swift run the sands of life, except in the hour of pain.


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. 

Advertisements

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…

Lost at sea.


As she trod carefully, avoiding all obstacles in her path; the sudden realisation of the choice she was about to make hit her like an empty ship abandoned at sea, crashing upon her with its almighty strength. Holding herself tight, she struggled to breathe, the air abandoning her lungs; she was suffocating. Tears began to pool in the corners of those blue, blue eyes, wide with fear. Suddenly she felt young again, naive and terrified, she needed to be held. Clutched safely to someone’s chest, she longed to hear the rhythmic beat of their heart, nothing could slow hers as it pounded in her ears, forcing her skull to pulsate to accommodate the blood gushing through her veins. She felt it thud deep in her stomach, her arms instinctively wrapped around herself, clutched protectively around her small, fragile frame. The hair on the back of her neck stood tall, stalling the sweat slithering slowly down the curve in her neck. She was drowning, consumed with fear. Which way should she go? Both directions were painfully dark, rigged with everything she had ever avoided, one was undoubtably going to end her, crush her in an agonisingly slow manner. Thieving the light from her eyes, the flesh from her bones. Feeding forever on her strength, her sanity, until one day her mind and her beating heart seize. Frozen in a realm of mirrored walls. unable to escape she’d sit, glaring at who she had become. Forever haunted by the fear of what could be. This diseased ridden beast had torn through her like an animal possessed, robbed her of her adulthood, memories tainted with it’s constant torment. She was pissed. Furious that things had come this far. She glanced nervously down the remaining path, her heart drilling through her chest. It was dark, uncertain and she knew to take that one fatal step would mean catapulting herself into the unknown. Somehow she knew it would be painful, she understood that she was going to suffer immensely. This thought, although terrifying, calmed her mind. Something was urging her to move, to make a choice. Silencing her mind she released her body, unaware she had been gripping herself so tightly. Her pulse was slowing, reassuring her that she still had some control over her own body. Tentatively she tested her legs. Yes, she was still in control. Flexing her fingers, she moved them through the cool air. Closing her eyes she took one final breath and slowly released her feet from their firm stance, she took a step and smiled. This was it, the journey begins.

– R. x

Do you feel alive?


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

Life.


“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 r_robertson@hotmail.co.uk I’m happy to answer any question!

Patience.


Let me ask you a question – What is your most admirable personality trait? Take a second, take a day, take as long as you wish, but do have a think about the answer to this question. Once you have the answer, cherish it. Own it and allow it to forever grow within you.  I was asked yesterday what I thought my most admirable trait was and I must admit, it had me stumped. However, today I believe I have come to an answer.  The past three years have taught me that I am intensly, incredibly, exceedingly, emphatically, neurotically patient.  I came to this conclusion whilst on the loo. Yes, I blog on the bog.  Do bare in mind that I probably spend a good three hours of my day in the bathroom, I spend almost all day thinking about my bowels and when I’m not thinking about them, I’m writing about them so that you lovely people have the joy of thinking about them for me! For those who haven’t read my previous blogs, I am three weeks post surgery after having my stoma reversed. I’m doing well, my scar is healing fantastically after a small infection, I’m still taking pain killers and I’m spending most of my time either in bed or on the toilet, but I’m okay with that. I’ve learned that everything will take time, healing takes time, both physically and emotionally. I’ve been ill for three years and some mornings I wake up expecting a pain-free, functioning bowel. Some days I wake and my mind is clouded with frustration, it seeps from my pores and sweetens my breath with its bitterly sour taste. But that feeling is always short-lived after I remind myself that (you guessed it) life is too short. I have a wonderful family, incredible friends and I’m lucky enough to have found the most caring, trusting, beautiful man on this planet. Life is good. Okay, I can’t eat certain things, I always need to know where the nearest toilet is and my future is plagued with hospital visits. But luckily for me I have an army of loyal followers who are right there beside me, every step of the way. Patiently awaiting my awakening patience. So…for anyone who may stumble across this blog, what is your most admirable personal trait? Let me know!

It’s like riding a bike…


“one day, much too soon, the end will come to each of our precious, brief lifetimes; knowing this; live fearlessly; leave unchallenged not a single obstacle between yourself and the realisation of your most joyous dream”

With this being said: I’ve decided to finish my studies at university. Yes; I adore learning about the human mind, I am like a sponge, absorbing each molecule of the fascinating, intricate, beautiful workings of the wonder that is the human mind. I could sit for hours reading books, articles and the dreaded online journals simply to leave myself asking more questions than I started off with. I love psychology, it is to me as water is to a fish: vast, captivating and necessary. However, I will forever be learning about the mind. The past five months have taught me more about the mind than any book can. It is an incredible thing. Capable of storing hundreds of thousands of images, sounds and tastes. Capable of blocking out memories too raw for you to re-live. Capable of allowing you to forget excruciating pain and reminding you every day of what you are on this planet to do: live. Some view religion as their path in life, to spend their time preparing themselves for a life in heaven. Some believe they are on this planet to work, to set a goal and achieve it. Others simply have no understanding as to why they are here…yet. Some see the good in everything, others, not so much. But each and every individual is here to live. I highlight the most important word in this sentence for extra emphasis: It is only you, the individual that is capable of paving the way for your own future. I recently had what you would call an ‘off day’. I was full of hatred, blame and denial. I was angry that I was sitting in my house doing nothing, because I couldn’t do anything. I was immensely frustrated that I was told not to lift anything heavier than a kettle, I was furious at my body for being painful and I was terrified that this wasn’t the end of all my suffering. It had finally sunk in that Crohns disease is like a puppy; it is for life, not just for Christmas. Was I ready for this commitment? Could I face the fact that I may be back in hospital in a month, a year, a decade? What surgeries do I face in the future? How many more tubes will I have to have stuffed down my nose? How many things will I be unable to eat, or drink? – I was spiralling, being consumed by an unknown fear of the future and what possibilities it held. My mind is constantly thinking about my bowels, every sound they make has me on high alert, each cramp sets my adrenaline pumping: if I am to be honest with you, I am completely and utterly exhausted. I need a break from my body, I need something that will allow me to escape, so with each stomach gurgle, I urged myself to write, write and write and you know what? I feel so much better. What is the point in living life if I am afraid of what’s to come, that’s just time consuming. I re- read what I have written and I’m taking my own advice, surrounding myself with good people, good music and good food. The three things that make my life what it is: incredible. I may not wake up each day with a smile on my face but it certainly makes an appearance at some point and right now, that’s all that matters to me.

“Life is like riding a bicycle, to keep your balance,you must keep moving.”