25 things I now know…

So I’m 25 this month and thought I might share some of the little anecdotes, and snippets of information I have gathered in my tiny lil brain by the age 25. You might find them useful, you may not! So, here we are! 25 things I have learnt about living with Crohns Disease…

1. You will very, very quickly become comfortable with talking to almost anyone about your arse hole. 

2. You will easily go through a roll of toilet paper a day. 

3. The pain of a colonoscopy with no sedation is not worth it. Get the sedation. Every time.

4. Your bowel is much closer to your bladder than you realised. Which will often result in you having a UTI alongside your flare. 🖕🏻 

5. RADAR keys are the dogs bollocks. 

6. Constipated? Get those knees elevated girl. 


8. When your scars heal, it will feel like tiny little people are living in your skin and constantly  dancing a samba whilst wearing sharpened stilettos. 

9. You will shit yourself. Maybe even a few times.

10. You can fart out of a fistula! Who knew?!

11. Having an ileostomy bag isn’t all that awful.

12. The nightmares you will have on PRED, however, will be.

13. Moon face is a real problem.

14. The noise your stomach can make will be loud enough to wake you up.

15. Putting an icecube up your bum is never a good idea.

16. If your meds make your hair fall out? Match your hair colour to your eyebrow palette and colour in the bald bits.

17. Humira injections are not painful at all. Trust me.

18. Hearing the words “sharp scratch” will very quickly become old news. No fear here.

19. Fragmin is a little bitch.

20. Nurses are superheroes .

21. In fact most people you will come across in the NHS are bloody fantastic.

22. You will fart like you’ve never farted before.

23. People might not understand. Or want to understand and that’s perfectly okay.

24. CCUK is great, and so are their volunteers. If you’re struggling, phone them – they will listen.

25. The pain can feel all consuming but you’ll get there. Pain is temporary, work with your gastro team to find a solution, because there is one out there.

So there we have it. 25 things I’ve learnt by the age of 25. They might not be true for you, but they were all new information for me at one point. What have you learned from your illness? Chuck a comment below. I’d love to know!
– R. x


Forget them.

One thing I know, having lived with Crohn’s disease (diagnosed or not) is that you can’t expect everyone to ‘get’ it. The same can be said for any chronic illness. Some will be incredibly supportive; they will call or text, or visit you in hospital. You will catch up with them and feel genuine kindness and empathy. Some will show compassion and a want to understand. They will offer support and a listening ear, even if it’s once every couple of months. These interactions are just as important. Don’t think that because you haven’t spoken to them in a while that it means any less, because they get it, they understand what you are going through and they care. Others; not so much. You will meet the ignorant, the rude and the petty.  These are the individuals that have  the ability to make you feel isolated and wrong for having your illness. They will question your illness. They will question your symptoms. They will question your actions. They will nod sweetly and wish you well, all whilst mentally preparing their version of events. Forget them. You will come across them your entire life but all you need to remember; is to forget them. Trying to make them understand won’t ever work because they’ve already made their mind up. Trying to get them to listen won’t work because they’re deaf to anything other than shallow socialisation. They don’t want to know about you or your problems, unless it benefits them in some way and that’s fine. Just forget them. You have you to focus on. Right now, surround yourself with those people we talked about at the beginning. Surround yourself with the people that believe you without question, that listen without judgement and that empathise without sympathy. You are doing great and for those that don’t see it; forget them. 

An open letter to a nurse…

Dear Nurse,

Thank you. For you are the one that calmed me down when things felt overwhelming. Thank you. For you are the one that explained procedures when there was little understanding. Thank you. For you are the one that showed compassion, empathy and kindness. For all the late nights, missed breaks and over run appointments, thank you. For taking my blood as gently as you can, for explaining each drug and it’s side effects, for removing that stitch just a little slower than you needed to just because you understood it would hurt if you didn’t, thank you. For dropping by the house because you worried you hadn’t given me enough dressings, Thank you. Without you I might have felt abandoned, unsure or terrified but you didn’t allow that to happen. You make this tolerable. You make this manageable. So from the bottom of my heart, Thank you.   

Dream or reality?

