Chemically calm.

This week has been an emotional roller coaster. I feel as though I have been catapulted back in to a world with daily pain, uncertainty and fear. I feel as though my mind has become accustomed to dealing with pain. I managed to conceal it for two years and it’s as though when I am sore, my way of coping with it is to work around it. For example; I had to go into work last week for a few hours, but because my stoma is slowly being suffocated again, I was in a lot of pain. Without even registering it, I wouldn’t eat anything until after work, simply because the pain of being hungry is much less than the pain of a blocked bowel. It wasn’t until I sat down at 3 o clock to eat something that I realised what I had done.
With that realisation came a wave of emotions. Although I knew my bowel wouldn’t be rupturing again, I was paralysed with the idea that something like that was going to happen. I felt as though the world was collapsing on me. why was this happening to me yet again!? what had I done to deserve this never-ending pain? I was really struggling this time, I knew things had to be done, but a part of me was just saying; “just stop eating, that will solve everything.” I survived for two years on water and the slightest amount of food that I could, why not do it again?
But I found myself calling the hospital to speak to a stoma nurse. Then I asked my mum to take me to a&e. I told my surgeon my predicament and he suggested two things: we either go in and cut your muscle again, or we bring forward your reversal. I was torn; do I want to put my body through a small operation to then wake up and know that I will still need a reversal in a few months? Or do I just go for it and book my reversal. After discussing with the doctors and surgeons we came to the conclusion that the reversal was the best idea. What was happening was because my intestine has been brought out through my stomach wall, the stomach muscles were viewing my stoma as an intruder and closing around it. Meaning food was struggling to pass through my bowel. This lead to painful stomach cramps and a very noisy stoma! I spent a few days in hospital, until my surgeon said he would prefer to do my surgery through election rather than as an emergency. So he booked me in for a MRI scan and told me we would book a date after we got the results from that. In the mean time, I needed a solution to stop the pain, which brings me to today. The surgeons have given me catheter tubes to put up my stoma and drain the content. It not very pleasant but it certainly helps with the pain. The thing is, I seem to be struggling, not physically, but mentally. I’m tired of the frequent trips to the hospital. I’m tired of the pain but mainly I’m tired about everything feeling so uncertain. You will have noticed that this post is filled with questions. I’m tired of my head continuously being bombarded with these questions. I’m knackered of the ‘what ifs’ and I’m struggling to take in the idea that a lot of other things could go wrong in the future. What if the reversal goes wrong? What if after the re-join my bowels split and leak? What if all the radiation I’ve had pumped into my veins after numerous scans causes me to get cancer? What if, what if, what if. I’m tired that I feel as though I can’t give my friends the attention they deserve. I’m tired of snapping at my family because I’m putting all my focus into thinking about my bowels. I’m tired, plain and simply medically exhausted.
However, there is a part of me that keeps reminding me of my motto: life’s too short. Far too short. If I were to be hit by a bus tomorrow, would I die feeling as though I had done everything I wanted to? The chances are, I probably wouldn’t have even reached half of the things I wanted to have done. It was this moment that I decided to whip out the iPad and write a blog.Nothing helps me more than documenting my feelings. I’ve taken the time to be tired and now it’s on to finding the solution. I have never been one to bask in my own misery, what’s the point? I think you all know my answer already: life is too, bloody, short. Make the most of what you can, enjoy what’s enjoyable and stick a catheter tube up what isn’t!

life’s too short, so love the ones you’ve got. Cause you might get run over, or you might get shot.


Quick update.

