Having to learn to live life in a completely different way takes a heavy mental toll” – Emily’s story
My story with Ulcerative Colitis began in early 2020. I was a fit and healthy 20 year old that was working as a group fitness instructor and had never dealt with any sort of major health issues.
I remember one week I started to experience a small amount of pain in my stomach area and didn’t think much of It. As the week went on, I started to experience more discomfort, so went to the doctor to be on the safe side. The doctor recommended I go into hospital to get some more tests done.
After a day of lying in the hospital , I was told I had a UTI. At the time this seemed shocking to me as I had never had one before and seemed to be in a lot of pain. Nevertheless, I trusted the medical professionals and continued on.
As the week progressed, so did my pain – to the point where I was having to leave work early and was becoming more Ill. I still remember the morning I woke up and ran to the bathroom to vomit and there was blood when I went to the toilet. I was on my own at home and rang mum to take me into the emergency department. To add to the chaos, it was also the beginning of Covid lockdowns which meant that my mum had to drop me out the front of the hospital and couldn’t come in with me. I was now dealing with this scary unknown on my own.
That day in hospital is a bit of a blur but I vaguely remember multiple people coming into my room after many tests and drawing different shapes on my stomach in a marker. I was then told that I needed to have surgery. I still wasn’t really sure what was happening. As a young 20 year old who had never had surgery before, and who had no family around, this was very confronting. I was also in so much pain at this stage that I could hardly process what was going on.
Coming out of surgery was a blur (not surprising with the amount of drugs I was on). I was told it was a 10 hour surgery and that if I had waited one more day, there was a good chance that I wouldn’t be here anymore. I was then told I had ulcerative colitis. I had never heard of this before, had no family history and had no symptoms prior to one week earlier. Apparently my bowel was completely disintegrated and was pretty much dead. I had 80% of my bowel removed and woke up with a stoma and a bag.
I still remember looking down at my stomach for the first time and having absolutely no idea what it was. I was the fit gym instructor that one week before and now had a scar running all the way down my stomach with about 30 staples. I could not even sit up in bed on my own. The recovery process was long … very, very long (to say the least), with every complication under the sun that you can think of. It was not just physically challenging. Having to learn to live life in a completely different way takes a heavy mental toll.
I spent many weeks in hospital after the first major surgery and had another three major surgeries in the weeks and months following (with many emergency trips back to hospital in between). I was given the opportunity to have a reversal surgery where I could get rid of the stoma. It required more major surgeries but it’s something that I am very grateful for, as I know this is not possible for everyone.
All this is not to say that things are all smooth sailing now. Ulcerative colitis is still something I deal with every day: managing pain, going to hospital every month for infusions, watching what I eat and always making sure I’m near a toilet. It’s been a long journey to get to where I am today, but I’m proud to say I’m back to feeling strong and fit and pushing myself to do things I never thought possible.
I know how hard and isolating it can be to go through something like this, especially as a young person, and I hope my story can help someone else feel not as alone.
I am always here to be a listening ear or support for whoever needs it.
You’ve got this.
Emily xx