World IBD Day 2022: 20 years of living with Ulcerative Colitis

It’s that time of the year again, when I start talking about my bowels and grossing everyone out! Today is World IBD Day (19th May) and this year marks my 20th year of living with Ulcerative Colitis, a form of Inflammatory Bowel Disease (IBD). Happy anniversary to me!

I was diagnosed with Ulcerative Colitis (UC) when I was 12 years old in February 2002. UC is a chronic illness where parts of the colon and rectum become inflamed. There is no known cause and no known cure for the condition. It can range from mild to severe. Fortunately, I am a mild case, but I rely on medication to keep my symptoms at a manageable level. Symptoms can vary, but when I’m experiencing a relapse – it’s an absolute bastard to deal with. If you’re squeamish, I suggest you don’t look at the list of symptoms below:

  • Severe diarrhoea (10-20 times in the space of 2 hours – sometimes lasts all day)
  • Frequent blood in your faeces (always a shocker for the retinas)
  • Intense pain in the lower abdomen, before, during and after opening your bowels
  • Having a persistently ‘uncertain’ feeling in your gut, so you can’t tell if you need the toilet or not
  • Feeling exhausted and weak
  • Gas and bloating (sexy)
  • Severe loss of appetite (which breaks my heart, dinner’s my favourite thing)
  • Weight loss

I’ve written about growing up with UC before, documenting medication & diet changes, steroid-induced depression, the sand-papery feel of your rectum after you’ve been back and forth to the toilet more times than you can count, and more positive things like being able to go to music festivals! Sometimes I read my blogs back and cringe at my excessive swearing, use of stupid gifs or my melodramatic tone, but hopefully there’s some informative stuff in there too.

I’m pleased to say that I am currently in remission, living symptom free after a nasty UC relapse back in November 2021. I’m taking 4 Mezavant tablets a day and receiving intravenous infusions of Infliximab every 8 weeks. I am about to transition from infusions to injections, which I can manage from home, using a device that’s like an epi-pen. It all sounds very simple when it’s typed out like that, but when I’m in the middle of a flare up and changing medications, UC makes my life a right fucking pain, and it’s often very embarrassing and quite isolating too.

I’ve tried to condense 20 years worth of my experience down to 5 points that shed some light on how difficult and how ridiculous it is trying to manage such an unpredictable illness. Take some time to read them below, and if you have any questions (or compliments) that you’d like to share with me, feel free to get in touch. 

Physical health & mental health go hand in hand

Anyone who lives with a chronic health condition will already know this. When I’m in good physical health, I generally enjoy much better mental health. When I relapse – often unexpectedly – I spiral into the following negative thought process: “I can’t cope with these symptoms everyday again. I can’t be arsed to explain what UC is to everyone again. I don’t want to go back on steroids. I hate everything and everyone.” I’ve been fortunate to have received mental health support over the last few years for my UC through the NHS, which has been a combination of CBT over the phone and also a reassurance from my doctors that I will only be prescribed Cortiment steroids, which fortunately, do not numb me into the paranoid hell that Prednisolone steroids have in the past. I also have a loving & supportive family who know exactly what to do when I’m struggling. 

It’s so important to address both the physical and mental side of a chronic illness. Even though you may not feel like talking, it’s a good idea to tell your workmates when you’re having a flare up. Tell the internet about it. Tell your friends, your cat, your bathroom mirror. Just start the conversation. It will be difficult at first – it’s taken me two decades to do it – but the more you talk about it, the more effective your coping mechanisms become and then you can start to feel in control again. 

There are few things in life more stressful than having to take a pot of your own excrement with you on public transport.

Providing a stool sample is a routine part of living with UC. Capturing, scooping and couriering a pot of your own poo across a city to hand it into a clinic for vital testing is definitely not good for your stress levels, though. The whole process is gross. There’s no two ways about it.

“Will this be the day that the person next to me on this packed tube falls and accidentally rips my bag off my shoulder, thus sending my pot of shit trundling down the train carriage for everyone to see? Will the pot launch itself out of my bag of its own volition the moment I catch the eye of the stranger standing opposite me? Will this journey on this packed cylinder of hell ever actually end?”

Just a handful of thoughts that float through my head on one of these perilous journeys. Solidarity to anyone who’s ever had to take a sample of bodily fluids into a public space before.

Medication changes can be good & bad

Being on and off Azathioprine tablets for 10+ years, switching from Prednisolone steroids to Cortiment steroids, graduating from intravenous biological infusions in hospital (Vedolizumab & Infliximab) to injecting myself at home – I’ve enjoyed an eclectic cocktail of drugs over the last 20 years trying to manage my UC symptoms. The most effective treatments have been Vedolizumab & Infliximab infusions, which I only started having in 2019. They have given me the most extensive and enjoyable periods of remission so far. 

Changing medication is always an unsettling experience – but when nothing else seems to be working, it’s often the only choice you have. As I’ve mentioned, Prednisolone steroids started sending me into a depression from the age of 18 onwards, so switching to Cortiment really was a game-changer for me. I dread to think of the amount of hours I’ve spent in and out of pharmacies and hospitals collecting these medicines, but it’s better to focus on what you do with the hours that you’re feeling healthy and well instead.

Some people still think women are elite beings who don’t have digestive systems

Maybe it’s the crushing pressure of existing in a patriarchal society, but from a young age I just accepted that women weren’t supposed to talk about anything that happens to their bodies. That’s probably why I shit blood for about three months at the age of 12 and didn’t tell a soul – I was too fucking embarassed to admit that I have the very human ability to punish the porcelain. I eventually told my Mum on Boxing Day 2002. I can still see her at the kitchen sink in my mind’s eye, as I stood there knowing I was about to share something I would rather implode over than actually ask for help.

I remember being on a night out in my early twenties, and hearing my friend’s boyfriend say “Girls just poo rose petals.” God knows why he was talking about crapping, and sure, it was a joke – but contrary to popular belief, women are human beings with digestive systems. Not only that, some women have digestive systems that don’t function normally, and I am one of those women.

Comments like the rose petal one and countless others have made living with UC since I was a teenage girl that extra bit stressful, that extra bit shameful, that extra bit embarrassing. I still remember one of my friends coming over to see me after my first ever colonoscopy test (aka camera up the arse) and asking with a terrified expression “is the camera still up there now?” – like I was a piece of human CCTV equipment. We were only 12 at the time, so fair play, it must have been a confusing concept to grasp, but it all factored into me hiding my UC at every possible opportunity, which was counterproductive to my overall well-being.

I’m almost 32 now, and I’m finally at a place in my life where I feel comfortable talking to people/the internet about my chronic illness. It took a long while to get here, so excuse me if I don’t hold my tongue, or my bowels, any longer.

The doctors & nurses who have treated me at The Royal London & Mile End Hospitals all deserve a medal

From the kind nurse who didn’t make me feel embarrassed when I farted really loudly in front of her after a routine colonoscopy test, to the various doctors, nurses & other staff who have helped me via appointments, emails, phone calls and blood tests – you have all made living with this illness so much easier. The NHS is such a precious and amazing resource. I wish I was a millionaire so that I could donate endless amounts of money to it, stop the Tories from trying to privatise it, and also take the whole Gastroenterology department on an all expenses paid exotic holiday to thank them for the exceptional work that they all do.

If you’re living with IBD and need more information or support, check out the Crohn’s & Colitis UK website (or drop me a line if you like x)

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