Looking after your own mental health is important for each and every person in order to allow you to live your life to the best of your ability. It is especially important for Crohn's patients, as there is a proven relationship between Crohn’s and Colitis and mental health – it’s called the Brain–Gut axis. There’s evidence of a direct two-way link between the gut and the brain. Anxiety or depression can lead to new gut symptoms. Equally, experiencing symptoms in your gut has been linked to developing new mental health issues. So it is crucial to look after yourself especially during a flare up as your body is so fragile.
During my first term at Uni, I was extremely stressed and did not take care of myself whatsoever, it was only when I was told by my doctor that my mental state had a bad physical impact and was possibly my trigger for my flare up, that I realised I needed to put my mental health first and start caring for myself.
These are the steps I take in order to stay positive:
1. Celebrate the little things
Currently there is no cure for Crohn's, so we can find it quite hard to celebrate improvement, with the knowledge that we will never ‘get better’. The best advice I have ever been given was by my dear Gracie’s mum, Karyn, she told me what they used to say to Grace was to ‘just do today and think about tomorrow when it comes’.
I take this advice with me every single day, and each evening sit myself down and be proud of myself for getting through another day, regardless of whether it was a good one or not, I did it and that's worth celebrating. This can be especially hard when you've started to flare up that day, or been given bad news by doctors about treatment not working, but being proud of the little victories in life can really help you to see how strong you are as a person.
2. Listen to music
Never underestimate the power of music, it’s an incredibly powerful tool that I use to get my emotions out and cheer myself up. Sometimes putting on Harry Styles' Fine Line Album and crying for an hour is just what you need to get all the pain of the day out, and sometimes dancing to Lizzo for 5 minutes is just what you need too! Music releases dopamine in the brain, a feel good chemical that boosts your mood. I have different playlists for different Crohn's moments, I have one that I listen to in hospital, one that I listen to before treatments and injections to hype myself up and my personal favourite is called ‘Calming Down Henry’.
I have been Prednisolone for 2 and a half months now, it is a very strong steroid that helps to reduce my inflammation during my worst flare ups, although it helps my body, it also causes a lot of side effects, many of which are to do with my mental state. I found my steroids give me hallucinogenic highs followed by depressive lows that cause me to get very down and agitated easily. I hated it so much because I am not a negative person, so it didn't feel like me whatsoever. So I decided to separate my steroid brain from myself by naming him Henry (no reason why I chose Henry, it was just the 1st name that came to mind). So now what I notice my mood changing I just put on my steroid playlist, it's very mellow music, which I find very helpful during a flare up, it calms me down and stops me from spiralling.
3. Open a window
When you're going through a flare up, you can't always get up to go for a walk because the pain is too bad or the fatigue is too strong. But being cooped up indoors can send your mental state off the rails sometimes. A bit of fresh air from the outdoors can do a world of good, whether that's standing outside for a minute or just opening the window to let in some air. I found it really helps me to feel like I am not constantly stuck indoors in a stuffy room.
4. Write down 3 good things every day
I started doing this years ago before I was diagnosed with Crohn's and I would urge everyone to try doing it! I have a notebook in which I write 3 good things from my day every evening, the book has ZERO negativity and stress, and it's filled with just happiness and memories. I began by writing one thing a day that was good and slowly worked up to 3, if you can write 1 good thing a day, no matter how terrible your day was, it shows you that the
day was worth it! Even if it's something small like, I got out of bed, or the sunset was pretty. Each month I read back all of my happiness and it helps to show me that even when you feel like life is going wrong and everything feels like it's falling apart, there will always be something to smile at by the end of the day.
5. Remind yourself that things will get better
The sentence ‘you won't always feel like this’ is very hard to hear when you have Crohn's, it is incurable disease, so in a way, I will always feel like this. Yes, I won't always be in a flare up, so partially things will get better. But I think Crohn’s fighters find it hard to believe. So I decided to take this phrase in a completely different way. When I think about things that make me feel good and happy, I think of going for walks on the beach with my friends, going on holiday with my family, date night with my boyfriend. So when people tell me things are going to get better, I think of doing those things, because they will happen!