For those of you who don’t have Facebook; I have a small update. On Friday night my stomach started getting quite sore. I was experiencing the same symptoms as before: distended stomach, very noisy stomach, I’d have no output for hours, and then loads of output very suddenly. I was having sore cramps and generally not feeling very well. It was as though something clicked in my mind though, it hadn’t gotten too bad, but I knew it was heading that way. So off we popped to a&e were I was admitted without the doctor even seeing me! I think they trust my judgement enough now that they don’t have to examine me! I had an abdominal xray and they nicked some of my blood and then off I popped to sleep. I go to hospital prepared now, so I had ear plugs and an eye cover with me. It’s funny as most of the nurses know me by name, so all the other patients were laughing and telling me that i must basically live there. Anyhow, I’m getting an MRI scan tomorrow and they’re planning to do my reversal next week rather than at the end of march as they think my muscle is suffocating my stoma again. I’m both nervous and excited. I’m nervous because it’s another big operation, but I’m excited because it’s the start of something new. I’ll have staples in my stomach again and I’ve had to stop my new job (which I’d only been at for a week!) but I’ll get there! it’s actually quite fun being at the hospital when everyone knows you, everyone is wishing the best for you as they’ve been there through everything and only want to see you get better. I shall keep you all updated and post when I can! wish me luck!

Faulty fairytale.

There lay a beautiful young woman. Her hair fell from her head like water from a fall, delicately swaying with each intake of her sweet, delicious breathe. Her pale skin highlighted her piercing blue eyes, making them leap from her, and into your soul. She didnt need to use words with those blue, blue eyes, they spoke wonders. Full of life. Her neck curved perfectly down to her wonderfully sculpted shoulders, each lifted slightly to brace the cold. Her stomach was one of immense beauty; slightly rounded with perfectly proportioned hips. Her skin was like velvet, soft and inviting and right above her…What!? A shitsack!? That’s not part of the fairytale!
– but life isn’t a fairytale, is it? I’ve realised now, more than ever, that you can’t script your life. You can’t plan out how you are going to look, live, and feel in advance. It’s a day by day thing, you have to live life gradually, grasping at whatever is thrown your way. I’ve also realised that you have to take the good and the bad, because with one, comes the other. Today I started my new job, I was so excited about a new beginning, a new adventure if you will. All was going well until I smelt that heart stopping smell that I knew all too well. Yes, on my very first day, my ileostomy bag had decided to remove itself from my skin, leaving the content to make it’s way down my stomach, covering me, my underwear and my trousers in an ungodly substance. I promptly went to the toilet, cleaned myself up and put on a new bag, I remained calm and collected, not letting on to anyone what had happened. I carried on my day, but my heart wasn’t in it, the new excitement had gone, my hope of a new beginning had been crushed by the stark reminder that life isn’t a fairytale, I’m not a princess, and things just won’t happen how you intended them to. At the end of the day I climbed in to my car feeling dirty and numb. My own body had failed me yet again and I was so, so upset. It was as if I was on autopilot, my body just drove the car, but tears were streaming down my face, I was struggling to breathe with the huge sobs that appeared to be taking over my body. I was mortified, yet again. I got home and continued to cry, it appears this mishap had upset me much more than the previous. In fact I was still sobbing until around 10 minutes ago when I began to write this paragraph and I realised I shouldn’t be mortified, this is who I am now. it’s not how I planned to be when I was 19, i didn’t expect to have a portion of my small intestine on the outside of my body. Nor did I plan to have a 10 inch scar inhabiting my stomach, but that’s just what happens. I need to realise that no matter how much planning I do, or preparation I take life will always throw one more challenge your way to make sure you’re paying attention. If things like this do happen, all I need to do is remind myself that I have a wonderful family, who love every part of me (including my faulty bowels) I have a man in my life that is not only my best friend, but the most wonderful boyfriend I could imagine and I have friends who I know will love me unconditionally no matter what. I have been on one hell of a ride and if all it takes is me writing a blog each time I feel down to remind myself of what I have, then maybe my fairytale life isn’t so far fetched after all.

Dream or reality?

