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.
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.
Hello! what a long time it has been. I’m sorry for the lack of posts. A combination of a new job and no internet has meant that I’ve had neither the time nor the facilities to keep you all up dated. But thanks to Sky, we’re now up and running! Let the writing commence!
I’d like to dedicate this post to two people. First of all to my friend, Maddie.
I first met Maddie in August 2011. In Ward 2, Ninewell’s hospital. As I lay there, terrified and shaking waiting for a nurse to place my first ever venflon, Maddie reassured me. She told me what to expect, how it would feel, and not to worry. She was a friend when I needed it most, and calmed me down when I was panicking. Maddie had been struggling with Crohn’s Disease for a long time. She’d tried almost every drug there was, and the disease just wasn’t giving her a break. She recently made the huge decision to have her diseased colon removed and have an ileostomy bag formed. This post is a thank you to Maddie, for your constant support and now to show how proud I am of you. Your immense bravery and courage has astounded me. To have had such a difficult time with such an awful disease, to then take it like an absolute trooper is incredible, you are truly an inspiration.
I’d secondly like to dedicate this post to my boyfriend, Matthew. Today we have been together for five years, and what a five years it has been! He has been right by my side through the good and the bad. When I’ve been in such excruciating agony he was the first to rub my back, buy me paracetamol and hold me while I sobbed. When I was in to much pain to stand in the middle of a shopping centre, he’d sit on the floor with me. He’d fill my water bottle ever night and hold me until I fell asleep. When I was on a drip feed and told not to eat, he’s sneak me chocolate buttons and give me them while the nurse wasn’t looking. When it took me over five minutes to walk up five steps, he’d be standing right behind me, patiently waiting to congratulate my success when I reached the top. He has been my rock, my best friend, and I don’t think I would have survived without him right by my side. Matthew, I love you with all my heart, thank you for standing by me whilst I was a ghost of a human being.
As for my health at the moment, I’m doing great. It has been over a year since my first surgery and I’ve had very little problems. I have an appointment at the hospital next Tuesday to let me know if my Crohn’s is officially in remission, so I will let you know how that goes, although I have a feeling I’m going to get the answer I’m looking for! My scars have healed fantastically, I often forget they are there and smile when I see them in the mirror. I remember my Mum saying to me a year ago “One day, this will all be a memory, and you’ll look back and be thankful because it will remind you how much you’ve overcome and how strong you are.” At the time, I didn’t believe her. I couldn’t believe her. Everything was to raw and intense, I couldn’t imagine a day without pain because I’d been so accustomed to it being there. However, every day is that day now. I don’t take anything for granted because I’m lucky enough to understand how quickly it can all be taken away. How right she was.
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
Do you remember your first kiss? Do you remember the quickening of your pulse, the fast, rhythmic beat of your big lion heart, pounding in it’s bony cage? The butterflies that danced in your stomach and leapt from your lips, catapulting themselves into lightening bolts, electrifying the humid air between you both? The awkward shuffle of your feet trying desperately not to stand on the others toes? This is the meaning of love: to be so completely overwhelmed, so consumed by the beauty of another human being that for a few seconds no one else exists but you and them. Passion. These are the moments that make us feel alive. Grasp them with every ounce of your being.
My loyal followers, I feel as though I owe you an apology; I have not provided you with a steady source of literature. As an avid reader myself, I know the importance of a daily or weekly update. I believe it to be almost, if not a whole month since I last updated, so please accept my sincere apologies.
However that being said, I have been watching the view count on my blog rapidly increasing. To everyone in Sweden: Tjenare! (I believe this to mean hello?) I would like to thank every single one of you reading this, it is incredible enough that people from Britain are reading my blog, but to know that people from all over the world are reading, I am completely overwhelmed. So to everyone, Hola, Goddag, Hello, Hei, Bonjour, Guten Tag, Dia dhuit, Helo, Hej! Welcome to Sallystoma, for those who are here for the first time, let me tell you a little about myself: my name is Roisin Robertson. I am a 19 year old woman from Scotland. I love reading, writing, swimming, antique furniture, music and painting my nails. I studied psychology at university for a year but I now work in an auction room. I used to have an ileostomy bag, Oh, and I have Crohns Disease.
Crohns Disease is a disorder of the digestive tract, it causes swelling, ulcers, bleeding and inflammation anywhere from your mouth to your bum. It is a life-long disease and let me tell you now: it is literally a right pain in the arse! It affects approximately 60,000 people in the UK (according to the official National Association of Crohns and Colitis website) and it is more commonly diagnosed in younger adults. My experience with Crohns disease has been both incredibly terrifying and utterly life changing. Through having this disease I have met the most amazing people, made friends from across the globe and connected with others who are suffering along side me. After struggling for two years with agonising stomach cramps, bouts of chronic constipation and/or constant diarrhoea, bleeding, extreme weight loss, hair loss, snapped nails, bruising on my joints and a borderline mental breakdown my bowel took a hissy fit and decide to spontaneously combust. As hilarious an image this is, it has been the most painful experience of my nineteen years on planet Earth and as crazy as this may sound: I wouldn’t have changed a thing. A very kind man from Sweden reminded me recently that the bad things in life are what mould you as a person. They allow you to grow, expand and blossom, in a way that is completely unique to your own life. It is something you can own and in your own sweet time, you can re live it, again and again.