I found a few poems this week, poems that I had written whilst I was very ill. It was oddly cathartic reading over them and realising how far I’ve come, it’s only just dawning on me how close I was to death. It’s odd…a few months ago I was just a human. A shell with a beating heart. But now I’m actually living. I keep having little moments that bring me back to that feeling when I was lying on the bed, it’s as if my brain keeps replaying it, to remind me of what I’ve overcome, and how strong I really am. I keep remembering how I felt when my bowel ruptured, that paralysing sense of terror that ran through my whole body. I’d always told myself “I’d be brilliant in a situation like that” but when it really happens, things completely change. I often wonder what would have happened had I not been at home that evening, had my mum and dad not heard my screams, had Matthew been staying over. So many factors could have changed the outcome, so I’m so glad it happened like it did. When I wrote my blog before, it felt too raw to write everything down in minute detail, but now there is a little distance, I feel I am ready to write how truly terrified I was, purely for my own benefit.
I feel I remember more now, than I did at the time, although I don’t remember the pain as such, it’s as if I’m watching myself, as if I’m standing in the corner of my bedroom watching everything happen, unable to help myself. It’s 12am and I’ve yet to fall asleep, I have the constant feeling as though I need to go to the loo, as if my bladder is very full. I remember having the feeling that something wasn’t right, but a combination of it being late and having two years of professional doctors telling me “it’s just IBS” “it’s all a part of being a teenage girl” left me ignoring my instincts. My stomach pains started getting worse, so I limped to the kitchen to get a hot water bottle and some paracetamol, I felt as if I was full. My bladder felt fit to burst, yet every time I tried to go to the toilet, nothing would come of it. I made my way back to bed and continued to rock myself from side to side, trying to ease the pain. 1am passed, then 2am, then suddenly everything started to speed up. That full feeling suddenly exploded, it felt as though someone had reached inside me and were trying to pull out anything they layed their hands on. I somehow managed to get onto my hands and knees, all the while trying to keep quiet as to not wake my brother. I think this is the point that my body took over, without registering anything, I Began shouting for my Mum, I don’t remember thinking about shouting, it just came out, as if somewhere in my subconscious I was telling myself “this is serious”. I remember her looking at me and getting the phone, I remember looking at my Dads face and being frightened by how terrified he looked. It was then that I began to shake, I know now that this was my body going into shock, but at the time I was perplexed; why was my body doing these things? I wasn’t in control of myself anymore, nature was taking over. I remember my teeth chattering so violently I thought I was going to break them, I remember I couldn’t lay still no matter how hard I tried, I remember the paramedics coming in, I remember my blood pressure being taken and I remember my Mum on top of me, trying to keep my quivering body still, so they could place a canula in my hand. I remember the terror I felt at how sore I was, I remember asking repeatedly “why am I shaking, why am I shaking?” I remember throwing up, and throwing up again, I remember being wrapped in a blanket, strapped to a wheelchair and being wheeled outside to the ambulance. I remember them closing the doors and I remember panicking because I could no longer see my Mum. I remember being strapped into the stretcher and being unable to lay still, I remember asking the paramedic to take the pain away, but he couldn’t. My blood pressure was so low, if they were to give me any more medication, they would have prematurely sent me to my grave. Its now that things begin to slow down, you know those scenes in movies, where athletes start breathing, and you can hear their heart beat. I had one of these moments. I started to concentrate on my breathing, slowing it down to match the sound of the monitors beating in the ambulance. In, out, in, out. Just. Keep. Breathing. In, out. I remember the pain in my stomach, but I felt it everywhere. It was screaming in my ears, it was as though someone was pushing a hot poker through my stomach and out of my back, but then sliding the poker back and forth. I felt it in my chest next, as I was wheeled into a&e, my breathing became harder, someone had moved that hot poker up into my rib cage, they were weaving it between my ribs and tightening and tightening it. Imagine trying to take a breathe but having only a third of your lungs to use; this is how it felt. Next, my shoulder took the hit. By now, my ruptured bowel had had some time to cause damage. Air bubbles were escaping, traveling up my diaphragm and I was feeling it in my shoulder. I repeatedly told the nurses “my shoulder hurts, why does my shoulder hurt?” it was then that they knew it was serious. This was called referred pain, and it was awful. The next bout of agony came when multiple people tried multiple times to insert multiple canulas. But my blood pressure was just too low, my veins had begun to collapse, my body was giving up on me. My temperature was spiking at 40 degrees but I was absolutely freezing, I repeatedly asked for blankets, but they knew not to give me any, my body was trying it’s hardest to cool itself down. I remember begging them to stop piercing my skin with needles, they tried around 10 times to place a canula, but there was no vein to be found, each time they tried to push saline through the line, I would scream in agony, begging and pleading them to stop touching me, stop piercing me, stop hurting me and just make the pain go away. They were all trying their hardest to make me feel better, but in doing so, I felt worse. After giving me fluids they gave me what felt like gallons of morphine. It literally numbed everything, I didn’t feel, I couldn’t think, I had no concentration whatsoever. It was then that I thought I was going to die, I wondered if I was strong enough to make it through surgery, I wondered if my body would be able to handle the anaesthetic or the 6 hours of laying flat on a table while surgeons opened me up and pulled my insides out. It happened again here, that slow, movie-like breathing. I could feel my heart beating everywhere, in the palms of my hands, in my thighs, I even felt it in my tongue. This was it, life or death. I remember feeling quietly terrified, I hate crying in front of people, but the tears came regardless. They prepped me for surgery, explained what was going to happen and sent me off to sleep. The rest, they say, is history.
I often replay this story in my mind, it reminds me of how close I came to death and how much I put my body through. When I was 16 a doctor told me that IBS was just IBS. I needed to “learn to live with it, and find a way to deal with the pain” this doctor couldn’t have been more wrong, but I did what I was told. For almost 3 years I was a ticking time bomb. Literally waiting to explode. I endured far too many hours, days, nights, weeks of excruciating pain, but I’ve come out the other end as a stronger person. It’s because of these doctors that I now know to never ignore my instinct again. Yes, I did cheat death, but now I have all the more reason to make sure I live every moment of my life to the fullest.

