever told my mum and my husband this story, I’ve never admitted it to anyone else out of horror and embarrassment, even though I’m sure everyone knew at the time. Well, you grow up, you learn, and that was a hard lesson for me – after that, I had no qualms about removing myself from an uncomfortable situation. I still don’t, and I don’t care if there’s an authority to tell me otherwise – if I’m not comfortable, I’m changing my situation. I wish I’d felt confident about this pre-Poogate. I’m telling this tale now, publicly, in the hope that someone else gets comfort or confidence from it.

Other negatives? Taking eighteen pills a day. They included steroids, and how my body ballooned. My face resembled a loaf of bread, my eyes tiny little bits of coal shoved into the dough, my squint teeth even uglier, my fine, curly hair straggly and thin. In addition, I had to be careful about what I ate; I couldn’t just enjoy a McDonald’s with my friends on the bus (though, in the end, chicken nuggets were okay) because as soon as I ate I needed to use a toilet. The tiredness that came with going to the loo between five and ten times every night for months was chronic, for me and for my mum. The sharp, painful tummy cramps, at times, had me doubled over. The feeling of sickness that crept into my mouth was gross; beads of saliva gathered, an indication for me that needing to go to the toilet was imminent, and that always meant that I had to find a loo within seconds, no matter where I was. Thankfully, there was only ever that one accident – perhaps something that needed to happen so I could learn my limits and how to plan my life around them.

It was a horrible, ghastly time but there were positives too. Like, being seventeen, and being released from hospital after two weeks on a drip, having lost over a stone in weight and all that steroid ‘puff’ – I immediately went for a take away with mum, enjoyed the pleasure of solid food, the kind that is so bad for you but tastes so good, especially after ‘nil by mouth’ for 14 days. And, in turn, being seventeen and a stone or two lighter than before invited attention from boys, boys that had looked at the other girls but never at me. I don’t think it was being ‘thin’ (though boys back then did seem to prefer a slender girl, with Christina Aguilera and Britney Spears being the poster girls of choice) but maybe more to do with my attitude, that my hair had grown again. I was looking healthier and thus feeling better. Another positive was being able to resit my Higher English exam the following year because, I pretty much failed them all, not surprising given that I was in hospital and all of this bad health was at its peak in the months beforehand.

I learned how to live with Ulcerative Colitis. I knew which foods upset my stomach, my friends were so understanding and supportive (they’re still my best friends), and my mum was there through it all. After she saw me in hospital, exhausted, drained, and one IV drip away from a colostomy (at one point I can remember being almost unconscious but distinctly aware my mum was at my bedside crying – they thought I might have meningitis – but I unable to speak, to tell her not to worry), she took matters into her own hands. We went to see a herbalist.

That was 2001, and natural remedies and ‘wellbeing’ weren’t really a thing yet. But we went and the doctor gave me a cocktail of herbal teas (primary ingredients being chamomile and fennel in one, peppermint in another), a foul brown powder (I actually have no idea what it was), and kefir, a sort of natural, bio-live yoghurt, I suppose. The doctor gave me a sachet, to which milk was added before keeping it in the fridge. These days you’d just buy a bio-live yoghurt or probiotic, and I discovered recently that you can buy kefir in the supermarket, next to the milk. The herbalist and his supplies cost my single mum a small fortune, but it worked: after a year of taking these remedies religiously, my Ulcerative Colitis was under control. From the age of 20/21, I could eat and drink whatever I liked. My incessant need for public toilets was broken – I could live life without first checking where the loos were located on every part of my journey.

Slowly, I became more confident. My health was back and I enjoyed my twenties as much as any other young woman, drinking and eating and laughing and having fun; I fell in love, I took up running (well, jogging), I travelled to America, Australia, Europe… life was good.

And, luckily, touch wood, it’s still good. Despite falling pregnant and giving birth, my UC didn’t flare up as many medical and online sources warned it would. Yes, I have to have a horrible, undignified colonoscopy every five years as I’m more at risk of bowel cancer, and sometimes I suffer with a little inflammation (which I’ve learned is usually stress related), but for the most part I’m a very healthy human being compared to fifteen years ago. My immune system seems a bit lower than those without UC – I get tired easily when I do too much, and my iron levels sometimes drop – but generally speaking I live a healthy life and I’m very, very lucky that I do. I try to eat well (I like chocolate and a glass of wine here and there), I exercise, I drink plenty of water, I drink herbal teas and take kefir and probiotics when I can, but other than that I don’t do much for my UC anymore. There seems to be very little rhyme or reason to the condition, which makes it tricky to understand, but Crohn’s and Colitis UK were a great support to me by way of information, providing a radar key, and a little information card to carry around with me for people who didn’t understand why I so desperately needed to use their toilet – this official card made me so much more confident in asking to use everyone’s and anyone’s toilet, and they even printed one in different languages for me when I travelled.

You might be surprised to know that Ulcerative Colitis affects almost 150,000 people in the UK (and that’s just UC – never mind its nastier big brother, Crohn’s Disease, or its annoying little sister, IBS), I wish I could take it away – or manage it – as it’s a nasty, limiting condition. I know first-hand how horrible life can be living with an inflammatory bowel disease (IBD), and though there is always something worse to suffer with, IBD is a condition that I wish very much didn’t affect quite as many people as it does. I hope that my UC doesn’t ever return as aggressively as it began, and though there is some evidence of it being hereditary I hope even more so that it bypasses my little boy.

For me, living with Ulcerative Colitis is no longer difficult. I know I’m lucky, but I’m also a huge advocate of natural health remedies and putting goodness into your body. Bacteria and the immune system are important factors when developing and managing UC so, if you have any symptoms of IBS, I would really recommend trying a natural route – I didn’t choose going to see a herbalist, it was a last resort to surgery (I was allergic to one ingredient that was in every drug used to treat Ulcerative Colitis.)  I’m actually glad that fate took me down that path because it may well be that it was exactly what my body needed. And now, here I am living UC-free. For now.

Images: Kris Miller