I was going to the loo 30 times a day – all I’d see was a pool of blood
‘Your bowel could perforate at any moment,’ they said. ‘You need surgery – now.’
I stared at the doctors in shock as they told me that my life was on the line.
‘Your bowel could perforate at any moment,’ they said. ‘You need surgery – now.’
I couldn’t believe what I was hearing. I’d thought I’d be given medication and my symptoms would clear up.
Instead, I was being told I’d live the rest of my life without my colon.
I’ve always suffered with my bowels. First with colic, then IBS throughout my childhood, teenage years and early adulthood. This gave me chronic constipation, I’d be unable to go to the toilet for two weeks at a time.
Then, in April 2017, aged 25, my symptoms changed. I couldn’t get to the toilet quick enough – and I started leaking mucus, noticing it in my pants and trousers, plus blood on wiping.
I stopped going out in public in case I had a bowel movement and didn’t make it in time. Just changing position on the sofa could cause mucus discharge.
I assumed it was down to my IBS, so I went to the doctor’s thinking they’d just give me Imodium or something.
I had a blood test that came back fine, and a stool sample test, which showed my bowel was severely inflamed.
I was booked in for a colonoscopy – but then I started to see blood in the toilet.
Throughout June, my symptoms kept getting worse. I was going to the loo up to 30 times a day, and all I’d see was a pool of blood. It looked like a massacre.
I started feeling like my insides were being torn every time I went to the toilet. It was excruciating.
In the early hours of the morning, on Thursday 13 July, I was on the loo and I physically couldn’t move from the pain. In desperation, I called my parents who took me to A&E.
When I got there, the doctor looked at my symptoms and my poo sample – and that was the first time I heard the words ‘Inflammatory Bowel Disease’.
X-rays showed how inflamed my bowel was and they decided to keep me in hospital.
For a few days, I had daily X-rays to monitor my bowels and IV infusions of steroids, plus various IBD medications.
I finally had my colonoscopy the following Monday. Afterwards, the doctors told me it was the worst case of IBD they’d seen in a long time, and classed it as ‘Acute Severe Ulcerative Colitis’.
None of the medication was working – there was still a constant presence of blood in the toilet. They told me the only option was emergency surgery to remove my colon.
‘I can’t go through surgery,’ I said, shocked. ‘I’m only 25 years old’. I’d barely processed the diagnosis I’d been given five days’ previously.
I didn’t know anything about stoma bags, and I had no idea people could live without their colon. I was terrified.
The surgery went ahead on Tuesday 25 July. That’s when they removed my colon and formed the stoma.
The next day, I saw my stoma and burst into tears. At that moment, I didn’t want to live.
It’s like your bowel hanging off your belly. My first impression was: ‘I’ve got a foreskin attached to my stomach’. I was terrified my fiance wouldn’t want to marry me any more.
It wasn’t just the stoma, though.
On the day of my discharge, my belly was swelling and going purple. I stood up – and to this day, I can’t get the smell out of my nose.
The stench of rotting flesh hit me. There was a warm liquid trailing down my leg, a load of brown stuff.
It turned out I had sepsis, and my body had dealt with the infection by bursting my wound open.
That took around three months to heal.
But it still wasn’t over. From the very first night I was finally discharged, the cramping started – I’ve never experienced pain like it. There was blood in my stoma bag and no faeces were coming out at all, so there was no movement of the bowels.
I was hospitalised with a bowel obstruction – which is a blockage in either your small or large intestine. They got rid of it – but I went on to have two more bowel obstructions over the next two weeks.
For the third obstruction, 111 called an ambulance because I’d thrown up with the pain. I was stuck in the bath – my now-husband had to lift me out, and I was screaming in agony.
It turned out I had a twist in my bowel, which was the cause of these obstructions and on 19 August I had more emergency surgery to get rid of it.
My bowel still wasn’t functioning properly afterwards, though, and I was still getting obstructions – so in early 2018, they decided to give me a J pouch instead of a stoma.
This means your bowel drops straight down into a J shape; so they thought it could potentially manage my obstructions. And, if it was going to give me a better quality of life, I was all for it.
I had the eight-hour surgery on 26 April 2018. They removed my rectum and created a ‘J’ shape out of my ileum (the longest part of the small intestine). This then acts like a rectum, storing some of my stools.
That took around three months to heal. I still had the stoma during this time, because they had to make sure the J pouch healed inside.
Everything seemed to be OK, so on 12 July 2018, I had my final surgery. They removed my stoma by putting my ileum back inside my stomach to connect back to the J pouch.
I then had full function of the pouch, so I could go to the toilet from my back passage again. This meant I could dispose of my digestive waste without a stoma although my colon, appendix and rectum have been removed. My old stoma hole was kept open to heal gradually.
My recovery after that surgery was slow. There were constant infections in the wound, and I felt exhausted all the time. I couldn’t do daily tasks without needing to go to sleep after.
I was made redundant from my job at the end of 2018 because of issues within the business. I started looking for jobs – but then I thought, ‘Can I go back to work?’ I couldn’t even do the washing up without feeling exhausted.
I started to question what my life had become, and that’s when I discovered pageants.
I was looking for a way to show that people with scars and disabilities need more representation.
A lot of people believe pageants are a beauty contest but they empower women to love who they are and the community is full of people doing good for others through causes and charity work.
In most national and international pageants, each contestant has an interview so the judges can get to know what they do behind the scenes. They then go on stage in different rounds to showcase your confidence, elegance and personality.
Getting up on stage is so much fun and I love getting creative by designing my own outfits.
If I’d seen people with stomas in fashion magazines when I was going through my first surgery, when they put my stoma in, I would have accepted it with a lot more ease at the time.
My first pageant was wonderful. Just hearing cheers onstage with my stomach scars on show, I felt accepted for who I was.
Now, I’m trying to use my voice to speak out for others – both those with scars, and those with invisible disabilities.
In the first six months of using my stoma, I’d get filthy looks from others for using disabled toilets because my disability wasn’t visible.
So, in August 2019 I created my own pageant, but specifically for those with disabilities that couldn’t be seen.
These days, I’d say four days out of the week, I can’t get out of bed because of chronic fatigue; and at least one day a week, my husband has to take me to the toilet because I can’t physically lift myself up.
I have to pick and choose what’s worth using my energy on, on any given day.
My mental health has been hugely impacted. I had a successful career; my husband and I were planning to have children. Now, we’ve come to the decision that, because I can’t even look after myself, there’s no way we could raise a child.
I feel like a burden; I feel guilt; and I feel grief for my past life. When I’m stuck in bed, I feel so low because I can’t live my life.
Not to mention, I’m still mentally scarred from those months of pain and multiple surgeries – I don’t think you ever get over something like that.
But I still want to live my life as much as I can, because I don’t know if there will come a time when I have to be tube-fed, unable to move at all.
I did my first international beauty pageant in Vegas a few months ago, and it was incredible – but I’m still struggling, even months later, because of the impact it had on my body.
I wanted to live that dream, though – for people struggling with scars and disabilities as much as for myself – and I did. I didn’t let my illness define me.
And I don’t intend to let it control me any time soon.
As told to Izzie Price
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