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Amy’s Story: Crohn’s Diagnosis

Hi there! I’m Amy and I’m 28 from Yorkshire. I have had symptoms of Crohn’s Disease since birth, Crohn’s diagnosis at age 7 and my permanent ileostomy (aka Stacey Stoma) formed August 2011. I am going to tell you a little bit about one challenge I have faced and still face in particular and how I work to face and deal with it in my daily life.

Due to me being quite tiny as a person and having my surgery quite young (aged 19), I have a very small and cute stoma which as a consequence can be very narrow, sometimes making it hard to pass certain things. The skin around my stoma, where my stoma comes out my stomach, continuously tries to shut itself and heal, almost acting as if my stoma is a foreign opening that shouldn’t be there. I guess this isn’t far from the truth for a “normal” human body, but after nearly 8 years, you would think my body and my stoma would have become friends!

This has led to many hospital visits and medical dilation, where one of the surgeons has had to medically widen it. I talk about this in more detail on my blog but this has led to me having to widen my stoma myself twice daily at home, every day. This has been a big adjustment to my routine.

When you first have a stoma, your life is turned upside down from suddenly having to adapt to a new life, full of things you wouldn’t have to have considered pre-stoma or been as aware of. However, I didn’t really have a quality of life before my stoma due to being so ill, so I was definitely up for embracing a new routine. I remember my stoma nurse saying to me that one day changing my bag would just become as familiar to me as brushing my teeth and she was definitely right about this!

Dilating my stoma twice daily has been a lot harder to come to terms with, and I still get my days where I just want to feel at least half “normal” and get in from work, throw my pyjamas on and jump into bed without having to go through that sometimes painful and often messy routine.

Adapting my daily routine over the years to cater for my stoma has definitely required me to keep as much of a positive mindset as I can and just crack on with it to the best of my abilities. One piece of advice I always give to other ostomates and use myself incredibly frequently to keep me pushing on is that you own your bag, it doesn’t own you. I think it is very important to keep that in your mind and focus on that regularly, specifically on those harder days. In fact, sometimes it’s okay to feel down about things too and not be hard on yourself for it. Your stoma doesn’t define you and I’m sure if you sat and made a list you could list a number of things it has given you, such as eating without pain or enabling you to leave the house without worrying whether you’ll make it to the nearest public toilet in time, or where that public toilet even is!

Life with a stoma is one big adventure but it is definitely an adventure worth travelling on. I wouldn’t be here without my stoma and for that I will be forever grateful!

– Amy

You can visit Amy’s blog here

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