Amy shares her story of living her life with a stoma…
Being Diagnosed
I’ve suffered from stomach cramps, diarrhoea, and urgency for the majority of my teenage/adult life and for years was told I simply had a ‘nervous tummy’. At the age of 20, after passing quite a lot of blood and suffering a lot of pain, I was sent for an emergency colonoscopy and from that I was diagnosed with a form of inflammatory bowel disease called Ulcerative Colitis. There is no known cause of the disease, and therefore no known non-surgical cure. It’s a lifelong auto immune disease where your immune system is working in overtime and attacks the healthy cells in your body. There can be periods of remission and then, without warning, it can ‘flare’ up again.
I was, luckily, in remission for 7 years without the need for any medical intervention but unfortunately in 2017 it came back with a vengeance. Over the following 18 months, I tried every medication available including infusion drugs that are commonly used in cancer treatments, IV steroids, a variety of tablets, enemas and suppositories. All the treatments I went through came with their own side effects, some of which so severe they came with a ‘black box’ warning on them due to causing leukaemia, TB and other forms of cancer – but I was desperate as the pain and suffering was intensifying. For months I put off going to A&E as I was determined to manage it on my own, until I got to a stage where I genuinely couldn’t cope with the physical and emotional agony any longer. It was beating me.
Having Surgery
Ever seen the film Alien and the scene where the alien rips its way out of John Hurt? The writer, Dan O’Bannon, suffered from inflammatory bowel disease and the pain in which he suffered inspired that scene.
After a week in hospital not responding to any treatment, I woke up to a surgeon sitting next to my bed saying it was now time to discuss surgery as my bowel was close to perforation. I’d exhausted all of the medications available and my only option would be surgery to remove my colon and create an ileostomy that removes waste from my body. Having gone through 18 months of both physical and emotional hell I signed the consent forms knowing this wasn’t really a choice, I’d deteriorated to the stage that this was the only way I could be saved. I was put on 15-minute watch overnight until I could be wheeled into theatre first thing in the morning as I was deemed high risk.
I remember being wheeled down into the waiting area for theatre and, as it was early morning, I was alone, vulnerable and petrified. I’d never had surgery before and I just wanted my mum! The next thing I remember was waking up in a ward and I could hear my mum and my sister’s voices telling me if I was still tired I should go back to sleep. I could feel a dull ache all over my torso and, feeling instantly comforted and safe knowing they were by my side, I fell back into a morphine induced sleep.
Recovering From Surgery
The recovery from my surgery was particularly difficult. As my colon had been so ulcerated and inflamed it had coiled in on itself making keyhole surgery an impossibility so I had open surgery. My wound then became infected with E. coli and my stomach shut down, which I’m now aware is common after surgery, causing me to be very sick and requiring an NG tube up my nose and into my stomach to drain the bile over 4 days. At this point I felt particularly low. I looked down at my body and could see a massive scar down my stomach, a stoma with a bag to the right of my wound and staples everywhere. I struggled to come to terms that this was my body. That this had happened to me. After another two weeks in hospital, rebuilding my strength and learning how to change my own stoma bags, I was finally allowed to go home.
Life After Surgery
The first few months of adapting to my ‘new’ body were particularly challenging as I struggled to find the courage to change my bags independently and relied on the support of the district nurses and my mum. It was difficult to cut my own bags accurately as my stoma changed shape and size whilst it ‘settled’ down following its surgical creation. Picking the bags that I wanted to use was also overwhelming as there are many different shapes, sizes and colours available to ostomates. I went through the process of trialling each one – similar to trying on clothes in the changing room before you decide to buy! Thankfully, all my stoma supplies are free and delivered straight to my door.
Gaining Confidence
However, as the days passed by and with the support of my family and close friends, I was soon getting back to the old me. Although recovering still from surgery, I wasn’t in even half as much pain as I had been for the 18 months prior to it. I wasn’t stuck in the bathroom crying out in agony. I was able to live a ‘normal’ life and soon became able to change my own bags more confidently.
Life With A Stoma
Now? Two years on I could remove, clean and put a new bag on with my eyes closed! I don’t have to be near a toilet every minute of my day. I do still struggle to accept my stoma and can find it difficult to talk about as I don’t feel like many people will understand or even want to as, to some, it’s still very much a taboo subject even though everyone poops! Although I am very grateful I can go on and live a pretty normal life, I wish us ostomates were represented more in the media so that it wasn’t such a stigma. It has also surprised me just how many people actually live with a stoma and it’s not until you confide in someone that you have one that they share they know someone else who does.
Having surgery has not completely ‘cured’ me as I still have active disease in other parts of my body. I still bleed and pass mucus from my rectum, I often have ulcers in my mouth and up my nose, suffer from fatigue and, some days, my joints inflame and cause me pain. BUT I am alive, I have been able to secure a new job, which I love, when I previously couldn’t have managed, I can go anywhere and enjoy myself with my family and friends, I can work out at the gym rebuilding my core strength and I can look back and be proud that I fought the alien and I won!
