I’d been home from hospital for a few days, and the discomfort was slowly starting to ease up but I was still finding it hard to do simple things like walk up the stairs without feeling like I was about to pass out! But I was slowly getting used to being at home again. One of the best parts was all the food in the cupboards and the comfort of my double bed! I’d always heard how uncomfortable hospital beds were but you never truly realise just HOW uncomfortable they are until you end up spending 26 days straight in one… It was lovely to have clean sheets as well. I think the whole time I was in hospital, my sheets got changed four, maybe five times? Not the nicest of things…
Being home meant I could feel clean and shower when I wanted to, although that was a big challenge. We have some steps at home mainly used for decorating, but they were the perfect size for me to sit on in the shower. That was until I started to put on weight and my bum got too big, but I’d been so upset I’d lost my bum I didn’t really mind! Even though I was putting on weight, I was still lacking muscles so Mum continued to help me shower most days. I had to be careful of my wounds though. I had four on my tummy, and then my stoma. My wounds weren’t stitched together, they weren’t even glued. I obviously don’t remember the surgical instruments being removed but they removed my stomach drain (bikini line plaster) whilst I was in intensive care and it made my stomach churn! I hadn’t realised how long the drain was, it literally went from the scar, all the way to the other side of my tummy and I was rather surprised they just put a plaster on it without anything to keep it together! So because my they were all just left to heal by themselves, I couldn’t get them wet which was rather difficult. Mum and I resorted in covering my tummy in surgical tape to keep all the plasters clean, and then taping a bag over my stoma as I didn’t know how waterproof the adhesive was. Now I’m not even bothered by it getting wet, but I have to admit it is a pain having to dry the material from my stoma bag with a hairdryer most days if I’m in a rush…
At first it was weird having to change my stoma – just looking at it without a bag on it made me want to be sick. I’d emptied it plenty of times in hospital and had figured out what worked best for me, however there had always been a nurse there to help when I changed my bag so changing it by myself took some getting used to.
As I was still really weak, Mum helped me change it at first. I vaguely knew what to do, but I couldn’t remember what the nurses had said as everything was a bit of a blur but at least Mum remembered the order of what to do and the useful tips they’d given me.
I was changing it every other day as I’d found the beige Coloplast bags didn’t last much longer. I also still had 18 stitches (ish) which needed to be kept as clean as possible as I was still healing. I was told the stitches would just fall out when they were ready to as my body would heal and reject them, but it was too soon for that to happen just yet. I also didn’t want any leaks. By this I mean quite literally leaking from the bag. The bags are stuck to the outside of my tummy with adhesive, and if they re not changed regularly then your output (poo) can erode away at the adhesive. Obviously if there is no adhesive then there’s nothing keeping the bag stuck to your tummy and you can quite literally shit the bed as the saying goes! This was something I unfortunately found out a few days later when my stoma leaked as I was watching tv and it went all over me (obviously) and my bedding. Can assure you that experience wasn’t fun!
I’d also been told that if your output had constant, direct contact with your skin then it could cause a rash and irritate a fair bit. I was also told what the ideal consistency was as well, however it would change on a daily basis depending on what I was eating or drinking. Again, there’s only so much you can be told until you just have to just go through it all and learn for yourself.
One morning I was changing my bag with Mum and I felt the same dizzy spell coming on that I’d experienced in hospital. I felt too hot, despite only wearing underwear, but I had goosebumps suggesting I was cold, but I was also sweating. My eyes rolled back into my head, my cheeks went bright red, but the rest of me looked washed out and I needed to be sick. Only trouble with needing to be sick was the fact I didn’t have any muscles to help me be sick so I was just heaving. I’d had banana and Rice Krispies for breakfast and all I could taste was the banana coming back up, it was hideous. Eventually I’d managed to make myself sick, but I had to stick my head between my legs and get gravity to help me because I had no tummy muscles. They’d wasted away from being bed bound for over a month, and also from being cut through in order for the surgery to happen.
I’d tried to explain to Mum that this is what had happened when I was in hospital but I couldn’t quite get my words out properly. I think this lasted for 40 minutes or so, I don’t really remember. One thing I do remember though is how scared and worried Mum looked. It was horrible, then as quickly as the episode came on, it went again and I was fine afterwards.
Thankfully, it didn’t take me an hour to change my stoma all the time, but I was worried at first that this would be normal life for me. As I’m typing this now, it’s April and I’ve got it down to 10 minutes or so – providing it behaves yourself. By that I mean, it doesn’t decide to poo everywhere whilst I’m trying to clean it.
There is some confusion that I have control over my bowels now, but this is not the case. Your small and large bowel are working constantly, the muscle movement is involuntary however you do have control over your rectum which is how you can control going to the toilet. With my digestive system now finishing at the end of my small bowel, this means I do not have that control which is why I must wear a bag all the time. Without it, I would literally be pooing over everything! All day, everyday!
So as long as Sally the Stoma behaves herself, it no longer takes me an hour to clean and change my bag. But obviously the human body is full of surprises ad I do have days where I’m heard shouting at my tummy because it will not behave.
However I’ve learnt that shit happens and life goes on, quite literally sometimes!