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)

 

My Open University Experience

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What do you do when you hit eighteen and go to university to study Drama & Literature, and realise you’ve made a whacking-great mistake? Well, I’ll tell you.

You spend a solid month in your campus bedroom, panicking in silence. To distract yourself from the anxiety, you listen to Kings of Leon’s ‘Sex on Fire’ and spin in circles on your swivel chair. You occasionally venture outside, wandering to Tescos to buy rotisserie chicken (and DVDs, so many DVDS). You try to ignore the state you’re in, but feel like imploding when anyone asks you ‘How’s uni going!?’ You let the panic build, and build, until you finally realise; I have to get out. I have to get out – NOW’.

You eventually find the courage to tell your parents this. You tell your Mum first (she’s just forked out for a celebratory Pizza Hut on her first visit to see you). She’s shocked, concerned, and goes home to tell your Dad. He picks you up from the train station later that night, with half the contents of your bedroom packed in to your bags. You insist to them both you’ll do absolutely anything if they let you quit university and move back home.

They try to talk you out of quitting, but eventually oblige you because they love you and they’re concerned your skin now has the texture of a rotisserie chicken. You break the news to friends and teachers and almost everyone thinks you’ve made a life-altering mistake – but you know you haven’t – regardless of how awful it feels (and how chicken-like your skin has become).

The above is what happened when I quit university in 2008. I came home with a sense of simultaneous relief and dread to reassess my options. I was an A-grade Drama and English student at my secondary school, as well as prefect and Head Girl (a title I wish I’d never accepted). When the news spread that I couldn’t hack university, it was an absolute shocker. Clever Kate had failed. Oh dear…

I was out of work for three months, so I hit-up the job centre for pennies. I was pretty distraught, I felt like I was the only teenager on earth who didn’t enjoy university. I didn’t know what to do. Fortunately, I found a part-time job after three months of panic, got off benefits, and realised I still had that burning desire to learn, to know more. I started to consider higher education again, but knew I couldn’t handle another campus university. I looked to The Open University for inspiration and that’s exactly what I found.

I discovered a network of like-minded students and skilled tutors whose united goal was to achieve educational and personal success. I began studying English Literature with The Open University part-time in 2009, and last week I finished my final module. My first act as a deadline-free adult was to play David Bowie’s ‘Heroes’, full blast, prancing round my bedroom. For the entirety of the song I felt infinite. When the music stopped, I wanted to cry. Six years of my life, over.

I began reminiscing with an intensity that would shame Uncle Albert from Only Fools and Horses. I remembered how hard it was to convince people that The Open University was a real university, and that I was a legitimate student (difficult to do that when you’re reading/crying over Beatrix Potter’s Peter Rabbit as part of your children’s literature course). Friends and family made jokes about my ‘fake’ degree, but I took it all in my stride, because I was running this educational marathon for a reason. I was studying the same books as my friends who were studying literature on campus universities, and like all other students I had essays to write, deadlines to meet and exams to stress about. I will graduate with a BA Hons degree in English Literature in September. That’s right: a real degree.

My degree took six years instead of the traditional three because I opted to study part-time. This meant I could gain financial support, so I avoided accruing hefty student debts. I kept my part-time job, and this funded all of my weekends at The Pink Toothbrush (90% of the weekends in a year), and several trips down to Brighton to see my friend John, who was studying at Sussex University. I’ve managed to squeeze a lot of living and laughing in between my deadlines and work schedule, but there were times when I genuinely thought I might implode from the stress of it all.

I was not prepared for the loneliness of being an Open University Student. My ‘days off’ were actually days on the books, on the laptop, trying to cram in as much information as my little walnut brain could take. There were days when I’d stare blankly at my laptop screen, silently willing my grey matter in to action. It wouldn’t respond and the frustration was ridiculous. I’d panic, talk in a gibberish rage to my Mum, then run upstairs to cry for a solid thirty minutes. I’d snot out all the fear, have a pep talk with my reflection, then return to the laptop to write.

Fortunately, encouraging emails from tutors and student forums bursting with similar ‘I CAN’T DO IT, HELP ME!’ messages reassured me that it was normal to feel paralised and lonely when deadlines approached. I also discovered that power naps were the ultimate ally on deadline days, and this made the crying/snot less frequent.

Anyway, enough complaining: now for the praise!

I have always relied on literature to help me process things. I cite Roald Dahl’s Matilda as one of my earliest and closest friends (I’ll allow a 10 second laughing break here). Matilda/Dahl knew that the mind was an immensely powerful instrument that needs to be tuned and re-tuned with all kinds of new information. It’s this desire to devour the written word which made me choose The Open University and why, despite my initial traumatic entry into higher education, I never gave up.

