Every time I hear my name called in clinic my stomach does a little lurch. You think I’d be used to it now after going frequently in my four years but no. I still get butterflies.
I still get slightly nervous as I sit in the room and wait for my gastroenterologist/stoma nurse/surgeon (delete as appropriate.)
A knock and then there he is.
I almost expect Godly music, a choir and some holy light to grace his presence.
I can’t help but smile when I see this man, he has helped me through my very worst and I can’t help but feel I owe him my life in a weird way.
“How you doing? Better? Worse? The same?”
“Getting worse” I reply
He comes over and examines me, it becomes routine now, he doesn’t even have to ask.
I hear a deep disappointed sigh
My heart leaps into my throat.
This is the one man I don’t want to hear bad news from.
I follow him into his clinic room and I sit, my breath is held, almost as if breathing might change what he’s going to say.
I hear him remind me about the figures he told me when I very first considered pouch surgery. The 80% chance that all will be fine and the 20% that I’ll have problems.
I hear him say that I’ve fallen into the 20%, that evidence suggests that people with pouch problems early on go on to have larger complications down the line.
I fade out slightly as if someone has turned the volume down as he says that he doesn’t understand why my pouch is misbehaving as there is no signs of pouchitis.
Everything is muffled and I can hear my own voice screaming that it wasn’t meant to be like this. I was meant to be in the 80% all fine and dandy, living my life without a care in the world.
I’m not meant to be told that there’s a chance I’m going to be on antibiotics for a long time, that my body could eventually get used to these and it won’t work any more.
I dare not ask the question of what happens when they stop? What happens to my pouch? I was too scared for the reply to be “You’ll have to go back to a stoma”
I tune back to discuss what my options are, take the course of antibiotics for 6 weeks, have a break for 4 and then have a pouchoscopy to see where we go from there.
Notice how my first thought was “Damn I can’t drink during Christmas!” (these bad boys are so strong that alcohol will make you sick)
Chances are I’ll be on a low dose of antibiotics for a few months.
There’s a slim chance that the pouch may sort itself out, small chance but you never know.
I smiled and thanked the surgeon, wished him a nice day and left.
Every step I took I could feel the tears starting to form. I wanted to sit, I wanted to break. I’ve had enough I don’t want to do this any more. I just wanted to sit and howl.
I rang my mum, my voice wavered and cracked but I didn’t break.
I have come too far for this to stop me now. Also it wouldn’t be very British of me to do that would it? Have you heard of a Brit break down in the middle of a hospital and scream WHY MY? WHY GOD? WHYYYYYYY! arms stretched, snot tumbling down, other people walking in the opposite direction because the raw emotion was too much? Nope I didn’t think so either.
Its not what I expected, its not the best of news and yes today all I wanted to do was to curl up in a ball and pull the duvet over me but I didn’t.
There is no way in hell I’m going to put my hands up and let TinTin win this battle.
Sure he is testing my patience, like the other night when I was in so much pain, crying “I hate you, you bastard”, I had to get down on all fours and stick my bum in the air as it was the only way I didn’t feel like I was going to explode and be sick.
Sure he’s throwing a bitch fit and making my life a misery right know but I know that deep down I will have the last laugh, because I will win this fight.
There will be a time where my pouch and my immune system will be able to sit in harmony and have a beer and be like “do you remember the time when…”
Till then I’m just going to keep on smiling.