6th June 2019. The 75th Anniversary of the D-Day landings, my 20th Birthday, and the day I started with symptoms of Ulcerative Colitis.
It was all very sudden really. I hadn’t been feeling very well for a couple of weeks. But like everyone, I just tried to push it to the back of my mind and get on with life and in my case, my university work placement.
I’d just returned from a holiday to Italy with my boyfriend’s family. I got the diagnosis the day after we returned home. My first treatment was a prescription for steroids. A further visit to my consultant a week later resulted in yet more oral steroids, then within a matter of days I was admitted to hospital for IV steroids, plus a dose of Infliximab. Nothing was working. I lost over two stone in just three weeks.
Luckily, I wasn’t alone. My boyfriend was really understanding and he, along with my parents, encouraged me to seek further help. Dad also suffers from Ulcerative Colitis and Mum has got Crohn’s. So, they both knew from experience what I was going through.
I can’t write too much about my time in hospital. Not only because it brings back painful memories which are now sort of blocked out, but also because I was so drugged up, so with the combination of those factors, I can barely remember a thing!
As it turned out, I’d been putting a brave face on a colon on the edge of perforation. I had to have an emergency colectomy to form a non-reversible ileostomy.
At this stage, I have a confession to make. I had stoma surgery without really knowing even what a stoma was! I was in so much pain and on so many prescription drugs it was a daze. I searched on Instagram for stomas the day of my operation, but mainly just saw stoma bags and it wasn’t until I woke up from my operation that I even knew what a stoma looked like.
For some people this could have been a bit of a shock I suppose, but I was so relieved to be out of pain, that I embraced my stoma from day one. There were plenty of people on-hand with great advice. That’s one of the amazing things about the stoma community.
I learnt a lot about different stoma supplies and trying different pouches to find the one that works for you. I met some amazing ladies who were on my ward, one of whom recommended Vanilla Blush to get pretty yet supportive underwear. All of them gave fantastic advice as many of them had all had stomas.
I was in hospital for a few weeks after with post op complications, ileus and pneumonia, but thankfully once these had settled I was ready to be discharged. I was lucky to have a few friends come to visit, including my best friend who travelled from Lancashire to Cheltenham to be with me, she is training to be a physio and gives the best foot massages - I can vouch for that! On one of my better days when I had a small window being disconnected from my TPN and IV’s, she pushed me in a wheelchair (complete with pyjamas, compression socks and central line) to a Chilli and cheese festival which was being held just down the road from the hospital. I couldn’t eat anything so it was probably not the best place to be but it was just so nice to be out and in the normal world.
I’ve never been someone who sits around all day watching boxsets. As soon as I got home, I started my recovery. The me+ Recovery Programme was invaluable. Every day I followed the simple conditioning exercises – all three stages - building up my strength and mobility. There’s no way I would have known what exercises were encouraged, without the instructor Sarah Russell’s support.
As soon as I felt well enough, I got back to the thing I love most, riding my horse (and eventually show jumping – but one step at a time!). The first time I got back in the saddle I was really weak so basically just wandered around for about 10 minutes, by which time I was exhausted! Thankfully it didn’t take too long to getting back into the swing of things.
I have really enjoyed fell walking with my friend this summer (between lockdowns!). We’re so lucky to live so close to the Lake District to enjoy scenic walks.
Above all, my stoma has made be more confident in my ability to tackle difficult challenges as I learnt more about my own determination in those few weeks of illness. Before I was in so much pain, but now I can focus on the future.
After achieving a First my BSc in Equine Science earlier this year, I’ve just started a degree in Veterinary Science at Liverpool University. In February this year my mum and I went on a skiing trip to France. I just made sure I was prepared with all my pre-cut bags and adhesive remover wipes (avoiding the need for scissors and remover sprays) along with other supplies, in my hand luggage. One thing I wasn’t ready for however, was emptying my bag with ski boots on, that was a new challenge but everyone has their own unique way of doing this anyway!
I’ve always wanted a small lap dog. So, when I came out of hospital in August, I got a little sausage dog puppy called Bruno. He’s the other love of my life, as well as my boyfriend.
He’s a farmer who’s worked all during lockdown, which since I’ve been shielding, means we haven’t spent any time together. He’s very supportive though and totally relaxed about my stoma. He knows it doesn’t define me – it’s just another way of going to the toilet.
Coronavirus has had a devastating effect on the world in so many ways. Trying to find a personal positive, lockdown was a great opportunity for me to try other stoma products as I was at home all the time. This meant I didn’t have to worry about little leaks and could give each a proper trial.
I find it hard to give advice really but what I would definitely say is that even when it feels like it is end of the world, you just need to step back and look how far you have come. Take is slowly and one step as a time, one day I was struggling to get out of bed, shower independently, change my bag, and then next I could do it- each thing you overcome it a little win. A stoma bag alone does not have to limit you, and for most people it is liberating. Remember it’s ok to have your bad days, but reach out to as many people as you can for support when you need it. Get in touch with the Ileostomy Association and if you want a wealth of free resources and for the award-winning Recovery Programme, remember to join me+.
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