Know what inspires me the most?
Other ostomy patients, other IBD patients. Those people who have a connection to me once I share my own journey.
I met these people last week at a Coloplast Care day. I spoke about how I came to have my ostomy, my IBD history in brief and how life has been since surgery.
I tried to follow my written document – you can read it here – but I ended up going with a flow of just my own words, right from the heart. Speaking in this way did make me unexpectedly tearful because even though I’ve been speaking about my journey in sections the last couple of months; in posts on my blog, remembering it in all of its entirety has been difficult to process. But it’s a grieving thing that I needed to do, I needed to get up there that day and talk. I needed that therapy, that catharsis.
It was freeing, a lot like my surgery has been.
I spoke with passion, positivity and I hope humility.
A few members came to talk to me after wards and expressed how bloody brilliant and brave it was to speak as candidly as I did. That got me smiling through some tears because I’ve never done it before and I wanted to be good; I wanted to express just how unashamed I am of being an ostomate, it is a badge of honour I wear with pride. It might not be everyone cup of tea to speak of a stoma like that but I do because it is. My reality is completely different to what it was twelve months ago, even eight months ago, in between surgeries.
Speaking about those few months last summer was the hardest. I hadn’t truly realised just how fucking shit things were until I was given the gift of hindsight. My journey is mine and it is special to me. I don’t wish it was different, it happened because I am strong enough to take it. Both in it happening and being able to call it quits when I did.
Having that one to one connection, that bond between ostomates is why support groups need to keep going. It’s why one to one peer support is fundamental. It’s why appreciation and reflection is also important.
Why do you go to hospital? Is it because you’re in so much pain and need relief and answers? Well you’re like me then, only going when it is beyond your threshold and you need help. The pain was unreal and unbelievable earlier and every time I’ve been come into hospital I’ve always experienced pain; they are forever intrinsically linked in my head. So now, it’s incredibly hard to think I can still be here without feeling any pain. I feel quite fraudulent. Added to that, I am in the same room from my last admission; my ostomy surgery, all that pain, blood, fear, shock, disbelieve. I am […]
13.06.16 I stared down at the box of tablets in some sort of disbelief. How did it get to this, needing to take anti depressants? It’s week five of my post op recovery. I had surgery in mid- May on my bowel and to remove a cyst on my ovary. Things were going well; I was healing from my incisions and I was getting back to a normal diet. Then two weeks ago, things took a horrible turn. I was sick. On and off for 36 hours. I honestly haven’t felt well since. No one can tell me if this […]
“I’ve learnt that this learning experience isn’t over and won’t ever really be over. And that is okay. I am fine with these challenges because I know I can do them, whatever my stoma throws my way.” Extract from my November post “What I’ve Learnt After Three Months with an Ileostomy” *** Six months. Half a year. It feels and sounds like a huge amount of time. And to really sit and think about what I was doing six months ago – lying in a hospital bed, attached to so many tubes, waking up from surgery to create […]
So last week I travelled alone. Not unheard of right? Some thing people do all the time; without hesitation, without thought, just ordinary and normal. Not for me. I’d always loved travelling – I spent a year living and studying on Vancouver Island, Canada as part of my degree, I travelled to and from university a lot and I generally got out and about when I could. But when the IBD struck me in late 2011, it did throw a spanner in the works; I suddenly saw all the things I could no longer do because I had to be ‘careful’ and […]
Yes, it’s already been THREE MONTHS! Can you even believe it?! I know that three months is nothing in the scheme of things, and even three months out of 2016 doesn’t feel like an incredibly long time, but to me three months is a lifetime. When things don’t go right or you have problem after problem, even a week can feel like an eternity. That’s what I was experiencing before I had my hospital admission in August. I was trying my best to deal with what was happening to me at the time – codeine addiction and subsequent withdrawal […]
They “prep” you for surgery; you hear that a lot in the weeks and days leading up to an operation. Medically, you should be fit enough to withstand the trauma your body is going to under take. You should be aware of the potential dangers, prepare yourself for things to be different than what you’re expecting, what you’re thinking could happen; even if you’ve had surgery or this surgery before. What about mental preparation? Do the doctors ever prepare you for surgery? Apart from what I’ve mentioned above, how does anyone prepare for surgery? I was a novice to it all in May, there […]