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. ūüĖēūüŹĽ 

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.   

Don’t you dare let it break you.


I’ve had a good run! 5 years counting with no flares, very little pain and managed disease on low dosage of Azothioprine, diet and lifestyle but just a little blip in the master plan of conquering Crohns Disease…  I’ve found myself back in hospital with a fistula and an abscess. Whilst visiting Matt on the Isle of Harris, a pain I’d had in my lower back got increasingly worse, I started feeling infected, I was hallucinating, throwing up, and the pain was becoming unbearable. Took myself off to the local A&E on Stornaway where my temperature had sky rocketed, I was irritable and in a lot of pain. The nurses and doctors were amazing; they had me assessed and prepped for surgery in less than 3 hours where they made an incision down my left bum cheek to drain the abscess and suture the fistula. The surgery went really well and I’m now in very little pain at all but it very quickly shot me back into a really dark and terrifying place that you can often find yourself falling into with a crohnic illness. It had me thinking about the long term; how is this going to effect my work? how is this going to impact all of the adventures I had planned this year?  Will this happen again and is there anything I can do to stop it? Will this leave me incontinent in the future? Will I need an ileostomy bag again? There are to many questions swimming around in my head that, coupled with my body being filled with pain killers, I very quickly ended up in a full blown panic attack. But reading back over some previously blogs I’d written reassured me that I’ve been here before. I’ve been in that place that feels so completely isolated and lonely and as if no one has ever felt how you’re feeling and the thing that re-reading my blogs made me realise? It passes. It passes really quickly when you remember how wonderful the doctors and nurses are, or how quick your family and friends are to rally around you. It passes, and I think that’s the thing to remember to anyone reading these blogs…all of this is temporary. There will be respite from whatever pain you’re feeling or whatever dark place you’re stuck in. Allow all of the negative feelings to happen, share them with someone you trust and let them wash over you because it will get better, it might just take your body a little time. I’ve always found writing cathartic, and a lot of that in the past 5 years has been privately in a  blog or a diary but some times it needs to be shared. I know some very close friends who have been stuck in this really shitty, dark place for a while now but believe me, it’s temporary. Crohn’s Disease doesn’t make you, and don’t you dare let it break you. You will be okay. 

One in a Thousand.


I’m a little lost, two years down the line and I still don’t think I’ve grasped the concept of having something for life. I mean, sure, we’ve all thought about finding your soul mate and spending your life with them. Or getting a tattoo and having it blend into how you define yourself. These are the things you want, the things you search for, but when something is forced upon you, and you have no say in the matter, it is a completely different story. I’m trying to find the words to explain what it is like to have a doctor tell you that you have an illness, a disease, something that will effect your daily life for as long as you dare to imagine that life will last. It infects you, the thought that it is lurking, somewhere, anywhere, everywhere. In your joints, in your bones, in your mind. You wonder if that is what will define you. If people think of you and think of¬†it.¬†I’m struggling with the concept of being on drugs for the rest of my life also. It feels so completely unnatural to force a man-made chemical down my throat every day, just trusting the ‘specialists’ word that this is the best drug for me. As if they know me. As if they think of me as something other than a statistic, I’m 1 in a 1000. That’s all I am. nothing special, just another number. But I think they forget that this is the only body I’m ever going to have, I don’t get a second chance at any of this, and if all we boil down to is numbers then I’m gonna be 100% sure I squeeze every ounce of knowledge out of every specialist, every doctor, every blogger, every nurse, every patient I come across. ¬†I will work out the real statistics, from the real people that matter. I will sign up to every medical research trial, ¬†give blood at every blood test, ¬†try every insane, unorthodox ‘cure’ that there is. But I won’t give up. Not until that day I dared imagine comes along.

Just count to 4.