Crohn's does not rule my life, it does sometimes overtake it from time to time, but it doesn't stop me from enjoying the things I used to. One day your treatment may still not work, but you can see your friends and do the things you love, so yes, things will get better regardless of having Crohn's!
6. Calm your breathing
It is easy to panic and spiral out of control during a flare up, when the pain doesn't seem to ease and medication doesn't seem to work, it can make you feel helpless and often leads to either, a really short sharp breathing pattern or simply not breathing for long spans of time. I try to acknowledge when times get tough and notice my breathing pattern. Both 4-7-8 breathing techniques and meditation on the Calm App or on YouTube helps to calm me down and not spiral. Your body is already under so much stress during a flare up, so by controlling the things that you have the ability to control, you are giving your body the best chance to recover and rest.
7. Distract yourself by creating projects or delving into work or school
When you have Crohn's, it is easy to just feel like your only purpose in life is to take medication and go to hospital appointments. All Chronic Illnesses feel like a job sometimes because it's at the forefront of your mind constantly. So, I find it useful to create projects to distract yourself with, I love to scrapbook and I think anything creative can allow your brain to thrive in ways that have nothing to do with Crohn's. Sometimes delving into your school work or job can help you to enjoy life again and feel like you're not just the sick kid, but do not pressure yourself to always be doing something. The best thing to do sometimes to just rest and allow your body to try and recover from the flare.
8. Talk to people about your feelings
It may seem like an obvious thing to do, but having a few people you can be completely open and honest with about your struggles during a flare up can help you feel like you are not alone. Especially when you are hospitalised for a flare up, like I was back in December, it is easy to push everyone away and just want to hide. I found my hospitalisation especially hard because I wasn't allowed visitors and I was on a ward of Bowel patients that were all ALOT older than me, I felt incredibly isolated and lonely. At the start I refused to call my Mum and Tom because I was just so upset but when I realised that they just wanted to look after me, and that it's not admitting defeat to accept help, I started chatting to them about my emotions. It really helps, your friends aren't there to judge, they're just there to listen and care. If you don't want advice and just want someone to rant to, tell them that! They will understand.
9. Be kind to yourself
If you have Crohn's, it is easy to be too tough on yourself, but it is essential that you take a step back and remember, you have an incurable autoimmune disease, a Chronic illness, an invisible Battle that's unpredictable and scary!! Give yourself a break, you are so strong to be coping with what you have. IBD is one of the hardest diseases to live with day to day so just be proud of yourself!
I have struggled with guilt, feeling like a burden, feeling like I am not doing enough, but sometimes I have to take a step back and give myself credit, I managed to go from being essentially unresponsive in a hospital bed, relying on a drip to keep me alive to being at home, doing online Uni and eating again, in a matter on weeks. Admittedly right now I am pretty ill again, but that doesn't invalidate what I managed to achieve in January!
10. If you need to get help ASK! Don't be afraid.
The strongest thing you can do is to admit you're struggling, there is so much help out there for Crohn's patients. Do not suffer in silence.
Crohn’s and Colitis UK Helpline: 0300 222 5700
Acceptance and Commitment Therapy (ACT): is a talking therapy that starts by accepting that Crohn’s or Colitis won’t go away.
Antidepressant medicines: Around 3 out of 10 people with Crohn’s and Colitis take them to manage depression or anxiety
CALM: is the Campaign Against Living Miserably. A charity providing a mental health helpline and webchat. 0800 58 58 58 (daily, 5pm to midnight)
Everyone struggles with Mental Health battles and it is not something that you should do alone. I hope theses tips can help both Crohn's and non-Crohn's patients with looking after themselves!
Stay Positive and keep smiling!
Luce x
