Survival instincts.

“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.”


12 thoughts on “Survival instincts.

  1. Loved reading this. So happy to hear you are home and recovering. Really hope you never have to endure pain like that again, I did not understand when your mum texted me why you would have pain in your shoulder tips but now it all makes sense after reading your explanation. Stay strong Roisin, you’re brilliant!

  2. This is Roisins Mum and this is an accurate description of the last week – painful, frightening, stressful and traumatic. There are very few words to describe the despair we all felt and it will take all of us a long time to get over. But we will get over it because we have Roisin.

    Throughout the whole ordeal our darling daughter has shown a strength of character way beyond her years. Her passive demeanour conceals a warrior woman – full of determination, understanding, intelligence, resilience and grit. It has left me humbled.

    Roisin you have made your story public in order to help others and I am sure this will be the case many times over. Thank you for coping so well and thank you for trying so hard. You are my inspiration, you are my light, you are my life – thank you for being my daughter, love Mum xxxxx

  3. I cannot possibly know how it feels to have a stoma, I know it is possible in my future but I hold out hope that perhaps I will hold on to the inner strength I have. I may not. I have battled with depression for 22 years yet I am 30. I wish I could reject temgesic (morphine stopped working for me) and battle through like you did. You are a braver woman than me. I am glad you did a poo and enjoyed, if that’s the right word, it. Keep up the good work, never give up hope and give your Mum a hug from me. We all have our battles, am lucky my Crohns is behaving(ish) and it is my Hidradenitis giving me problems. Will have a read of your blog for sure xxxxxxxx

    1. Thank you very much, I’m only recently diagnosed but it feels like I’ve been to the moon and back. 5 months of having crohns, 5 surgeries, 1 bag, countless needles…maybe it’s time I had a little rest from it al now? Haha x

  4. Hi Roisin, it was great to meet you in hospital last week…although the circumstances werent all that great and I was well under the influence of the dreaded morphine for most of it!!
    I hope you’re recovering well at home.
    Apparently my ileostomy went really well and I now have a fully functioning stoma!
    I jut got home today and couldnt wait to read your blog, it is amazing and described so well… thank you for the inspiration. It is a long haul but with positive thinking it will all be worth it in the end! Bring on the reversal!!!
    Cheryl x

    1. Aw Cheryl I’m so glad you wrote! I was wondering how you were, I hope you’re feeling better than you did. Having an ileostomy changed my life for the better, although it didn’t come without it’s problems! You’ll learn to live and love with your stoma as it gives you a new lease of life! Thank you so much for reading my blog, I hope you’re doing well back at home with your little lady! I’m sorry I never said goodbye, but you were fast asleep and I know how precious sleep is in hospital! If you have any questions or worries about having a stoma, or having the reversal then please don’t hesitate to ask, there are a lot of gory details in my posts, but don’t be put off! Haha šŸ™‚ sooo happy to hear from you! Hope you’re resting and doing well! Roisin x

  5. Hi Roisin,

    Elyse here. You just commented on my blog, and I let you know that I, too have Crohn’s.

    I had the surgery you just had nearly 30 years ago (Nov 1982/Feb 1983). I was the 100th operation done, and at the time it was so specialized that in the US it was only done at Johns Hopkins and at the Mayo Clinic. My doctor had done 6 before me. Mine was done at Hopkins.

    It changed my life. And absolutely for the better. I was 25 and unmarried when I had the option of a regular ileostomy (with bag forever) or the just-beyond-experimental surgery. I have NEVER ONCE regretted my choice.

    With Crohn’s you get some complications sometimes. So just keep in touch with good doctors and listen to them. And pay attention when things don’t seem right, because the doctors can make them right!

    Good for you — I wish you a speedy recovery and a NORMAL number of poos!

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