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)

Living with Ulcerative Colitis & How it Affects my Mental Health

It’s the 19th of May today, which marks the end of Mental Health Awareness Week in the UK and the beginning of World IBD Day. I’ve decided to share this blog because I’ve lived with Ulcerative Colitis (a form of Inflammatory Bowel Disease) for 16 years and, as with most chronic illnesses, my mental health often takes a battering because of it.

The crossover in dates gives me the perfect opportunity to talk about a depressive episode I suffered in 2018 whilst taking a course of Prednisolone steroids to treat my Ulcerative Colitis (UC), and  the way I approached my most recent UC relapse in January 2019 whilst taking a “new” type of steroid called Cortiment.

Firstly though, I’d like to focus on something positive. I’m happy to say my UC is currently in remission and I have minimal symptoms. This is most likely due to me starting a new treatment called Vedolizumab, which is a drip infusion that I go in to hospital for every two months. I am also taking a break from my 100mg daily dose of Azathioprine (an immunosuppressive drug) because my white blood count is too low. Whilst this could lead to a relapse, I can’t deny that my mood has generally improved, and the feeling of “heaviness” I sometimes experience in my head on this drug has become much lighter.

Since I was a teenager, I have always turned to the pages in my diary to make sense of what I’ve felt, but when I began a course of Prednisolone to treat my UC in March last year, I couldn’t face recording how awful it was. I’ve actively avoided writing about it because I’ve been concentrating on feeling better – but part of getting better (for me, at least) is looking back at what I’ve gone through, and feeling reassured that I’ve survived it.

So, I got ill again in February 2018. Really ill. My worst relapse in the last 3 years. Relentless gut aches and shit and blood and diarrhea: all the glorious symptoms of IBD. I was in pain all day. I had pain before, during, and after opening my bowels (which was up to 10 times a day) and my rectum took such a hammering that if it had tear ducts, I think it would’ve wept on my behalf.

I practically begged the doctors for Prednisolone because I knew nothing else would work, and despite knowing it would send me in to a depressive state – or “steroid haze” as I like to call it. I popped some Prednisolone pills and waited for the awful side affects to kick in. Within 3 days my IBD symptoms improved, but my mental health declined. I became more heavy-headed, was in a constant low mood, and felt overwhelmingly tearful, paranoid and anxious. I have blogged about the severity of the Prednisolone symptoms before, so read here if you’d like a bit more insight.

As always though, most people will not have noticed this happened to me. I made it in to work almost every day, I still went to gigs, I socialised, I kept going. The idea of sitting in my room all day with my own horrifically negative thoughts was something I absolutely could not entertain. I count myself lucky that I was able to get out of bed and keep going, even if I did it with the maximum amount of unease and sadness.

I had to cart pots of my own shit around (samples that needed testing, not just for some weird form of fun) delivering them to the right hospital department, I had countless blood tests, and visited the pharmacy on multiple occasions because they didn’t have enough Prednisolone pills initially. All this, whilst pretending to be absolutely-fucking-fine because I did not want any anyone to know how unwell I felt. I have been trying to get to the bottom of why I try to hide these really important things from people, and the only justification I have is that I like to be seen as strong, dependable, and in control – when you have IBD it robs you of these qualities.

Whilst all of this was going on, I also happened to be dating someone who was kind, open-minded, and patient whilst trying to understand what was going on with me physically and emotionally. I kept blindly insisting I was “fine” because I wanted to convince myself, and him, that I was. But, it turns out, words aren’t a cure for chronic illness or steroid hazes – because if they were, his reassurances would’ve sorted me out in no time. Looking back, I also think I managed to hide a lot of this from him even though I was trying to be honest about it, so perhaps he was genuinely unaware of how unwell I was.

I do have some good news though!

This particular relapse made me realise that I’ve been living in denial about the impact UC has on my mental health for years. This prompted me to seek help. I had in depth discussions with my IBD doctors about the affect Prednisolone has on my mood, and they openly apologised to me for not acknowledging the severity of the side effects earlier in my life (particularly when I was 18). We  agreed that next time I suffered a relapse, I could try a “new” steroid called Cortiment. Cortiment is engineered to target the gut only, unlike Prednisolone which affects the whole body – no nasty mental health side affects!

They also booked me in to talk their IBD mental health specialist. I could be bitter and complain that “they should’ve done this earlier” because I needed this support when I was 18, but in reality their job is to treat the physical symptoms of my IBD (which they always have), and after living with the illness for 16 years I have realised that it’s as much a learning curve for my (incredible) team of doctors as it is for me. The impact IBD has on mental health is something that’s only starting to be addressed now, by patients their doctors and the NHS as a whole.

Whilst I was waiting for this specialist appointment to come through, I was fortunate enough to have the funds to start visiting a private counsellor. This is one of the best decisions I have ever made. It may sound obvious, but I had no idea that simply talking about how much of a struggle it is to live with IBD (and how it will knock me down unexpectedly in the future) would help. I’d never learned to talk about it. Counselling allowed me to sit with those feelings of grief and shame and realise that telling people what’s wrong, and asking for help is key to my recovery, both physically and mentally.

So, in January 2019 I had another UC relapse. Again, it was brutal. My New Years Day started at 6:30am with me trapped in the bathroom, unable to leave the toilet for 2 hours. I was almost retching because my abdominal pain was so bad. I wanted to cry (and I probably did later that day), but I made the proactive decision to get in touch with my doctors and get on a course of Cortiment steroids. I also told work about my symptoms and asked for some flexibility with start times and hospital appointments, and I told my (then) boyfriend that I wouldn’t be able to stay over at his place until my symptoms calmed down. I couldn’t control what was happening to my body, but I could control how I dealt with it.

Some more good news: Cortiment steroids worked and my mental health was unaffected! They took a fortnight to kick in (much slower than Prednisolone) but once they were properly in my system, my symptoms reduced and I made my way in to remission. I continued with my counselling, and I am pleased to say it was the smoothest relapse I’ve ever had, because I was honest with myself and with everyone else around me about the limitations UC puts on me. I stopped counselling at the end of January this year, and I feel prepared to face any future relapse with the same outlook.

I should also say that my very good friend Katie was diagnosed with Crohn’s Disease (a sister illness to UC) during the time between my two relapses, and whilst I wish she never had to hear that diagnosis come out of a doctor’s mouth – I cannot tell you how unbelievably vital her own experiences of IBD have been to me. Our WhatsApp conversations now consist of a mixture of messages like “Can’t wait for dinner and drinks tonight!” and “I’m so bloated and gassy right now, plus I shit blood this morning lolzzzz”. We have been coaching each other through endoscopy tests and medication adjustments for the last few months and have helped each other to accept that living with IBD is shit – but we can live with it, and it’s a lot easier if we can live through it together. We’re planning to start a Podcast about it actually, which will quite literally be full of shits and giggles.

So many people are struggling with a chronic illness and so many people have similar experiences to mine, and yet, it still takes me an essay like this to feel okay about it all. And, despite ignoring the need last year, I do need to write about it when it all flares up again. Shit things happen, and sometimes just admitting that makes everything a whole lot easier.

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)