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.
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.
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.
Two men looked out from prison bars. One saw mud, the other saw stars.
A year ago today I was taken to Ninewells hospital in an ambulance by two wonderful paramedics. I was met by a fantastic team of nurses who worked quickly, efficiently and professionally. They couldn’t find any of my veins as my blood pressure was too low, my heart rate too high, and I was in two much pain. I was experiencing referred pain in my shoulder tips, repeatedly saying “it hurts up here, it hurts up here!” whilst clutching my shoulders. I was taken for x-rays, I heard the words “nil by mouth” being thrown around and I remember the look of absolute terror on my poor Mums face, she was petrified. I remember a wash of blue scrubs as more and more nurses surrounded me, the occasional green scrub peeking in, standing calmly at the doorway: assessing the situation. I remember the morphine, and then slipping in and out of consciousness. I remember signing forms, being told I needed surgery, there would be a possibility of a bag. I remember phoning Matthew and wondering if it would be the last time I’d speak to him, the last time I’d hear his beautiful voice, I remember the tears, nothing hurt anymore when the fear took over. I remember thinking if I would be able to look down on my family if I did die, if I could make sure they were all okay, I remember questioning my atheism, my distrust in religion, was I really about to find out if it were all true or not? I remember praying, to every and any God there were out there: save me. I remember my parents face through the surgical doors, I felt tiny, as though I were shrinking into the bed, it wasn’t happening to me, it couldn’t be happening to me, surely? I remember the tubes, the beeping, the injections, the soft scent of vanilla as they placed the mask over my face. One last look before the cool liquid penetrated my veins, swimming around my body, blackening my senses and drowning out reality, I remember choking on my tears, then darkness.
I woke up. Awake. I was alive. It hadn’t happened to me though, it was a nightmare, right? I tenderly touched my stomach, it felt hard, wrapped in bandages. I felt my gagging reflexes respond as the tube draining my stomach content hit against the back of my throat, irritating the inside of my nose. I remember the main line, feeding drugs under my rib cage and straight to my heart. My beating heart. The monitor lines pressed onto my chest were itchy and I couldn’t verbalise my annoyance. Then I slept. I slept a lot.
I awoke in The High Dependency Unit, confused, sore and upset. I couldn’t do anything myself. A tube fed me, a different tube let me urinate, a nurse bathed me, drugs kept me sedated. I lay there for what felt like months. I remember sleeping again, there was a lot of sleeping.
Then I remember my Dads hand gripping mine as I had my wound changed, I remember looking at my stomach and feeling repulsed by what I saw, disgusted and terrified. I didn’t look again, I just cried, not caring who heard my sobs. I remember my first steps, like a child, just to the window and back. I remember my first meal; clear soup and jelly, it was delicious. I remember learning and trying to understand what had happened to my body. I remember my wonderful surgeons, my doctors, my heroes.
Then months of pain. Three more surgeries, countless journeys to the hospital, phone calls to NHS 24, A&E, hundreds of tablets, sleepless nights. I remember a lot. Sometimes, too much. Other times I wish I could forget it all ever happened, forget I have this illness for life. But then I remember how grateful I am. Everything that has happened has taught me a new lesson. I may not have loved every minute, but I wouldn’t change it for the world.
Here’s to the many, many years to come!
As I lay there, I realised the truth to life; it is what you make it. Nothing more, nothing less. You are simply an organism, an amalgamation of two sets of DNA. No two people are the same. Love the fact that you are unique because once you realise this fact: Life becomes a whole lot more fun.
