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. 

7. SPICY FOOD IS THE ENEMY. 

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.   

Nightmare.


The sea roared.  The waves orchestrating a symphony of perfect disharmony. Clashing and crashing into one another; a never ending crescendo. Descending, impending, alluring, confusing. All-consuming.  The mean glare of the moon danced on the magnificent waves, neoteric and electric. Waltzing and jigging and dancing and prancing and leering and jeering; searing and blinding and terrifying. Drowning.

 

 

Woah! we’re going to….


So my boyfriend, two of my friends and I have decided to go to Turkey for a weeks holiday. We leave on Tuesday, “how fantastic!” you say? Well, first there are a few points I, and probably every other IBD sufferer must consider:

1. What if the authentic Turkish food sets my bowel into spasm?
2. I can’t drink the Turkish water, it may have chemicals in it. What if my delicate stomach decides to play up if I drink some? Wash my salad leaves in it? Have a cup of tea? Open my mouth during a shower (see Charlotte during Sex and The City 2)
3. What if I need the loo quickly? Many loos in Turkey are apparently a simple hole in the ground with no toilet paper…IBD hell.

I also must consider that I struggle with dehydration as my ilium has been removed. (the part of the bowel that absorbs salts and nutrients) add this to the fact that last week in Turkey the temperature was reaching 40 degrees and I must consider that we might have a problem. I drink roughly four litres of water here in Scotland every day, where 101% of the times it is raining, what am I going to be like with that big old yellow thing in the sky beaming down on me?

If I need a hospital, will they understand English? Do they have have the right things to treat a flareup? Will it by hygienic? Will they give me water!?!?!? Oh dear lord. How do you say “bowel” in Turkish?!

Not to mention my health insurance, which is, of course, more expensive as I have a chronic illness, will it be okay? Will they rob me in my naive state?

Will my scar be okay in the sun? Will it pop open like a scene from Alien? ahhhhhhh

Breathe Roisin, breathe.

And as I lay here in the foetal position, rocking back and forth, I realise I’ll be in Turkey, most likely with a cocktail in hand, in the sun, in a gorgeous White dress my Mum bought me. That thought calms my mind a little, until I take a sip and my chilled bottled Highland Spring water and slowly I feel the panic rising again…