Eyes flicker, merging darkness with darkness. Entering a world of infinite possibilities you soften to the sound of your own heavy breathing. Chest rising, and falling, inflating your lungs with crisp, cold air. You feel your heart beat in your chest, hear it in your temples. It’s so quiet you can almost hear the blood flooding your veins. Your fingers begin to tingle as you re-position yourself and move them from underneath your head.¬†Flexing each finger individually, smiling at the familiarity of your hand coming back to life. You wiggle your toes, stretching out fully before curving in on yourself, hugging your arms close to your chest for warmth. You exhale, counting sheep…1, 2, 3. You Inhale, role over, flex your toes, move your hair away from your eyes. You turn, inhale, exhale. Sleep is imminent, you wait patiently for it to engulf you entirely, send you into a world all your own, when your eyes suddenly dart open. A pain sears through you, landing in your back and sending your whole body rigid. Your breathing stops, your arms shoot to your stomach instinctively. You ride the tidal wave of pain, remembering the ritual you’d taught yourself. Count to 4, slowly and surely. 1, it radiates outward, circling your belly button, slithering and circling like a beast stalking its prey. 2, it darts inwards, as if wishing to remind you it can claim whichever part of you it wants. 3, it tightens around you, inside and out you feel yourself clench. Your breathing is sharp, your lungs failing to cope with the intensity. 4, it begins to ease off, your vice-like grip around your stomach loosens. You are catapulted back into reality, sleep a distant memory. A pain only lasting a few seconds, but the destruction is obvious. You can’t sleep,¬†can you?¬†Maybe you can. Surely this time you can.¬†You flex your toes, roll over and feel your arm beginning to sleep, the familiar tingle darting up your arm. Your eyes close, you focus on your breathing. You roll over, you smile, you can feel the blood circling your head, reminding you everything is working. You breathe, in and then out, in and then out. You relax. Your body softens, you clutch yourself for warmth. You smile. Everything is okay, everything will be okay. You feel your eyes close and your mouth fall open, sleep is fast approaching. You turn, you stretch, you breathe.¬†¬†¬†

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.

 

 

Lock and Load.


Crohn’s Disease is a lot like a game of Call of Duty. You repeatedly¬†get knocked down, hurt, wounded and bleeding, but it’s all about re-spawning and getting your revenge that counts. When Crohn’s comes running at you with its AK-47 it’s all about dodging it’s¬†relentless rain of bullets, finding¬†your feet and fighting back.

Recently,¬†a few days of irregular bleeding sent my mind into absolute panic mode, so of course I took myself right down to the GP. I had my bloods taken, blood pressure measured and¬†a good old rectal examination. It feels as though I could go to the doctors with a sore head and they’d still need to utter the¬†all-to-familiar words¬†“trousers down. Knee’s up.” All came back clear, which was not the answer I was looking for. I’m now being sent for further investigations which basically means I get to look forward to a colonoscopy! A little off topic here, but if you’re reading this and have regular ‘back passage examinations’ try a little game I like to play. The aim is to make the situation as awkward as humanly possible. For example: a junior doctor once approached me and said “I’ll need to give you a rectal examination” to which I replied ” the least you could do is buy me a drink before asking for something like that!” It makes things a little less awkward for you and a whole lot more awkward for them. Hilarity rating = 10/10. But yes, back to Crohn’s. So I’m being sent for a colonoscopy which I can’t say I’m thrilled about. But I think the worst thing is what it’s doing to my head. Every time I get a sore stomach I wonder if/where the inflammation is going to pop up this time, if my joints are sore I immediately put it down to Crohn’s, or if I can’t sleep I wonder if it’s because of the stress I’m putting myself under by worrying about this disease. Some days it all gets a little too much and I feel like I just want to sleep all day and forget that this is part of me. But I’ve realised this isn’t healthy and it doesn’t help. The only way to ensure my body is at its physical and mental peak is to train hard, eat healthy, sleep well and focus on all the good that is going on around me. So I’m throwing myself into training for Tough Mudder, working extra hours at Markies and eating as best as my body will allow. I need to remind myself that it’s pretty much certain that I’ll have another flare up at some point in my life, but I’m young,¬†all I can do at the moment is make sure I’m happy and healthy. If I have a relapse, then there is absolutely nothing I can do. It’s been extremely difficult excepting that fact, but I’m slowly getting there.¬†¬†I’ve got my camouflage¬†on and I’m ready for war.¬†Give me your best shot Crohn’s…you asshole.¬†

Video

TOUGH MUDDERS UNITE.


So for a while now I’ve wanted to do something to raise money for Crohns Disease but I couldn’t decide what to do. At first I thought, what about a sponsored walk? Run? Swim? No. Bike ride? Nah. 12 miles of mud, ice baths, electrocution, monkey bars, 9 foot walls, and blood sweat and tears? Sure, why not. I figured if I was to ask people to sponsor me to do something, why not make it the most difficult challenge I could think of? Hence, Tough Mudder. My friend Robbie and I had been talking about it for a while whilst I was recovering in hospital, and it sounded like a fantastic idea. When it came to signing up, we asked around and it turned out quite a few people fancied it. There are around 14 of us doing it so far, included some of my best friends and my boyfriend. It looks brutal, and to say I’m nervous would be an understatement. But I wanted to do something that would completely push me to my limits, not just physically, but mentally and emotionally also. It’s not until August, so I have a while to prepare myself. Therefore, this blog will now become a page about my progress, my fitness, weight, and everything to show that it is possible to be on your death bed one year and running an S.A.S assault course the next. Wish me luck!