There was a time in my life that I felt entirely alone. My body was being poisoning by an abscess that was gearing itself up to burst. My mind was frayed, slowly splitting from the conflicting pieces of information it was receiving. I wasn’t alive, I was simply living. I was a shell of a human, breathing only because my body was programmed to do so. My first thought in the morning was ‘when can I get back to sleep’ yet my sleep didn’t come easily, I was simply in too much pain. In a span of two and a half years, I can count the days that I wasn’t in pain on two hands. A week in France offered me a rare bout of good health, I often conclude that France provided me with an escape from the daily reminders of my awful existence. In France I was happy. No stress, no pain; just pure happiness. I was reminded of what life should be like, but my ecstasy was short lived. I also remember having three days off from my agonising disease in June of 2011, but I know now that this was simply because I was so aggressively ill that my bowel wasn’t working properly, my good health turned out to be a warning sign that something sinister was lurking. On the 8th of September, 2011 that something tore through my body in an attempt to stop my life all together, but as you’re reading this now you can tell, I had a different idea. Crohns – 0, Roisin – 1. I can’t speak for everyone when I say this, but when I was in hospital there were a few times when I felt like no one in the world had ever gone through what I was enduring right then. I kept thinking “why me? why now? why do I have to miss my Mum’s 50th, my Brother’s 18th, and my boyfriends 21st birthday’s all to be sitting in this mother trucking hospital bed?” But I realise now that everyone with a chronic illness must have felt the same way at some point, and the idea that somewhere in the world, someone was struggling alongside me was incredible upsetting, you see, I knew that I would find the strength somewhere to look at the positive, I have an amazing family, an incredible boyfriend, and a set of friends that would do anything to make me smile, but what if someone else didn’t have these critical influences? Who would they turn to? Talk to? Cry to? That is the reason I’ve written this blog, if you happen to stumble upon this, please know that you are not alone; If, like me, you’ve ever been lying in a hospital bed thinking that the world is a shitty place, filled with ignorant people who take their health for granted whilst you’re having camera’s shoved in and out of different orifices, throwing up so often your teeth hurt, panicking about the nurse coming at you with the dreading Fragmin and looking forward to your liquid paracetamol because it’s the only thing that has flavour in your godforsaken liquid diet; you’re not alone. We’ve all been there and we’re all rooting for you, you can do this! It does get easier, and it does get manageable, endure what you must, enjoy while you can!
On that note, as some of you may know, May is the National Crohns and Colitis Awareness Month. That’s right, a whole month dedicated to two debilitating illness’, that affect 1 in every 250 people in the UK. ( source: http://www.nacc.org.uk) It is a chance to get people talking about a disease that crushes its victims internally, leaving them writhing in agonising pain, feeling dirty and helpess. You see, when you’re faced with a lifelong disease, its always Crohns and Colitis Awareness Month, because you can’t escape from it. It’s the first thing you think about when you eat something new, it’s the first thing you think about when you get a sore stomach. Your mind is always spinning, thinking things such as ‘if I eat this will it set of my disease’ or ‘oh god my stomach is painful, I’m going to have to postpone everything if I need to be in hospital again’. You have to come to terms with the idea of surgery, monthly blood tests, monthly vitamin injections, malnutrition, and the idea that this disease is now a part of you whether you like it or not. That is why I am going to ask you a favour: If you do anything this month, please get people talking about #CrohnsandColitisMonth. We’re trying to get it trending on Twitter to encourage people to find out more about a disease that many feel they have to hide. You don’t have to donate, you don’t have to sign up to anything, just please help me and thousands of others to educate the world about a disease that takes your life and shits all over it. (pun intended) Whether you pass on this blog, or ask your Facebook friends to have a read, from myself and everyone with Crohns or Colitis: THANK YOU! Maybe the more we talk about it, the sooner a scientific genius will find a cure!
As always, thank you very much for reading, sharing and believing. – R. x
“When the body goes through what you’ve been through, there is a place it goes to that means no one can get in. You surround yourself with yourself and don’t let anyone else in. It’s a survival instinct the body uses when you’ve been put through such stress.”