I found a few poems this week, poems that I had written whilst I was very ill. It was oddly cathartic reading over them and realising how far I’ve come, it’s only just dawning on me how close I was to death. It’s odd…a few months ago I was just a human. A shell with a beating heart. But now I’m actually living. I keep having little moments that bring me back to that feeling when I was lying on the bed, it’s as if my brain keeps replaying it, to remind me of what I’ve overcome, and how strong I really am. I keep remembering how I felt when my bowel ruptured, that paralysing sense of terror that ran through my whole body. I’d always told myself “I’d be brilliant in a situation like that” but when it really happens, things completely change. I often wonder what would have happened had I not been at home that evening, had my mum and dad not heard my screams, had Matthew been staying over. So many factors could have changed the outcome, so I’m so glad it happened like it did. When I wrote my blog before, it felt too raw to write everything down in minute detail, but now there is a little distance, I feel I am ready to write how truly terrified I was, purely for my own benefit.
I feel I remember more now, than I did at the time, although I don’t remember the pain as such, it’s as if I’m watching myself, as if I’m standing in the corner of my bedroom watching everything happen, unable to help myself. It’s 12am and I’ve yet to fall asleep, I have the constant feeling as though I need to go to the loo, as if my bladder is very full. I remember having the feeling that something wasn’t right, but a combination of it being late and having two years of professional doctors telling me “it’s just IBS” “it’s all a part of being a teenage girl” left me ignoring my instincts. My stomach pains started getting worse, so I limped to the kitchen to get a hot water bottle and some paracetamol, I felt as if I was full. My bladder felt fit to burst, yet every time I tried to go to the toilet, nothing would come of it. I made my way back to bed and continued to rock myself from side to side, trying to ease the pain. 1am passed, then 2am, then suddenly everything started to speed up. That full feeling suddenly exploded, it felt as though someone had reached inside me and were trying to pull out anything they layed their hands on. I somehow managed to get onto my hands and knees, all the while trying to keep quiet as to not wake my brother. I think this is the point that my body took over, without registering anything, I Began shouting for my Mum, I don’t remember thinking about shouting, it just came out, as if somewhere in my subconscious I was telling myself “this is serious”. I remember her looking at me and getting the phone, I remember looking at my Dads face and being frightened by how terrified he looked. It was then that I began to shake, I know now that this was my body going into shock, but at the time I was perplexed; why was my body doing these things? I wasn’t in control of myself anymore, nature was taking over. I remember my teeth chattering so violently I thought I was going to break them, I remember I couldn’t lay still no matter how hard I tried, I remember the paramedics coming in, I remember my blood pressure being taken and I remember my Mum on top of me, trying to keep my quivering body still, so they could place a canula in my hand. I remember the terror I felt at how sore I was, I remember asking repeatedly “why am I shaking, why am I shaking?” I remember throwing up, and throwing up again, I remember being wrapped in a blanket, strapped to a wheelchair and being wheeled outside to the ambulance. I remember them closing the doors and I remember panicking because I could no longer see my Mum. I remember being strapped into the stretcher and being unable to lay still, I remember asking the paramedic to take the pain away, but he couldn’t. My blood pressure was so low, if they were to give me any more medication, they would have prematurely sent me to my grave. Its now that things begin to slow down, you know those scenes in movies, where athletes start breathing, and you can hear their heart beat. I had one of these moments. I started to concentrate on my breathing, slowing it down to match the sound of the monitors beating in the ambulance. In, out, in, out. Just. Keep. Breathing. In, out. I remember the pain in my stomach, but I felt it everywhere. It was screaming in my ears, it was as though someone was pushing a hot poker through my stomach and out of my back, but then sliding the poker back and forth. I felt it in my chest next, as I was wheeled into a&e, my breathing became harder, someone had moved that hot poker up into my rib cage, they were weaving it between my ribs and tightening and tightening it. Imagine trying to take a breathe but having only a third of your lungs to use; this is how it felt. Next, my shoulder took the hit. By now, my ruptured bowel had had some time to cause damage. Air bubbles were escaping, traveling up my diaphragm and I was feeling it in my shoulder. I repeatedly told the nurses “my shoulder hurts, why does my shoulder hurt?” it was then that they knew it was serious. This was called referred pain, and it was awful. The next bout of agony came when multiple people tried multiple times to insert multiple canulas. But my blood pressure was just too low, my veins had begun to collapse, my body was giving up on me. My temperature was spiking at 40 degrees but I was absolutely freezing, I repeatedly asked for blankets, but they knew not to give me any, my body was trying it’s hardest to cool itself down. I remember begging them to stop piercing my skin with needles, they tried around 10 times to place a canula, but there was no vein to be found, each time they tried to push saline through the line, I would scream in agony, begging and pleading them to stop touching me, stop piercing me, stop hurting me and just make the pain go away. They were all trying their hardest to make me feel better, but in doing so, I felt worse. After giving me fluids they gave me what felt like gallons of morphine. It literally numbed everything, I didn’t feel, I couldn’t think, I had no concentration whatsoever. It was then that I thought I was going to die, I wondered if I was strong enough to make it through surgery, I wondered if my body would be able to handle the anaesthetic or the 6 hours of laying flat on a table while surgeons opened me up and pulled my insides out. It happened again here, that slow, movie-like breathing. I could feel my heart beating everywhere, in the palms of my hands, in my thighs, I even felt it in my tongue. This was it, life or death. I remember feeling quietly terrified, I hate crying in front of people, but the tears came regardless. They prepped me for surgery, explained what was going to happen and sent me off to sleep. The rest, they say, is history.
I often replay this story in my mind, it reminds me of how close I came to death and how much I put my body through. When I was 16 a doctor told me that IBS was just IBS. I needed to “learn to live with it, and find a way to deal with the pain” this doctor couldn’t have been more wrong, but I did what I was told. For almost 3 years I was a ticking time bomb. Literally waiting to explode. I endured far too many hours, days, nights, weeks of excruciating pain, but I’ve come out the other end as a stronger person. It’s because of these doctors that I now know to never ignore my instinct again. Yes, I did cheat death, but now I have all the more reason to make sure I live every moment of my life to the fullest.