Aside

“giggling at every fart”


I had my hospital appointment last Tuesday and the results were as I expected. My doctor wished to ¬†schedule a colonoscopy to check for any inflammation, or any signs of the Crohns coming back. I had preempted this and decided I’d ask to avoid the colonoscopy. Don’t get me wrong, I understand the importance of a thorough investigation but CT and MRI scans can only see so far, as can a barium meal. ¬†A scope gets directly to where the docs want to look. However, after spending a year researching this disease, I understood that you must look after your bowel. You’re advised against spicy foods, ¬†alcohol, high dairy intake, ¬†excessive fibre, fried foods, high sugar intake; basically EVERYTHING TASTY IN THE WHOLE ENTIRE WORLD EVER! (more on this later) I’d realised you need to treat your insides very gently, and I believed that a colonoscopy, although I know its safe, was something that if i didn’t desperately need, I wasn’t going to have. It takes two days out of your week, you have to drink what I can only describe as liquid hell, and you’re left so full of air that you could cart Felix Baumgartner up into space yourself.¬†So, Dr Groom and I decided I was to get my blood taken and if everything was normal I wouldn’t have the colonoscopy for 6 months. ¬†If anything was out of the ordinary, it was a lovely early Christmas present for me back at Ninewells.¬†

So, a week later I sat eagerly awaiting the doctor calling me with my blood results. They were fine. Which I had expected. My vitamin B12 levels were okay, inflammatory markers were super duper, everything looked good. Which meant no colonoscopy, WOOHOO! After getting these results it got me thinking, I haven’t actually written a post to give you an idea of what to expect after a reversal. I’d spoken to a few people about it, but neglected my wonderful followers on wordpress. So here goes; My experience of life after an ileostomy reversal.

First of all, it was painful. hospital was painful, going for a poo for the first time was painful, realising I was jobless again, out of education and house bound was painful. Emotionally and physically draining. I knew what to expect when in hospital which was easier than the first time round, venflons were a doddle. ¬†Catheters? no problem! An endless amount of painkillers? If I must. As you know, my epidural failed, which made my recover feel twice as long, but the real challenge was once I was home. No doctors, no nurses, just my family and I. They’d removed my terminal ilium which acts as a gate in your bowel, stopping food and allowing the nutrients and salts to be absorbed. As you can imagine, not having this gate meant food literally ran straight through me. I’d heard horror stories that people end up going to the loo up to 50 times a day. To begin with the made me incredibly nervous, I always needed to know where the closest toilet was, how long it would take me to get there, and if they’re were private toilets or the horrible public free for all when you have to poo knowing someone is silently judging you in the next cubicle, giggling at every fart, anticipating the splash landing, staring into your soul as you wash your hands afterwards. But I was pleasantly surprised to find I was only using the loo three to four times a day. I did realise, however, that when I needed the toilet, I only get a few minutes warning and then I HAVE to go. This is one of my biggest let downs after my reversal. ¬†I expected everything to be normal, but this urgency is persistent. ¬†I’m starting a new drug next week which is hopefully going to help, so I shall keep you posted.¬†

Another thing that has changed after my reversal is my eating habits. ¬†I find certain foods don’t sit very well, either making me feel sick, or sending me to the toilet even more frequently than usual. First of all, sweetcorn. My beloved sweetcorn. I absolutely, positively adore sweetcorn. If I could I’d eat it for every meal, every day. ¬†But I find its high fibre content makes my stomach bloat and ups my toilet count to around 6 times a day. I’ve found this with most fruits and vegetables. ¬†Apples, grapes and salad being among the worst. To combat this, I drink a 250ml glass of Innocent Smoothie every morning, which is the equivalent to two of your five a day. I also eat soups, or add peppers and carrots to meals. I think at the moment I’d struggle to eat a very high fibre diet, as I just couldn’t cope with the urgency to go to the loo.¬†

What I’ve also found is I am much more aware of how different foods effect my body. If I’m lacking in anything, I get lethargic, crabby and sleepy. Which I suppose in a way is a great thing, because it makes me eat healthier.
I think one of the hardest things once you’ve had your reversal is coming to terms with it psychologically. Every stomach cramp leaves you wondering whats going on, you panic, wondering when or if the Crohns will come back, how it will effect you in later life. Will it affect your fertility? Will you need more surgery? Will you need a stoma again? It’s always on your mind, and probably always will be. But according to my blood results, everything is fine! So for now, my mind is at ease. We’ll see how I am in six months time!
Overall, life after a reversal is as it was before hand. I have a new found respect for my body, I eat healthier, I go to the toilet more often, and I’m thankful every day that medicine and surgery has come as far as it has.
If anyone has any questions about stoma surgery or reversal surgery, please feel free to ask!