My name is Cara, I’m 22 and this is my stoma story!
I started feeling unwell in July 2019. The first doctor I saw didn’t take me seriously and just handed me laxatives. I knew something wasn’t right but didn’t think much of it to start with. That was until I saw blood in the toilet bowl. I panicked and had no idea what to do. Coupled with the anxiety of the unknown and seeing blood every time I went to the toilet, the grinding pains in my stomach only got worse and worse. I couldn’t sleep; spending my nights on the toilet; just praying for the pain to end. There is a history of bowel cancer in my family and I just couldn’t bring myself to sit opposite a doctor and hear that I too was in that position. Finally, I found the courage to see a doctor. After three months and three different GPs, I was finally diagnosed with suspected colitis in October 2019. Even though I had no idea what that meant, it felt like a relief to have a doctor take me seriously.
In the months waiting to see a specialist, my condition only got worse. My GP put me on a high dose of steroids to try and control the inflammation and iron to combat the blood loss. With every passing second I could feel my body getting weaker. 10 days of pure agony, I dragged myself to a routine GP appointment. Sat opposite my GP I couldn’t believe what was about to happen. “We need to admit you to hospital. Now.” Words no one wants to hear.
So I reluctantly packed my bags. Walking into hospital felt was terrifying. I had to hand myself over to a troop of doctors I didn’t know, to investigate a condition that hadn’t been confirmed yet and one I knew nothing about. The hospital smelt strange and completely unfamiliar. The ward was noisy and chaotic. Patients, visitors, doctors and nurses all running around with such a purpose. And here I was, feeling lost and alone in amongst the hubbub of my new home. From the second I sat on the hospital bed, everything happened at 100 miles an hour. The hospital confirmed my GPs earlier assumption. “You have Ulcerative Colitis” he said. I started blankly at the stranger in scrubs. It didn’t really mean anything to me but finally my pain had a name. I spent a month in hospital. Living in amongst the madness. Every day was a new test, new medication and new nurse poking and prodding me. To my dismay, the disease was so advance my doctors needed to throw the whole kitchen sink at it, in an attempt to stabilise the condition. I had a blood transfusion, three infliximab infusions, countless iron infusions and IV steroids.
But slowly, my body was giving up. I’d lost 2 stone in 3 weeks. My hair was falling out, my skin grey and my body painted with bruises from every cannula, blood test or IV line. I was a silhouette of my former self; so sick I don’t remember how I felt. The only thing I do remember is I would’ve taken anything to feel better. Things only got worse and I deteriorated to a life threatening stage. The medication felt like thrashing lighting in the storm I was already experiencing. I wasn’t allowed to try any more medication because it just wasn’t working. So surgery became my only option. I didn’t fully understand colitis, let alone a major a surgery I was too exhausted to comprehend. But I put my faith in my medical team and thank god I did. When they said I would wake up from surgery and feel better; apart from the surgical strain; I didn’t believe them. But as I came round from the operation, that grinding pain in my stomach was no longer there. Maybe it was the morphine, but they were right – for the first time in months I truly felt ‘better’.
I spent 5 days in hospital after the operation and finally I was able to go home. Able to get a cuddle from my boyfriend and being around my family was the best feeling in the world. And just in time for Christmas. I’m now six months post op and I’ve learnt so much about myself for enduring all this.
Mentally I have struggled. I have had some really low days. But I know it’s a process and it takes time. Life is strange for all of us at the moment – being subjected to a pandemic. But I’m in a completely different place mentally to where I was just 6 weeks ago. I’d describe the feeling as grief. I do grieve for my old body and life before I heard the words “Ulcerative Colitis”. Looking back, I feel lucky to have only suffered for five months – which I now know was a severe flare up. Ive seen stories of others suffering for years. However, I’ve had to accept a lifelong illness, a month long hospital admission and body transforming surgery in one go. And like all grief it never goes away. Just an empty space you learn to live with and accept.
I know I’ll always be learning new things about my body, but for now I choose to focus on the positives that have come out of my operation. My hair is starting to grow back, the moon-face has finally gone down. I can leave the house and not worry about the toilet. During lockdown I’ve been going on 4 hour walks with my family, with no problems. Nine months ago that wouldn’t have been a thing. I feel more body confident than ever. I am in awe of my body and what it has been through and survived. I dress how I want and eat so much more than I could when the colitis ravaged my colon. And now I’m a part of a community which makes me feel so empowered and not alone.
In learning all of this, I’m excited to see where life will take me with my new body.
Follow Cara’s stoma story on instagram – @colonlesscara