So it was Tuesday night and the boyfriend and I were discussing the previous day’s appointment with my surgeon.
As much as I respect the logic and reasoning behind my surgeon’s need to keep me under his care and continue to test me – to make sure the Crohn’s is under control or if not, seeking the correct treatment option for me – but it has disappointed me. I honestly thought I was doing well, doing okay with mananging my stoma on my own, gaining weight, making more of my time at home and getting some light exercise.
Since then, I’ve been become abit more introverted; seeking comfort in my writing and music.
So why so blue Lou?
Mostly its because I just want to get back to “normal” and some of it is because I miss having money from working so I can go out and do stuff. This is the cycle I get myself into, quietly inside my head.
It really sucks.
But I do know deep down, that I am not ready for the working environment or lifestyle again. And it’s not because I am set in my ways of being off work and at home more often than not, but my body is not ready for a full time lifestyle of going to work, being at work, coming home from work. I am still not done recovering. I am also worried that I’ll get sick again too, if I don’t take this little set back as something potential dangerous and serious.
Now, I know I can live a good life with an active rectal stump. I can even live with a little IBD flare if I had to. But I keep forgetting that I still have IBD. My physical pain has resolved itself with my ostomy and my guts are finally in good working order. But I still have an underlying condition that needs a) treatment b) monitoring and c) respecting.
Yes, respecting my condition.
It’s an important part of living with and accepting your illness, I’ve found.
It is also the hardest part too and it take months, if not years to fully accept just how unpredictable and life altering this can be at times. I certainly learnt that this year; some would say the hard way but I don’t see 2016 as ‘the hard way’. I’ll be exploring that in more detail next week, in the closing week of this year.
I am angry that my Crohn’s Disease hasn’t disappeared with the appearance of my ostomy.
I’m also angry that I feel like it should have gone.
It’s just that I’ve been so well – maybe too well – it’s making me feel like I don’t have a chronic illness. It’s led me to feeling detached from the IBD community. I’ve found more comfort and solace in the ostomy community of late because they all just get how an ostomy feels and how it can really change your life. For some IBDers, an ostomy is the worst case scenario – I was certainly one of them when I was first diagnosed – and find it hard to connect with me in this way. This in turn has made the mental recovery from ostomy surgery with IBD difficult. It’s the only thing I’ve had any real issue with, that I would seek help with / for. That is something on going; another important topic for another day perhaps.
I don’t like feeling like this. Not at all.
I should be feeling elated that surgery was a success. And this small set back just means my surgeon has my back when it comes to cross the T’s and dotting the I’s in my post operative care. And so what I have to do an MRI scan again!? It’s not like I haven’t done them before – whilst being well and again whilst being very unwell – and I’ll do this one with pride. And so what I need my bloods checking every month? It just means we have more information to make an informed decision with. The same goes for the calprotein test.