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)

 

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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 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 the 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 (bit of a shocker for the retinas, I must admit)
  • 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)

I find it really hard to explain the symptoms effectively; so I’ll also use an analogy I think everyone can relate to. Have you ever experienced ‘the shits’ on a holiday abroad? If so, can you remember how you thought your life was going to fall out of your arsehole, within a matter of moments; and you had no control whatsoever. I imagine your symptoms went away after a week or so; you laughed it off, and went about your normal life again. Well, imagine living with those symptoms on a daily basis, but with ten times the urgency, ten times the pain, and ten times the lack of control; Welcome to Ulcerative Colitis!

When I first became ill with UC at twelve years old; 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. 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 gorging on doughnuts when I eventually felt better.

Through medication (a combination of Azathioprine, Mezavant, Hydrocortisone foam and Salofalk foam), sheer determination, and the support of my family and The Royal London Hospital; I have managed to live a pretty brilliant life without Ulcerative Colitis getting in the way. 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 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 btw; 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 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 at times, 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 ‘heaviness’ in my head, which never goes away, and I feel compelled to sleep for eternity. On a vain/superficial level, my face puffs up; 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.

So, with regards to going to Music Festivals; whether I’m ill, or symptom-free, I feel the true experience would be marred for me if I was on steroids. I know people take all kinds of drugs at Festivals, and it’s not a big deal; but I can’t function properly on something that’s prescribed to me by a GP. Plus, there’s the possibility of a struggle with security when I turn up to the gates with a bag full of pills, and foams (I am a legal drugs FIEND).

This has been a hefty piece of writing, so I’ll bring it to a close. Ulcerative Colitis is the shitty reason (literally) 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 (for now.)

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