Ordinarily I’d encourage you to sit down with a coffee and cake to read a blog. Best not though. This one’s quite literally about shit.
Arse. Diarrhoea. Blood. Ulcers. Rectum. Enemas. Just some of the words you’ll have to put up with if you read on.
You see, I have a chronic condition called Ulcerative Colitis (UC). I never talk about it. Not even really to my family. I’m not sure how many of them actually know.
I just find it uncomfortable and embarrassing to speak about. I’m sure I’m not the only one.
Why blog about it then?
I’ve found I can be more open and honest when I write. I can share things I really do want to share, but just don’t have the courage to do in person.
So here goes. Here’s my story.
In the grand scheme of things, I have a mild form of UC. It’s called Ulcerative Proctitis. It basically means I have ulcers and inflammation in the lining of my rectum, but not the colon (or large bowel). Nice!
First things first, my experience is based on mild Inflammatory Bowel Disease (IBD). I can only imagine what people are going through if they suffer from total UC or Crohn’s.
How did it start?
I first noticed something wasn’t right when I was 22. I started shitting blood. Told you not to bother with coffee and cake.
According to research, Ulcerative Colitis often appears for the first time between the ages of 15 and 25. It affects men and women equally. How very PC of it.
At first I just thought, ‘ah, it’ll probably pass’ and tried to ignore it. But a few weeks later, it was hard to ignore. Unsurprisingly it was leaving me tired and in pain too.
So off to the docs I went. And then to the hospital for tests. The words ‘bowel’ and ‘cancer’ were mentioned. Shiiiit.
And when I say ‘tests’, this included a doctor shoving a camera up my arse (technical term is a ‘colonoscopy’ apparently). No wonder the NHS is free.
Good news, it wasn’t cancer. But it turns out I have ulcers in my rectum and the very bottom of my intestine. Not ideal. But could’ve been worse.
I was offered some enemas to get it under control. I didn’t know what an enema was. The doctor clarified that you administer it up your arse. I gave it a go, but it wasn’t for me. I opted for the oral alternative which cleared up the blood issue over a couple of weeks.
Right, now it’s ‘under control’, what’s the crack?
There’s no cure! Bollocks.
But why did I get it? We still don’t know what causes UC. Double bollocks.
Research has found it can be caused by a combination of factors including genetics and some unknown ‘triggers’ like diet and stress.
I’ll never know what caused my illness. All I will say is I got together with my now wife not long before…. (if you’re reading this Cassie, I’M JOKING)
Right, so there’s no cure and we don’t know what’s causing it. Marvellous. I was told I have a milder form of UC so I didn’t really want to rely on medication if I could help it.
Living with it
It never goes away. It affects everyone differently. Generally I feel like I manage it ok, but it’s not exactly ideal.
I wake up with stomach ache every morning. Every. Single. Day. It takes a couple of hours for me to function ‘normally’. It’s mad when I think about it. I’ve not had a day without stomach ache for about 9 years.
Every now and then I’ll have flare ups and go to the toilet A LOT. Whatever number you’re thinking of, it’s probably higher. And often I have no idea why it decided to flare up.
Work is hard. Commuting is harder. Travelling is the hardest. Flare ups leave me tired and out of sorts. I dread any situations where I might be sharing a room with someone.
Availability of toilets is always high on the priority list. By the way, if you find those public toilets that you have to pay for annoying, spare a thought for UC sufferers. It costs us a fortune.
My condition wasn’t really the driver, but actually leaving my ‘proper’ job last year and going freelance has had a big positive impact on my health. It’s given me more flexibility to work around my morning ‘routine’ and any flare ups. It’s reduced my stress levels which has definitely helped too.
I’m aware that I don’t do myself any favours sometimes. I drink more coffee than I should. I drink alcohol. I like spicy foods. Although I have cut out broccoli (avoiding high fibre, innit). I’m working on improving my diet and lifestyle. In the past I’ve tried extended periods booze-free and experimenting with food groups. But it didn’t make a huge difference and part of me thinks ‘fuck it’. I enjoy a glass of wine (ok, several) and a takeaway and, as long as I plan for it, I’ll just deal with it the next day. Everything in moderation.
My biggest regret is trying to do this alone. Not really telling anyone when it’s bad because I find it embarrassing. And I also worry my wife will make me get it checked out again. Did I mention how much I enjoyed the colonoscopy?
I have an ‘it’s fine’ mentality. Not long after being diagnosed and getting it under control I said it was fine and stopped going to the GP and hospital. I should probably get a check-up this year.
As I only have Proctitis and the affected area is limited, my risk of cancer is really no greater than the general population. The severity of my condition and flare ups is small in comparison to other UC and Crohn’s sufferers. I can only imagine the challenges they go through every day to live with their condition, both practically and emotionally. Extended stays in hospital. Big operations. Stoma bags. Increased risk of cancer.
Why have I written about this?
It’s not a sob story. I’m dealing with it. I’m fine with it. There’s that word again.
But Inflammatory Bowel Disease (IBD) in all its forms is a shitty chronic disease. It can be an embarrassing condition that disrupts life, relationships and work.
Ulcerative Colitis alone is estimated to affect about one in every 420 people in the UK.
I’ve tried to shed some light on the day-to-day impact that a mild form of the disease can have on someone. Hopefully this then gets you thinking about just how bad it must be for those who have it worse. It’s certainly made me think. You might work with them. Manage them. Socialise with them. Live with them.
If you’ve been suffering in silence or getting down about it, you should know that you’re not on your own and there’s support out there.
If you feel like something’s not right about your bowel movements, don’t ignore it. Get it checked out. If I had to endure the colonoscopy, you can too.
Supporting Crohn’s and Colitis UK
I set up my freelance business to make a difference to my life, but also hopefully to others in some small way. Over the last year I’ve donated and fundraised (thanks to family and friends) more than £1350 for local causes including Pendleside Hospice, Pendle Dogs In Need and the Pendle Reading Challenge. It’s something I’m really proud of. I want to continue supporting charities.
For the next 12 months my chosen charity is Crohn’s and Colitis UK. They fund research to improve patients’ quality of life and eventually find a cure. They also provide a range of support services for people who are affected by Crohn’s Disease or Ulcerative Colitis.
For every new subscription to my monthly email I’ll give a £1, in the form of an annual donation next April. I’ll cap it at 5% of pre-tax profits, just in case. Please subscribe to my mailing list and share it with others.
I’m planning to run a marathon in Spring 2020 to fundraise for Crohn’s and Colitis UK too. The exact marathon will be confirmed in due course. Wherever it is, I’ll make sure it’s hard work like Kielder Marathon last year.