Regardless of what was happening at work or in my personal life, I always felt that I could hit the books and everything would be fine. The quiet, inner knowledge that I was consistently working towards something kept me going for six strong years. I knew the literature I read was improving me, whether academically or personally. People who insist they ‘don’t read’ don’t realise what they’re missing. I’m all for living in the real world and putting yourself in the way of experience, but vicarious experiences are equally as valid. I’m glad I have travelled through the minds of some of the most intelligent writers in the English language in the company of The Open University. (If you think I’m nuts, a recent study has proved readers of fiction tend to have higher empathy levels aka are really quite nice, lovely people)

It was this unfathomable self-belief that made me set the following target for myself: in my last two years of studying, I promised I would score a minimum of 70% on all assignments. In between the working, panicking, and being hung-over I achieved more than this target, scoring between 80-85% on my essays. Sometimes I had to ask for extensions (ill health played a major role in this), and sometimes I had to sit up until the wee hours, then wake up at 5am before an 8 hour day at work to meet the seemingly unachievable deadline. Now, all of that sweating and studying is over, and I’m strangely sad that the student chapter of my life has come to a close (but let’s face it, it’s about time). It’s time to set myself new targets, preferably ones that don’t have deadlines too.

If you find yourself in the same situation I did when I first considered university, or if you feel you’re stuck and unable to change something; please don’t panic. Please don’t think you’ve ruined your life, and for the love of God: PLEASE DON’T WASTE ALL OF YOUR SAVINGS ON ROTISSERIE CHICKENS. Stand up, take a deep breath, accept it’s not working and look at The Open University’s website. If you’re hesitant about starting, my advice is to pick a module that appeals to you, and go for it.

The Open University is D.I.Y for the mind. With the tools they give you, you’ll be able to build something useful, sustainable and concrete. If you want it, you can have it, all you have to do is apply yourself and keep going, regardless of how hard it gets. You can do it, and you won’t regret trying.

(Image courtesy of: http://25.media.tumblr.com/tumblr_mbwjua7zXz1qi86x2o2_500.gif)

19th May – World IBD Day 2015

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Bowels are important – we all know that – but today is World IBD Day; so they’re extra important for the next 24 hours. This day has been set aside on the calendar to raise awareness of Irritable Bowel Diseases, particularly the two most common in the UK: Crohn’s & Ulcerative Colitis.

I was diagnosed with mild Ulcerative Colitis when I was 12. I’ve been quietly living with it for 13 years and have rarely spoken about the hospital appointments, blood tests, endoscopies, and medication I endure in order to stay well. I’ve always struggled with telling people about the illness, but after reading the stories from other sufferers on the Crohn’s & Colitis Facebook page, I realised I am blessed to only suffer the occasional relapse; some people are slaves to this cruel condition.

Reading these stories, however, gave me the courage I needed to say ‘Come on Bob, it’s not that bad, don’t let it hold you back! – and that’s the revelation I’ve decided to share with you today, on World IBD Day.

I wrote a blog about how I’ve let Ulcerative Colitis dictate my decisions not to go to music festivals, but this year, I’ve decided to GO FOR IT. I’m off to Isle of Wight Festival in June and then to Bestival in September. Me & my bowels are being brave – and I don’t give a s**t about anything else.

The Real Reason I don’t go to Music Festivals…

Music Festivals are the highlight of the year for many people. Glastonbury, Reading, and Bestival, are some of the many events dedicated to good music and a good time. My friends attend at least one of these festivals every year, and they always extend the invitation to me.

They promise me a week in an invented wilderness, listening to my favourite bands, dancing like a madman in a field, high on life/summer/alcohol. For someone like me, who loves being at the front for live gigs, is very fond of vodka-sauce and a tour-de-force on the dance floor – it sounds like a dream. People look genuinely confused when I tell them I ‘don’t really do Festivals’, then don’t follow it up with an explanation.

Well, I am about to explain what turns my festival dream in to a nightmare.

I was diagnosed with Ulcerative Colitis (UC) when I was twelve years old. I don’t talk about it very often, because a) I don’t want to, b) I still don’t know how to effectively explain the condition to people, and c) I feel that patriarchal society doesn’t like it when I, a young woman, have to admit to being human and having bowel movements.