For those of you who have followed me from the beginning, thank you. You’ve no idea how big a part you all played in my recovery. When I uploaded a picture of myself to Facebook in nothing but my nick-nacks, baring my ileostomy bag, I was shaking with adrenaline, unsure of the response I would receive but I was moved to tears when the notifications started pouring in with messages of support and encouragement. In a place as small as Tayside, to have hundreds of people message me was one of the best feelings you could ever imagine, I’ve saved each and ever one of your comments and I will always have them to read back again and again, so thank you all from the bottom of my heart.
The reason I am writing this post is because this blog recently reached 17,000 views, SEVENTEEN THOUSAND VIEWS! My hope when I first started writing this blog was to spread the word about a disease that wasn’t highly talked about and to have reached 17,000 views is an incredible achievement, I owe it all to you, yes, you reading this right now! So thank you, from the tippy top of my head, all the way through my slightly shorter than average bowel, down to the tips of my toes: thank you. I am eternally grateful.
If you stumble upon this blog as you are frantically searching Google for an answer to an embarrassing question about your stoma, your irregular bowel movements or a family member with Crohns then please do not hesitate to get in touch with me. I am part of a fantastic group on Facebook who I can put you in touch with, and if my personal experience can be of any help then I am right here, ready and willing to help!
As always, thank you for reading, sharing and believing. – R. x
“So much of the profound dissatisfaction in modern life arises because we live in increasingly disconnected ways. It is time for us to regain our connection to life”
For almost three years I was fighting a battle against my own body and mind. For anyone who is reading this that suffers with a chronic disease or illness you may be able to relate: it feels like an endless battle. If you have an argument with a friend or a member of your family it feels awful, but there is always a chance to talk things over and sit down to understand what it was that caused the fight in the first place. However, when it is an internal battle you feel an agony that is indescribable. When I first presented with the symptoms of Crohns Disease I had no idea what was happening to my body. I was being told it was IBS but I knew it was more. I diagnosed myself with polycystic ovaries, ectopic pregnancy, cancer, anorexia and I even began to believe that I was borderline psychotic. I started to believe that I caused my stomach cramps by thinking about them, then I wondered if it was the stomach cramps that caused me to think about it, I would spiral into this never-ending routine, beating myself for causing such violent bouts of pain. As I rapidly lost weight I wondered if this was what an eating disorder was like: a constant voice in your head telling you that food was the enemy, that food was the reason I was in this hell. That is why a part of me is thankful that my bowel decided to rupture. I finally caught sight of the end of this horrific internal war. Over the past few weeks as I’ve been recovering from my reversal, my mind has had time to relax. At first I struggled with waking up and not being in pain, it sounds odd but the pain had become part of my life, it completely and utterly consumed me. It was all I thought about during the day, at work, out with friends, at home and it was all that I dreamt about when I finally took enough pain relief to numb myself into a dull, chemically induced sleep. Now that I’ve had time to stop and realise how important my health is, life has become incredibly vivid. When I look outside I no longer see the hills I’ve looked at since I was 5 but I see life in every form of the word. In the movement of the tree’s, in the smell of freshly cut grass, in the sound of the birds, in everything I look at, smell, taste, touch and hear I notice life. I also notice how precious it is, how quickly it can be taken away and how much it is taken for granted. For the first time in a very, very long time, my body feels completely and utterly calm. Do something for me: sit down, close your eyes and hold your breathe. Sooner or later you will begin to feel your body pulsating, beating a constant rhythm. No, this isn’t the bass from your deafening loud music; this is a heartbeat. A constant reminder that you are alive. don’t ever forget how important that feeling is, because it can stop in an instant. Trust your body to let you know when something is wrong, and listen to it. It took my body two years of screaming out at me, three and a half stone in weight, endless sleepless nights and countless tablets, pills and medicines before I had this realisation thrust upon me. Realise it now and save yourself a life time worth of pointless worrying, stressing and agonising.
As for anyone who is reading this and wondering how I am doing health wise, I’d have to say I’m doing great. I was on anti-biotics after my surgery and my stoma site scar popped open a little. My stitch snapped and had to be fished out and I had a very swollen, bloated stomach for about a month but I’m doing fantastic. I’m going to the loo anything from once to five times a day, and I’m still yet to eat a curry for the fear of the dreaded squirty-bum and ring sting afterwards. My stomach looks like I have two belly buttons and if I stand naked it looks like I have a massive squinty face drawn on my stomach. But it’s all good because I’m breathing, I’m smiling and I’m living. What could be better?
For anyone who reads this who is having a stoma formed, or having an ileostomy reversal, feel free to drop me any questions on here or privately on email@example.com I’m happy to answer any question!