Sometimes; it just hits you, hard

How long does it take you to accept something? 

I’d be lying if I said I hadn’t be terrified to see my stoma. The first time I got to see it, I was high on morphine and was desperately trying to understand what was coming out of me and what I was attached to. PICC line? Check. PCA pump? Check. Catheter? Check. Abdominal drain? Check. Ostomy bag…? Check. I felt the outline of a bag underneath my gown, curious to see it but equally scared and nervous. How much of that was down to the drugs? How much of that feeling would stick around?

I thought the battle was over, but it was only just beginning.

 

My ostomy surgery happened late on a Tuesday night in August 2016. I wasn’t an emergency but it also wasn’t planned; it was somewhere in the middle. The middle ground… it was a long ten days of coming to terms with how utterly shit my body now was, what was needed to do to fix it, to get better and move the fuck on from all of this. I had suffered with Crohn’s Disease since September 2011 but the agony I felt prior to surgery was months and months of confused neglect.

Fast forward to being three months’ post op; back on my feet, feeling better than I have ever felt with the illness. I’m just getting on with life but I keep having these moments. The moments when you forget – just for a few breaths, seconds really – that you have an ostomy. It feels like chills going through your body. It makes you stop, wonder and panic what is going on, but then you realise; this is my life. This is it.

It’s most prevalent when going to the loo to tinkle and forgetting you won’t be doing that first, it’s now always second on the priority list because your bag is full and is pulling slightly on your abdomen; it needs emptying. It is that pulling that confuses you; it’s so new, so foreign, so difficult to get used to. You grieve for what you used to do, for what is muscle memory and second nature. In those moments, you wonder if you’ll ever get used to this new set of circumstances – the process of emptying the bag, changing it and looking after your skin and your output.

 

I’m unsure if my geeky nature has helped with my recovery, my acceptance and feeling comfortable with my new circumstances. Or if it’s just been time and the support. Why do some struggle whilst others thrive? Is this just human nature?

I took interest in how my body was different, how I needed to adapt to make the best of this. Losing your colon is dramatic and you lack a large and important organ. It’s going to be a long recovery. Things will be in flux for those first six months, you’ve got to find strength from somewhere to be okay with this. That’s not always possible, trust me. And it’s okay to feel negative about this bit of your intestines sticking out of your abdomen; don’t let anyone else tell you otherwise. Getting back on the metaphorical horse after a problem – be it big or small, it doesn’t matter – is the important thing.

Getting used to this new friend is not a five-minute job. Doesn’t matter if your stoma is temporary or permanent, it is all the same. You still have a stoma.

And those moments when you remember your old life, your old habits and you reflect on how and where you’ve come from; its overwhelming. But it is what makes you tough. It is what makes you.

ONE WEEK TO GO

Seven more days of having all my insides, still inside of me. Seven more days of this constant, terribly draining pain. Seven more days in this current chapter of my IBD life. I know surgery isn’t a magic or quick fix. I know I will be in pain afterwards, a different pain from the one I’m experiencing right now but I am hoping this will be controlled better and not be constant once I’m off painkillers. I know its a big deal for my body to be put through; the worst its been through is a flare up four years […]

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Sunday; the night before

Feeling nervous about tomorrow’s appointment at the surgical clinic. Want to have it all booked and sorted so I know what I’m working towards this Summer but really dreaded it finally being in black and white. *** I know this is the best option right now. In fact, it’s sort of my only option right now. I’ve failed everything else, and even though the combination of biological drugs have made my colon better in the past twelve months, my terminal ileum is a mess. And it needs to come out so I can move forward; in so many ways! With […]

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Just… *exhales and sighs*

I feel rotten today. I spent Tuesday afternoon onwards at my boyfriends house. I don’t spend alot of time there because of recent problems I’ve had with my Crohn’s, its easier to be at home. But we had a night and a day off together so decided to spend it together. And even though we have been together for almost 4 years now, I still don’t feel comfortable enough to just get up and walk to the loo and be gone, for sometimes ages; whenever he lives. Even when my Crohn’s is going through a good patch; which now definitely […]

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I’ve been feeling rubbish for weeks now but slowly getting through the days as they drag on, finish and move into the next one. I’ve been busy too, I’ve had hardly any time to really stop and take a long look at myself for as long as I can really remember. The beginning of a new school term started off with my ALQ kicking off in full swing and until half term – but really not until its completed in January – do I get a break, even a little one. And as the stress and the amount I am […]

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You think you know, but you have no idea.

I am scared. Alot of the time. I was sat on my bed earlier on, lying next to my boyfriend, trying to find a moment to just relax and be in the moment. It is so hard to just be in the moment. And this isn’t to do him a disservice, but it is so terribly difficult of late to relax and just be happy. Sure, I smile, I laugh, I even giggle, but I worry. A tremendous amount. Here is a snippet from the monologue inside my head: “Right. Work. Work. What if I need the bathroom at work? […]

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Humira #101

Now, I am not a completely stupid girl, I know that the medication I am on helps me; helps relieve the crohns symptoms, and let’s me go out in to the world and kick ass every day. I know from personal experience that everything else has failed – in one way or another – and this is my option at the moment. And what is a couple hundred £££ worth of injection if not brilliant for giving me back my life? So what, I have to actually stick a needle in my thigh bi- weekly? So what, if it takes two […]

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Today has been a rough day. Nothing major has happened, just lots of small things that have accumulated into something.. bigger. Had trouble taking my medication today – only my iron tablet – couldn’t swallow it and almost choked. Am home alone now until I go back to work and it was scary. My glasses are irritating my nose still, so back to my old pair. Found lots of hair in my brush today, and as pathetic as it sounds this part of my day made feel the worse, had a little weep. The physical parts of my disease have […]

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