My name’s Kathryn, I’m 33 and I’m from Warwickshire but I am also half Welsh. I’m a qualified psychotherapist but currently I am working for a charity as a support worker for people affected by abuse. I love animals, spending time with my family and binging a good a box set.
In December 2020 I started to see blood in the toilet. After some back and forth with the GP a colonoscopy happened in June 2021 and they were clearly worried as they put a rush on my results.
After 2 days I was experiencing urgency and pain when going to the toilet, and on the third day I was vomiting, something was seriously not right. I went to A&E and was admitted 11 hours later. The next day they explained to me that they expected Ulcerative Colitis; an Inflammatory Bowel Disease whereby an abnormal immune response causes your immune system to attack the cells in the digestive tract causing inflammation and ulcers in the large intestine (colon). Over the following 3 weeks I was extremely unwell. I was going to the toilet in severe pain 10-15 times a day, I was being sick regularly, I couldn’t eat and became malnourished and a lot of the time I couldn’t muster the strength to get out of the hospital bed.
Eventually, after being told I “probably would not need surgery”, a specialist surgeon came in and knelt by the side of my bed. He said, “Kathryn, I have to be honest with you now, you’re severely unwell. You’re pale white, your eyes are black and you look thinner every day. I’m so sorry but you need this surgery, you are risking your life without it”. I felt devastated, but also relieved that I was being told the truth.
I had the surgery. It was a subtotal colectomy which meant I was given an Ileostomy – my colon was removed and my small intestine pokes out of my tummy like a little button, and I wear a bag over this 24/7 to collect waste; this is called a stoma. About 10 seconds after coming round I told the nurse monitoring me
that I felt like a demon had been exorcised from my body.
Six weeks after going to A&E that Saturday in June I was home with a bag on my belly!
The physical aspects were most difficult at first because I had a hard time after my surgery. I’ll never forget the day I walked up and down the ward for the first time – I literally couldn’t understand how people just walked around normally I had completely forgotten how to use my limbs. But I did it, and all the staff and the beautiful people I was sharing a ward with who had seen the state I had been in cheered and clapped for me. I felt uplifted at that time and happy to be
alive.
When I got home the mental health aspect sunk in and I started to process everything that had happened. I was affected by how vulnerable I had been to life and I was suffering with really high anxiety. I had counselling through the hospital which helped me. I still struggle with my mental health but it’s much better now and I had mental health difficulties before the operation so it’s nothing new.
I would say the physical aspect was more difficult at first but then mentally things became challenging when I had the strength to acknowledge and address them. Having said that, I have done really well. I didn’t imagine myself doing normal things like spending time with friends, going on holiday, going back to work etc. but I’m living a normal life.
Social Media has been a big part of my recovery. Sharing my own stories and taking support from others, but supportive friends and family have been the biggest help for me.
I shared my story on my Facebook page with a photo and everyone I know has been so great. People have asked questions and I think that’s really important if people are comfortable to answer questions. Anything my friends and family haven’t know or understood they just ask me and that’s fine.
I think it’s impossible for someone without a stoma to understand what it is like to live with one. I guess I wish people understood how constant it is for me. How I am conscious of it 24/7 and it comes into my basic choices in life every day. What to eat, how long I can sleep, whether I feel comfortable going somewhere and how I will manage it. The other thing would be about getting “better”. People talk to me as if that exists. I am better in relation to UC because I have the stoma now, but I get blockages and can be poorly at times, and people ask me what’s being done about it or how to fix it. It’s just a part of having a stoma for some people and I manage it.
Advice for my younger self would be: “You can do anything”, “It’s going to be okay” and “Don’t worry, you can still eat spicy food!”
I truly believe that if I can cope with this then you can, because I was an absolute state about it in the beginning. It will become your normal, it is manageable, and please don’t be afraid to ask for help when you need it.