It Creeps Up on You

Diary Entry: 29.04.16

It's two weeks until my surgery.

I've finally had all my paperwork for my pre-op and my admission for the actual surgery.

It's come around fast. Faster than expected. Even though it was only a month away when I got told it was provisionally booked.

Planned anxiety.

That is what my first surgery was.

Lately, I’ve been finding myself getting less sleep because my head has been stuck in the past. I’ve been struggling to get myself focused on what is happening right now. I am lost in the memories of what I experienced last year.

In a physical sense, my surgeries have fixed me. But how much does the process of surgery affect you mentally? Has it fixed how I feel about being chronically ill? If anything, the physicality of having an ostomy – a badge of ‘honour’, a visual representation of my disease, something I can show to ‘prove’ my illness – has helped. I am sad it got to this but I am happy too. That conflict has the most mental impact.

I remember the days of being stuck in the bathroom, in agony, crying, unsure of how much more I would be able to handle, how much more I could take. When I would need to call it quits.

Nowadays, I am emptying my bag and its mere minutes. Even a change is 10 minutes’ tops. Ten minutes every 48-72hrs isn’t that bad; all things considered.

But how does that – cleaning my stoma, seeing it, looking after it, knowing I am different, knowing I am permanently changed, realising this is my reality – affect me?

Having an ostomy is not the fix some people believe it to be. I am one of the lucky few who has gone into remission and off medications since surgery. I don’t take this for granted at all. If anything, I am weary of this, it could change at any time. My previous IBD remissions have not last long so I am just enjoying the days as they come, at the moment. Even that is a mental battle; getting used to all these good days. They haven’t happened in such a long time nor for more than a few at a time. I am thankful for my current situation.

It doesn’t stop me from feeling lost, confused and downright sad some days. I keep my mental battled hidden, inside my head most days; trying to find distractions from these thoughts; keeping busy to take my mind to other places. I try and write; try and explain my thoughts in the written word. Actual words… they don’t come so easy. It’s still such a taboo subject. Not for fear of being judged but for the fear of admitting what I am feeling.

It is the lack of control I have over these thoughts. It started with one little memory creeping back into my head; when I realise the date or what I was doing last year on this day… and it soon spirals. My pre-surgery experiences were detailed in my blog and my diary. I know what I felt because I wrote it down, I relive it through my own words. It connects me back to my past; it’s like a flood – washing over me with such force, overwhelming and strong.

As I move forward, as the days go on and I get closer to last year’s “good days” I hope these memories move from being sad into feeling proud. I will hopefully see how well I have done – not that I don’t see that already – and how much of a difference a year has made. I will see how being different is a strength and it just one small piece of what makes me who I am, now. Not who I was.