My experience of IBD

Today is World IBD Day – to raise awareness of Crohn’s disease and Ulcerative Colitis.  

Both are autoimmune diseases affecting the digestive tract, with Crohn’s affecting the whole thing and UC affecting the large bowel and rectum. 1 in 123 people in the UK live with Crohn’s or Colitis.  

Here’s the call to action, near the start before people stop reading: If you notice blood in your poo, get it checked out by a doctor. This week. Ring them now and see if you can get an appointment. 

Seems like a simple thing, right? Speaking for bloke-kind: no. We’re shit at getting ourselves checked out. We notice something and ignore it. Then we rationalise that the GP is probably busy with actual sick people.  

Get it checked out. There’s lots of things it can be, and they’re all treatable. 

UC can be mild to severe. Some people live with the mild version for years, or possibly forever, but I got the VIP fast-track experience: I was diagnosed in 2019 and had two flare-ups. The second, in 2021, was unresponsive to steroids. I was admitted to hospital to see if mainlining the steroids would be better. Then they added intravenous cyclosporin into the mix too (the stuff they give to transplant patients to stop the body rejecting the pig’s heart or whatever), various things like iron I think, as well as transfusing a couple of units of blood. 

Having the surgeon come and see you and say ‘we’re probably going to have to remove your colon. That involves forming a stoma and pooing into a bag instead of out of your bumhole for the rest of your life’ is surreal. I refused to accept it. My parents gave me that colon, I didn't want to give it up! I didn’t want to have a stoma; those are for old people!  

People I know suggested stupid things like mindfulness and positivity. That wasn’t going to work. The only emotion I can summon in abundance is spite. Perhaps it’s possible to get better out of spite..? I tried reasoning with my own body. I tried threatening it. Come on, you piece of shit.. If you keep this up they’re going to cut us open.  

Then a few days passed. I was still pooing roughly 20 times a day. None of the treatments were doing anything. None of the threats worked either. The surgeon came back to see me: “Listen - we either do this surgery or we’re sending you home to die.” 

So the surgery went well, and some days later when the knock-out drugs had fully worn off I already knew it had done the job. I felt weak, couldn’t walk across the room without help and couldn’t lift anything heavier than my own arm, but I knew the effects of the disease had vanished. It took weeks to recover but I was a bit stronger every day.  

I’m now stronger than I’ve ever been. Really. One thing I can see clear as day in retrospect is that when you’re unwell for a while you can’t tell how unwell you are. Who knows how long I was really suffering before it was diagnosed. 

Does having a stoma affect my life? Honestly, not really. At the start it was weird, in a David Cronenberg style body horror sort of way. I thought I’d have to buy a big squashy Mercedes to drive my poor frail body about in; walk with a stick and complain about young people a lot more. Then I adjusted. How weird is it really? Everyone poos, and they all clean their bumhole. We just don’t talk about it. We don’t talk about stomas either, but 1 in 500 in the UK have one. Probably more people you know have one than you realise. 

I get to do things most people can’t: I can poo standing up! I can eat spicy food and not have to relive it the next morning! I can ring a special number and get a re-up couriered to me for free that I get to imagine is a g-pack of street ready narcotics like I’m in The Wire! (it’s really just stoma bags and stuff). The large intestine is there to absorb water and salt from your poo, so medically all I need to do differently is drink more water and eat more salt.  

But the psychological adjustment... If you’re going through this, you’ll have seen that there’s all sorts of ‘motivational’ stuff out there to support you. They're all about people who run marathons now, or have become super-fit motivational yoga influencers or something. 

None of them spoke to me - an essentially lazy person who has never really been physically fit. Am I supposed to suddenly get all swole, or good at running, so people can say “yeah it’s a shame he’s got a stoma.. But at least he’s good at cycling” or something...? The people the medical supply companies feature in their support videos are sometimes a bit odd as well, e.g. “Oh yes I spiralled into depression and alcoholism after my surgery but I’m fine now!”. What on earth guys!? Pick someone better as a spokesperson! 

Then I realised: 

- You don’t have to become a super-athlete in spite of your disability.  

- This doesn’t define you. 

- Most people either won’t notice or will. not. care. 

It’s fine to feel normal as a somewhat lazy middle aged person who likes doing a bit of DIY. Before I went to hospital, I was working on putting new subfloor down in my attic – those 2.4m x 1.2m 18mm chipboard boards. I only got half way. The thought while I was recovering that I would have to one day lift those 20 kilo awkward bastards seemed impossible. I’ve finished it now though, and it was fine. Oh, and in the last couple of weeks I’ve been up the scaffolding outside to fit new soffits and drainpipes, and Screwfix have just upgraded my DIY account to a trade account without me asking. 

Is this supposed to sound impressive? No. But who cares. It’s a normal life for a bloke in his 40s.  

If you’re looking down the barrel of surgery for Crohn’s or Colitis, are worried and need someone to vent at – please reach out. If you don’t want to do that - go and watch the videos by Hannah Witton on YouTube about her experiences with UC. Watching her videos is what put everything into perspective for me. 

Everyone else – remember to book that appointment to get your bum checked out.