This is what I was told happens after a surgical procedure like the one I’ve just been through. I went to a very dark place. I felt no love, no joy, no excitement. It was a short time, but it will be an extremely raw memory for quite some time. You see, I’ve just had my stoma reversed. This involves a surgery that re-opens my original scar down my stomach. The surgeons take my stoma (the end of my small intestine) and join it together with my large intestine. I decided to have an epidural, which would numb my stomach and allow me to be out of pain, but still quite coherent. However, as the rest of my body was untouched by the painkillers, I could feel everything. This would have been alright had I been pain free, but I began to experience referred pain in my ribs and shoulders. Referred pain occurs after the diaphragm has been irritated, a possible bit of blood or air has escaped and causes excruciating pain in the shoulders. This is because when the body is being formed in the uterus, the diaphragm and the shoulders are created at the same time. Therefore the pain experienced in the diaphragm is felt in the shoulders. I can tell you now, I have an extremely high pain threshold. I’ve taught myself to breathe through painful experiences and mentally take myself somewhere else. But this referred pain is so brutally agonising that I couldn’t cope. Each intake of breathe had me screaming my heart out, verbally inflicting my agony on anyone who was listening. It was so exhausting that it left me invalid for the rest of the day. I struggled to keep my eyes open, I couldn’t talk, walk or interact with anyone. It completely consumed me. The doctors decided to put me on morphine to combat the pain, but morphine is a very sinister drug. It slithers through your body, wrapping its morbid, slender fingers tightly around any ounce of normality left inside of you. It is a killer disguised in drug formation, ready and waiting to enter your nervous system, slowly suffocating your senses. One. By. One. For me, pride was the first to go. I no longer cared if I fell asleep whilst someone was talking to me, I had collapsed in on myself, not hearing the people around me. It was clouding my vision, my never ending sense of positivity. Second to pride was my trust. I was beginning not to trust the people around me. When the nurses tried to get me to sit in my chair, I didn’t trust that they would look after me. I didn’t trust that the doctors believed the pain I was in. But the worst thing was, I no longer trusted my body. I didn’t trust it to accept the reversal. I didn’t trust it to continue breathing by itself. I was battling my way through an internal war which was both physically and mentally exhausting. Last to leave was my sense of hope. My hope for a normal life began to trickle through my fingers. I blamed my body for failing me, I blamed my doctors for not spotting Crohns quicker and I blamed myself for whatever I had done to deserve this hell. The morphine was succeeding in it’s quest to completely quell my hunger for life. But after one particularly awful afternoon, something clicked…and it wasn’t my morphine button. I decided that I’d had enough, I put aside the morphine button and fell asleep. In the morning when I woke up sore, instead of reaching for the drugs, I got myself up and walked to the toilets. It was painful, yes. But I could feel the suffocating sensation starting to subside. I started on my breathing techniques; in, out, in, out. Gradually, things became less terrifying. I began taking baby steps, at first it was walking to the toilet by myself, then having a shower standing up, and then finally! The grand awakening of my anus…my first poo! Albeit it was a little painful, odd and ground shudderingly noisy; the smile was on my face for hours. I felt I’d climbed a mountain and accomplished the biggest challenge of all, I was one step away from shuffling through the corridors at my top speed of 0.1mph, wheeling along my drip stand and screaming at the top of my lungs, “I’ve just done a poo!” Things were finally going my way and I felt my usual sense of hope, pride and trust returning. My motto was fresh on my mind and I was determined to get myself fit and healthy and start living my life again. After a week of being in hospital, I was allowed home. Now I’m resting, writing and breathing. I’m living. things are going to take time, I’ve been thrown back a couple of steps, but soon I’ll be sprinting ahead, taking the world by storm. It’s lovely going to the toilet again, and ironically my first fart was like a breathe of fresh air. I keep touching my stomach to check if I need to empty my bag, but I don’t ever want that to stop, each time I touch my stomach is a reminder of what I’ve overcome, and I am so, so proud.
“there on my stomach is a map of the roads that I have travelled. Like wrinkles upon a smiling face, they tell a tale of a life. A life of joy, and a life of laughter. But most of all a life well lived.”