“I own it” – Leyla’s story
Around mid-September, I was very sick for about two weeks. I had a really bad flu as well as an eye infection. Now I know it’s a symptom of IBD, but at the time I was very confused as to the cause. During that period, I couldn’t work or go to uni. Then I started bleeding when I went to the toilet. When that happened, I didn’t tell anyone until about a week had passed. It kept getting worse, and it got to the point where I couldn’t eat or go to work without having to go to the bathroom. Eventually I told my mum, who said that this wasn’t normal, and we went to the emergency department at the hospital. They suggested it was probably an infection. However, I continued to deteriorate – not being able to eat properly, and sweating while I slept. I couldn’t go to Uni or do anything, and I lost 6-7 kilos in a week. I went back to the Emergency Department, and underwent an urgent colonoscopy and gastroscopy. Immediately after the procedure, I was diagnosed with severe ulcerative colitis.
After the diagnosis, and being in hospital for two weeks, I was put on steroids, and other medications including infliximab. The latter improved my quality of life and living so much more. Obviously I still have my up and down days. Sometimes I feel really upset. But I feel so much more positive compared to when I first came out of hospital, when I just wanted my life back. I also felt very insecure on steroids because my face blew up and I put a lot of weight on. But I had to trust the process and that it was working, and I had to believe that the steroids would help me get better, because my UC was so severe. I was trying to stay really positive during that time. But while on the steroids I felt like dropping out of my teaching degree at Uni and not going to work. My parents told me to take a bit of a break, but over time – when I came off the steroids – I progressively felt stronger and more positive. I ended up staying at Uni, and am still able to do the things that I love.
After my diagnosis, I joined a Facebook group of people living with IBD, and reading other people’s stories helped me and my journey a lot. I feel comfortable talking to my family, and my close friends are really supportive. I think at the start I felt quite embarrassed because I was going to the toilet 10 times a day. But it is what it is, and I’m getting better. I’ve also had access to a variety of different healthcare services. I was seeing a dietitian when I first came out of hospital, and started eating gluten free for quite a while, because I was told it could help my gut. I had access to a psychologist while I was in hospital and for a short time after, so they could check in with me to see how I was going. This, in addition to the IBD clinic that I see on a six-monthly basis, has been very helpful.
I have more good days than bad days now. Obviously, there are still bad days, but nothing compared to how I felt before I was diagnosed. When I first came out of hospital, I just felt so down. I didn’t want to go to Uni, and I didn’t want to work anymore. But I feel I’ve overcome that, and that I’m so much stronger. I can still do what I love and see the people I love. I’m not scared to share what I have now. I don’t feel as upset about it anymore. I own it.