Guest Writer - Steph

Steph from Imagine Being Different talks about Staying Strong...

Have you ever had someone tell you that you couldn’t do something? I’m sure everyone has, at some point in their lives and for me, that’s what living with IBD was like, “someone” always telling me that I couldn’t do the things that I wanted.

What do you do when someone says “You can’t do that?” You rebel. You stick up two fingers and you eat all the things that you shouldn’t, go out drinking, stay up late, all in the attempt to feel like a “normal” person. You do it, even though you know that bar of chocolate/curry/pint of beer that you consumed will keep you up all night and you’ll most probably end up sleeping on the bathroom floor because it’s just too much effort to keep on going back to bed.

Unfortunately I found out the hard way how hard it is to fight against IBD, that all the food that I shouldn’t have been eating, the late nights, made all my symptoms worse and put me in hospital.

I was diagnosed with Ulcerative Colitis when I was 19, I am now 24, and it was a really hard time in my life because I was at university. I was so embarrassed to have been labelled with a bowel disease at the age of 21. I didn’t tell many people about my symptoms at first, they just knew I was sick. How was I meant to explain that I went to the toilet more than 15 times a day, that I bled, that at very horrific times I couldn’t control my bowels and that I was exhausted constantly?

Slowly, I came to realise that there is absolutely nothing to be ashamed of. The only reason that people are embarrassed by this disease was because it centred around poop, and let’s face it, no one wants to hear or talk about this subject. In the beginning, I never spoke about the intricate details of my disease but I did start to open up more. Why? Because no one had ever heard of IBD and I wanted there to be more awareness.

Now, I talk very openly about my journey. I don’t tend to sugar coat things, even if it is disgusting because unfortunately, having IBD is a part of me and if you are grossed out by it, then I know that you’re not the kind of person that I want in my life. Also, the only way people will understand the shortcomings of having a debilitating disease is if I tell you the good, the bad and the ugly and more importantly how I’ve managed to overcome each and every single obstacle in my way.

First it was just being diagnosed with IBD, and then it was multiple trips and stays in the hospital. In 2010, when I was 21, I had an operation to remove my large intestine because I had a virus in my bowel which wasn’t letting the Colitis settle.

At first, it was a hard adjustment having a stoma bag at such a young age. I would feel self-conscious, that people would see it and judge me, and I was really embarrassed. Who poops on the side of their body?! Gradually, I came to terms with it and instead of hiding away I told everyone about it, and felt no shame in lifting up my top and showing people exactly what I had. It stared to become my party trick when I was little drunk “I hash a stoma bag, wanna see?”

 I started a blog as a coping mechanism, a space to be able to vent, to show people how I lived with a stoma bag in everyday life.

God, there were times that it infuriated me, like when I was in Rome and my bag split and leaked all over me.

I remember crying in the taxi and then laughing. Only that would happen to me, but more importantly, I didn’t let having a stoma bag stop me from getting on a plane and travelling to Rome in the first place.

The biggest achievement so far is that just before I graduated university, before I had my operations I decided that I wanted to travel Australia. I was saving up to go when I had my first operation and I had a decision to make. Do I go to Australia with a bag or do I wait until all my operations were over?

I decided to go for the reversal, and travel once I had my J-pouch.

Unfortunately, my J-pouch is very temperamental and I developed chronic pouchitis. Which is very similar to having colitis as the J-pouch becomes inflamed and bleeds. It seemed that Australia was not meant to be.

But I said from the very beginning of being diagnosed with Ulcerative Colitis that I would not let it hold me back. I’ve learnt to live with the disease instead of fight it, to listen to what my body is telling me. I’ve learnt that sometimes, I do need to take the time out to rest and it’s not me being weak, or missing out, it’s just me having a disease that sometimes can stop me doing everything all at once.

As I write this, I smile because I am in Australia, on a working holiday visa. It may not be when I planned to do it, but nevertheless I am here and I am the healthiest I have been in long time.

From personal experience, things do get better. You learn what is good for your body, for your mind and things do get easier in time.

My disease does not define me. Sure, having IBD has helped me work on myself on a personal level. I’m more outgoing, and I have learnt that I am one seriously tough cookie. It’s helped me to be more courageous, it’s helped me to reach out and help people and it’s shown me how unbelievably lucky I am to have so many people in my life that support me.

But underneath it all I’m still me. I just happen to have Inflammatory Bowel Disease.  At times the life I lead is compromised by it, but it doesn’t stop me from leading the life I want to. It just means I have to be flexible to the idea that things may change, and they may not happen exactly how I want them to but eventually they will happen, because I can achieve anything I set my mind to. 

Steph writes her own blog "Imagine Being Different" - be warned, there are lots of pics of her life in Australia, which are highly likely to make you jealous!!