My Story

On Monday 26th January I was admitted to hospital with suspected appendicitis. My appendix was taken out in an emergency operation the following day, but it turned out my appendix wasn’t the problem. I had been gravely ill the previous week and this operation had not solved anything, it had merely given me more pain. With severe abdominal cramps and diarrhea still, I was given two colonoscopy’s. The doctors were unable to get into my colon because of the amount of waste sitting in there. They left me for 5 more days on high pain killers, I was pretty out of it on morphine most of the time but it did not stop the screams of pain and constant rushes to the toilet. It turns out the registrar had misplaced some information from my examinations and not informed the doctor of the seriousness of my case, as once aware, the doctor warned my parents of another operation, judging on how I was coping the next day.

Saturday came and nothing had changed except the extortionate amount they had upped my pain relief. I remember my mum telling them “you wouldn’t keep an animal like this, you’d put it down!”. My best friend was visiting as well as my parents when something didn’t feel right. Something alarmed me and I felt a burst in my stomach. “Did you hear that? Something popped! Did you hear? Mum! Something popped inside me! Help!”. My mum screamed for a doctor but the nurse just wanted to up my pain relief again. My mum wasn’t having any of it! “You get me a doctor NOW or I get one myself”. My friend ran out to the front desk for a doctor, and then called my boyfriend.

All I remember from that moment on is a rush of people. A blur. A doctor shoving a piece of paper in my face for me to sign for an operation and my mum squeezing my hand. I didn’t understand what was going on and I was terrified. My boyfriend came and held my other hand, and all I could see in his eyes was fear. My mum explained to me that I was going to be going into theater. Confused, I cried in fear. It was at that point that I was told if I did not have this operation, I would die. It was then I saw the tears in my boyfriends eyes. The heartbreak. And it’s funny, because at that point, I stopped thinking about myself. The only thing I focused on was making sure I told everyone I loved them. Everybody in that room with me needed to know I loved them.The last thing I’m aware of is waking up in pain. Absolute agony. I couldn’t breathe, I couldn’t move, nothing. I felt like a robot. I felt like the life had been sucked out of me. My mum tells me I cried out “Help… Me… Mum” all night long. I don’t know.

The few days were silence. I didn’t want to talk to anyone about what had happened. I didn’t want to know. I just wanted to forget. Then the nurse came round to check on me. A different nurse. And that’s when I had to look. I peered down at my stomach in fear, and saw my worst nightmare. An ileostomy bag, followed by a large scar down my stomach. I pulled my head up as quickly as I could and sobbed, and sobbed.. and sobbed. I couldn’t deal with it. I felt disgusting. I didn’t understand. Why me?

For those of you that don’t know what an ileostomy bag is.. it’s a bag for your stool. During my surgery, I had had my colon (large intestine/large bowel) removed from my body. I had been diagnosed with ulcerative colitis. It had gotten so bad that if they had left it a little longer, it probably would’ve ruptured.. and I wouldn’t be here. I am now left with just my smaller bowel, which is sewn through to the outside of my stomach, the end is called a stoma. As you can imagine, it broke my heart. It scared me. It made me feel abnormal. I can no longer go to the toilet like a normal person, I can’t eat like a normal person, what’s my boyfriend going to think of me? How will I ever look at my body with confidence again?

Over a week since the operation, they’ve finally let me out and I am starting my two month recovery period. I’m in a lot of pain and I still cannot bring myself to look at the stoma beneath the bag. The disease has caused me to lose over a stone in weight and I am struggling to put it back on as I no longer have a proper digestive system I’ve moved back home and my mum is currently my carer. She’s helping me come to terms with it all. I’ve joined some websites to talk to others in the same situation and I’m going to deal with it, I have to. I have to be grateful, this saved my life. I need to be strong and help myself. This is not going to change me. This is not going to defeat me, and hopefully, I will be able to look at myself and feel happiness again. I’ll be able to appreciate myself as much as I should’ve beforehand. I’ll be me.

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7 thoughts on “My Story

  1. Graham Brown says:

    I went through exactly the same thing in 2004. The thoughts and the feelings are exactly the same and like you I had no warning it was coming, it just hit. They went through the two options of 1) an operation 2) not being alive, so I chose the first one. It was painful, a major operation doesn’t half stop you doing things. Walking was a challenge and had to be learnt again day by day as they’ve cut through your abdominal muscles, but I learnt. Seven years later and I went in for pouch construction, followed by a final reversal. The stoma was moved sides whilst they did the surgery and afterwards people said “how do you manage living with a bag”…..it dawned on me that people who I’d met since 2004 didn’t know that I’d been on a bag since that point. Their face when I said I’d had one for seven years was priceless. I’m now fully reversed and it works well, but will never forget the sudden surgery and a dramatic change in lifestyle

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  2. Sheila Stean says:

    Hi, did it take you long to get used to the pouch? and have you got any advice, my son has his reconnection part in July at Oxford having been 1 year 6 month with a stoma after severe UC that had only just been diagnosed. He is hoping it won’t affect what he eats and drinks as he has got used to eating normally again and putting on his lost weight. Thanks.

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  3. joe says:

    The worst part for me is that I have gotten used to having the bag &the irritation that goes along with it,but I have a reversal coming up in 3 weeks which will put me out of action for a little while-hopefully ,then back to being bullet proof again & a normal life.

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    • Graeme Brown says:

      The pouch is a whole new world. Takes a while to settle down, but once it has its back to normal. Careful what you eat – otherwise you’ll know about it

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  4. Danielle says:

    My name is Danielle and I am from Sydney, Australia. You are so brave and so inspiring. I suffered from UC for 9 years and my sister suffered from UC for 20 years. We both avoided surgery at all costs as we were never properly managed by our doctors. Unfortunately due to the mismanagement of my sisters UC, and many misdiagnosis of her symptoms for the past year, she was diagnosed with bowel cancer. She passed away in December 2015 just 5 short months after her late diagnosis. :(((

    My sister begged me not to make the same mistakes as her, and encouraged me to have the surgery. So in Feb 2016 that’s exactly what I did. I had my J Pouch created in the same surgery as the removal of my large intestine.

    Today, more than 4 months later I have reversed my stoma and am now learning to live with my j pouch. It hasn’t been easy, it’s definitely been a long journey for me and I have had some big hurdles along the way (one week after my reversal surgery I was rushed into surgery again as there seemed to have been a leak in my small intestine at the point where my stoma was closed). I’m doing okay now but I’m still recovering from 3 major surgeries in 4 months and struggling with some pain and the greatest fear of the pouch failing on me.

    Your blog brought tears to my eyes, because I know your suffering and I know your strength. I know how hard it is to get to this point and i admire how brave you are and how inspiring you have become for so many people around the world.

    I wish you all the best of luck in health and happiness for the rest of your life. What we have been through, some people could never imagine, and it’s something I wouldn’t wish upon my worst enemy. But it makes you stronger, and turns you into a better person I believe.

    Thank you for sharing your story! xx

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