Frustration: When nothing feels like ‘good news’

Inspired by my 2019 post “Pain: When does Acute turn into Chronic?“

The shock on my face when I was told I was needed at SAU – our Surgical Assessment Unit – for a consult on a large peristomal hernia was a classic moment; right up there with coming round from a scope with a NG tube and needing a subtoal colectomy and my Infliximab antibodies being the highest on record for my hospital.

I’ve had some pretty low moments with IBD. And not because massively life threatening things have happened, but because it is one damn thing after a another for what seems like months on end. And this happens on a semi regular basis for the last nine years. Its been so bad, that some years we just joke about not planning anything in August and September because I always have surgery or admissions.

This year is no damn exception.

Even typing this, I am getting angry.

Angry at my dumb body and my dumb condition that has dictated a large chunk of my twenties to being in hospital or being very sick. And just as I am getting into a groove of feeling good, bam; carpet is whipped out from underneath me and we start the whole process again.

It’s not the fact I need surgery or that I am in pain with my hernia and obstructions, it’s the fact I am the bearer of bad news.

It never gets easier to tell my family I will be having surgery again.

It never gets easier to scrap all my plans for a whole two months.

It never gets easier waiting for a surgical date.

This time around, we’ve had more warning; a little indication that at some point it would need fixing surgically – hernia’s are manageable until they aren’t. And surgery is just as huge as proctectomy surgery – I had this done last March, which you can read about here – but comes with more risks due to current circumstances – coming out of a pandemic lock down, coming off steroids, being overweight and the fact it’s a peristomal hernia which have a 50% reoccurrence rate. It’s a tricky balance.

So I took it in my stride. I have been calm and collective about everything about this surgery, including when it’ll be and how I am going to get there – late July into early August – but in reality I am frustrated AF.

I’m tired of being the bearer of bad news, every single damn time, someone asks me about my health. It feels like a fucking sitcom some days, unreal and just made up; but this is it – this is my reality, sadly.

No, not sadly.

Because I do believe that we only get given as much as we can handle. This has to mean that I can handle a damn lot right?! What other explanation can there be?

So while it never gets easier for me to send a message or start a conversation with the words “I have some news, not bad but not great either… I need surgery, again..” I do know that I am going through what is necessary. I am going through what I know I can handle and that I am rising to these new challenges.

That is the perspective I am choosing to take.

But, it is not easy.

I am scared. I am fearful for life post op. I am concerned about being in hospital. I need reassurance. I need some guidance. I need to vent and talk. And while the NHS continues to fulfiill it’s demand during this pandemic, I want a chat with someone who can put me at least, and not on the day of surgery! I am weary to make contact with other patinets who have gone through this because I don’t want to worry or stress more.

So I have taken to journaling and writing out my thoughts and feelings when I get anxious or panicked.

How well this goes, it is too soon to tell but I am going to give it a good try before I am admitted, maybe even continue it while I am there; in some shape or form.

Do you have any questions or queries? Or just want to share your own experiences?

You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram

If you enjoyed this post check out I am Scared and that is Okay , I do this alone and Does Experience Make you Wise?