This morning Winnie (my temperamental stoma) decided she’d had enough of being
covered up and trapped in her bag and decided to make a break for freedom. At the time I was happily soaping up in the shower, desperately trying to avoid the red raw skin which surrounds my ileostomy op scar and mucus fistula bag, but none the less enjoying the refreshing feeling of washing off the night’s grime in a nice warm shower.In my slightly hungover haze (a few glasses of wine at Andy’s neighbour’s) I was blissfully unaware that as the hot water poured down over my ostomy bag the flange (horrid word) was gradually breaking away from my skin.
Suddenly all I felt was this heavy feeling and then the bag starting to peel away from my skin. Water poured onto my stoma, who out of fright of the weight, warmth and speed of the water, started to shrink inwards in the fashion of a startled turtle popping its head back into its shell, while I scrambled to hold onto the ostomy bag which was rapidly filling with water and becoming heavier and more water-logged with every passing second.
It was the most stressful shower I have ever experienced. Ok, that’s if you don’t count the handful of showers (if you can call them that) I was subjected to in the days following my ileostomy operation, where I was dragged to the assisted bathroom by a poor and unsuspecting student nurse before being pretty much physically forced to strip down to my birthday suit, before being popped on a plastic garden chair and hosed down at arm’s length. This would be the first time someone other than my nurse or surgeon saw my ostomy bag. To say I felt humiliated as the rather young and pretty nurse soaped my back and gave me shower gel for my ‘intimate’ parts while she prattled on about reality tv and student housing in an attempt to put both me and her at ease would be a severe understatement…I think the word traumatised is more fitting.
I don’t think I will forget the poor shaking nurse who was made to take on this task on her face day on-the-job. As she helped me remove my hospital gown (that I was still in even though it was days after the operation) and revealed my bony skeleton, which was scarred like a drug addict from the amount of nurses and doctors who had taken my exhausted state as an opportunity to use me as a human pin cushion, I saw her face actually freeze into a transfixed look of horror and disgust. I was actually appalled for her, it was like I’d witnessed the moment that she realised she would have to do this to other people (both older, wrinklier, and with various scars and bits of machinery and stomas hanging out of them) for the rest of her life, and she’d just realised that this wasn’t what she’d signed up for. But her fleeting revulsion aside, she handled the situation miraculously well and she managed to do a really good job in the end washing away days of blood, dirt and god knows what else…and surprisingly she quickly became my favourite nurse and I like to think I became her favourite patient, as we shared stories of student days and nights out in Chester.
I have to admit that I had a feeling Winnie was going to try to make a bid for freedom today. To date she has had several failed escape attempts, which have been foiled at the last second by myself, who acting like a watchful prison guard has spotted every attempt Winnie has made to scale her prison cell at the very last second almost by chance as my inner warning alarm has triggered and I have checked on my bag just as the adhesive has started to break free. This hasn’t meant that she hasn’t enjoyed a few leaks. In fact over the past couple of days there have been more leaks than I have cared to keep count of. So far I have mostly been lucky and these have happened in the safety of my own home where I have enjoyed the liberty of having my changes and supplies as well as my own clean bathroom to plug the cheeky rascal before things have got out of hand. I like to think that I’m handling it well but to tell you the truth I’m living in constant fear of my first public leak and for that reason I am avoiding white clothing or (I know this is going a bit too far) standing on white carpets for fear of a poo related incident.
The reason for these leaks, which seem to come at least twice a day, appears to be that the flange puckers every single time I try to sit down, crouch, cross my legs. You see my skin is now so raw – as my picky body has an allergic reaction to each and every ostomy product going – it looks like I have set fire to it and let it burn off (my stoma nurse says I look like a burn victim) and the bags are simply refusing to stick to the shiny surface. I’ve tried different makes of bags; bags infused with honey, seaweed; bags which are like sink plungers sucking on your skin; small bags; big bags, but nothing will stay on for more than a few hours, or will stay only if I use meters of tape in an attempt to secure the gaps, but either way the poo will gradually make its way through anything I try to put in its way. And if it’s not the bag it’s the wound dressing leaking, or the fistula bag exploding as it fills up with water in the shower.
To tell you the truth I’m sick of it all. My skin is so itchy from leaks and allergic reactions I must look like a withdrawing crack addict as I lie in bed holding my hands inches from my chest willing myself not to itch. I feel like taping oven mitts to my hands to stop myself having a cheeky scratch, as I know if I start I won’t stop until I’ve scratched away my whole stomach and look like something from Alien. In fact when the nurse was wrapping my wound up in swathes of bandages, leaving me looking like Michelin Man, she commented on the way my feet twitched uncontrollably as my body fought the overwhelming instinct to scratch scratch scratch.
So if any of you out there have any advice at all please please please comment below. I really need help before I give into the devil sitting on my shoulder who is constantly waving his pitch fork and whispering “come on…itch it…go on, you know you want to!” HELP!!!