Ulcerative Colitis is a form of Irritable Bowel Disease (IBD). It is a chronic illness where 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 daily medication to keep my symptoms at a manageable level. Symptoms can vary, but when I’m experiencing a relapse – it’s an absolute bastard (accurate use of medical terminology there.) If you’re squeamish, I suggest you don’t look at the list of symptoms below:

  • Severe diarrhoea (up to twenty times in the space of 2 hours – sometimes lasts all day)
  • Blood in your faeces
  • Intense pain in the lower abdomen, before, during and after the bouts of diarrhoea
  • Having a persistently ‘uncertain’ feeling in your gut, so you can’t tell if you need the toilet or not
  • Feeling exhausted and weak
  • Severe loss of appetite (which breaks my heart, dinner’s my favourite thing)

When I first became ill with UC I ended up weighing just 5 stone. I’m not exaggerating when I say my parents thought I was dying. I was refusing to eat because I felt so unwell and they had to have several strong words with my local GP before I even got a hospital appointment. My GP initially mis-diagnosed all of my symptoms as hemorrhoids. I missed almost a year of school because I was physically unable to leave the house. It was a rough time, but I don’t really remember too much of it because I was young, and the doctors spoke to my parents about the serious stuff. I just remember stuffing my face with doughnuts when I eventually felt better.

Through medication (a combination of Azathioprine, Mezavant, Hydrocortisone foam and Salofalk foam enemas), sheer determination, and the support of my family and The Royal London Hospital; I have managed to live a pretty brilliant life without UC ruining things. I can do pretty much everything everyone else does, mainly because I’ve got some sweet drugs (all legal) that keep me on track. However, even when things are going well with my condition, I still hesitate about staying over at friends houses, going away on holiday and going to Music Festivals.

Sure, I might hit lucky and be symptom free on the weekend of Reading/Glastonbury, but I won’t know that until the time has arrived, so spending hundreds of pounds on a ticket months in advance, seems like a huge risk. When I get there, there’s also the camping situation, and of course…the shared toilet facilities. My friends have explained that usually there won’t be huge queues for the toilets – but what if there’s a queue on the day where all hell is breaking loose in my bowel? Shall I just do as the bears do and shit in the woods? I don’t know if I’m cut out for that (no judgement if you’ve ever done that, when you gotta go, you gotta go!) Also, the pain is pretty unbearable at times, so I really don’t want to be surrounded by hundreds of people when my insides feel like they’re full of lava. If I’m feeling ill I need privacy, and I’m unlikely to get that if I suddenly feel unwell in the middle of a mosh pit.

It’s not just the physical symptoms though. As with all long-term health conditions, the emotional symptoms are also difficult to deal with. If I suffer a relapse, I am usually prescribed a two month course of prednisolone steroids. Steroids are a wonder drug in the sense that they solve almost all of my UC symptoms. Emotionally, however, steroids tend to do a number on me. I have never been officially diagnosed with depression, but when I am on steroids, I enter in to a depressive state that is very hard to deal with. I also find my hands shake for no reason and I feel anxious about the most insignificant of things. I become conscious of a persistent ‘heaviness’ in my head and I feel compelled to sleep for eternity. On a vain/superficial level, my face puffs up too, which, on top of everything else, makes me self conscious and insecure.

Ultimately, steroids are both a friend and a foe to me. Fortunately, I’ve got a brilliant family who know how to help me out when I feel strung out, and once I’ve finished the prescribed course most of these steroid-induced symptoms go away. If you have been officially diagnosed with depression, please don’t take offense at my self-diagnosis. I believe that my depressive symptoms are a by-product of my physical illness, which makes it easier to deal with. People who suffer with severe depression may not have the benefits of this perspective and I empathise intensely with anyone who has been through/is going through periods of depression.

This has been a hefty piece of writing, so I’ll bring it to a close. Ulcerative Colitis is the shitty reason why I don’t go to Festivals. It’s nothing to do with being a camping snob, or being a boring bastard, it’s all to do with not being able to predict whether or not I will experience a relapse or symptoms on the weekend of the festival. It’s too big a risk, financially and physically. Some of you may be wondering: ‘Why is she sharing this on the internet? It’s a bit personal/gross/unnecessary.’ I have no real reason, I just wanted to talk about it, on the off-chance that it might help someone who also has Ulcerative Colitis. The internet’s a big place; there’s always someone to reach out to!

DISCLAIMER: I want to differentiate between Irritable Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS). Both are complicated conditions, but IBD is generally more severe and much more difficult to control than IBS, which can often be controlled by changes in lifestyle or diet. Changes like this can improve symptoms for sufferers of IBD, but they do not eradicate all symptoms, or cure the disease – the disease is permanent.

You can donate to IBD research charities here, or just do some more investigating here. Thanks for reading.