wake up with a smile and go after life…Live it, enjoy it, taste it, smell it, feel it.

To live is the rarest thing in the world, most people exist, that is all.

This is one of my favourite quotes, It resonates deeply. I love finding a quote that you can apply to your own life. I find that you can take any quote and depending on your situation, it will just fit somehow, that’s the beauty of language and literature. I’ve taken more time to realise the smaller things in life now that i’ve had no choice but to slow down and take it all in. I’ve realised how each situation can be seen from two aspects; if someone close to you passes away, is it sad that you’ve lost someone, or is it a chance to realise the joy they brought in to your life?
I think each person is the only one who can determine how their life pans out, it’s all about attitude and outlook. Glass half full, glass half empty kinda thing? I once asked a friend this question and her answer still makes me smile today, she took a while to think about it and answered with, “it depends how it’s poured.” I thought this was a bloody brilliant answer! She captures my thought on life perfectly. Two people can have two different outcomes from one situation. For example: if someone is rejected from a job, do they sulk, and blame the world for their failings. Or do they ask the company what they can improve on, and have a new piece of knowledge for their next interview? It’s all about your own personal outlook. I can’t blame anyone for what happened to me, and why would I? I see it this way: yes, I spent two years of my life not really existing, but now I have the knowledge that I need to make every moment count. Yes, I now have an ileostomy bag, but this means I can eat pretty much whatever I want and I’ve learned now more than ever not to judge a book by it’s cover. Yes, I spent almost two months in hospital, but I’ve seen how hard people are willing to work when they see someone who needs them. Just remember, when you’re all cosied up for Christmas with your family and friends, there will be some people who are in a hospital bed, stitched, bruised and punctured, and there are those individuals that are working hard to care for these people. There are the nurses, doctors, paramedics, police men, firemen…they all base their careers on caring for others, I think that is extremely admirable. I’m not religious, and I don’t believe you come back after you die, so I’m going to make the most out of this life that I have now. Of course if I want to be sad and take a while to feel sorry for myself I will, because that is all in the process of healing. But the most important thing is that I realise how lucky I am to be alive and cherish every moment.
I want to thank everyone again for reading my blog, I’ve had almost 1000 views since I started it and I am honestly completely overwhelmed by the support I have received. To give you a little update, I am doing well since my last little op. My stomach is still a little tender at moments, especially when I sneeze! But I haven’t taken a painkiller in almost a week! Which is the first week in three years I’ve managed to wake up and not take something to dull my aches and pains, it feels magnificent. Paddy is growing tremendously, he can now reach the living room table, so cakes, biscuits and other culinary delights are now unsafe at these lower levels. His lovely little face when he bounds towards you in the morning is enough reason to wake up as the thought of eating breakfast without pain is!
I must say, without sounding pretentious I am very much in love with life and the little gifts it throws my way.

Thank you again for reading, and remember; to live is the rarest thing in the world, most people exist, that is all.

are you really living?