wake up with a smile and go after life…Live it, enjoy it, taste it, smell it, feel it.

Shit happens.

I had a bad day. Well, to be more specific; I had a bad night, therefore I had a bad day. It was the last night before Matthew left to go back to England, so we stayed up till about 3 talking nonsense and having a great time. I then woke up around 5am to find my bag had burst, there was output everywhere, hence the appropriate title, “shit happens.” I’ve never felt so humiliated. Have you ever had that feeling when you feel like a child and you’ve done something wrong? I felt like this, but coupled with crippling embarrassment and humiliation. Here I am, a 19 year old teenager, in bed with her boyfriend and I’ve literally shit the bed. I’ve never felt so small in my life, I just wanted to curl up in a ball and never uncurl. I think the combination of it being early in the morning, me having no sleep, having Matthew in the bed and knowing that this was the last night before he left just had me feeling extremely sorry for myself. I gathered my stoma products together and went to the bathroom, cleaned myself up, had a freezing cold shower, put a new bag on, sat down and cried my eyes out. You see, I’m usually a control freak, I don’t like having things done for me, I’m too independent. I also don’t like things happening to me that I have no control over. Having my bag burst made me feel so helpless, so dirty and disgusted in myself. I know I couldn’t have done anything about it but I just detest the fact that I let it happen. I quietly went upstairs and got some more bed sheets and came back down, all the while holding my bag to try and heat the glue up to make it stick more, trying to see through the haze of teary eyes and trying to wipe my nose without hurting my new nose piercing, I was a mess. It was then that Matthew woke up, saw me struggling and took everything from me. He pulled me into his arms and calmed me down, told me there was nothing to be embarrassed about. His words were; “Roisin, look what you’ve overcome. You’re the bravest person I know. You’ve nothing to be embarrassed about” he changed my bed for me while I went to get a tissue, I got myself some new pyjamas and he tucked me back up into bed. Although I had a bad night, I’m not going to let it phase me. I’m a strong, brave, independent woman, who has overcome something I would never wish upon anyone. Accidents happen and why should I be so humiliated when it’s something out of my control? Although I’m not in uni, I’m learning everyday. Last nights lesson is that I need to accept that I can’t always be in control of what happens, I just need to understand that if it’s good; it’s a memory and if it’s bad; it’s a lesson. This stoma saved my life, why should I detest something that allowed me to live? Without it I wouldn’t have been lying in bed with Matthew in the first place. Yes, it was humiliating, but it’s not the end of the world. Shit does happen and I need to learn that I have no control over things like this, it’s simply life teaching me how to live. So yes, I had a bad day, but it’s not a bad life. I’ve got to remember to take the good out of every situation.

“rock bottom is just good solid ground and a dead end street is just a place to turn around.”