I’m always asked if my life has changed since surgery and I immediately think:
“No, it hasn’t changed at all…’’
But that’s definitely fake news; I’m missing 5 feet of intestines!
Pre-Bag the only memories I have are shrouded in a dark cloud of pain and discomfort; so living with my ostomy is leaps and bounds better than that. I’m no longer in pain. I don’t spend all my time in hospital and I’m definitely living my best life. So when I’m asked if my life has changed, I find myself comparing it to the days riddled with suffering, purely because I’ve completely forgotten what my life was like before UC took over my body. Doctors appointments and hospital trips have become as normal as going to the shops. Not to mention, I can’t remember what it feels like to poo normally without pain or blood left in the toilet bowl. Life has changed but ultimately for the better, because even if I don’t have a colon anymore, I wouldn’t be here without my bag.
Everyday life with an ostomy is different; there aren’t many people who start their day by handling their intestines, but it’s become so normal that I forget how abnormal it actually is (and I don’t mean that in a bad way).
There are small changes, like how I sleep. I have to be wary if I sleep on my stoma side by placing a teddy bear or pillow just above my bag so I don’t roll onto my stoma. Alongside, waking up once during the night to empty my bag. That may sound annoying but it’s better than my UC-infested-colon days. Back then I slept on my bathroom floor, wrapped in towels because I used to wake up every 30 minutes drenched in a cold sweat. Now, I just empty my bag once; this is both more comfortable and means, I avoid the risk of waking up in a puddle.
One big change is that I plaster my life all over the internet. I’ve met so many people thanks to my blog/Instagram and I’m truly warmed by the sea of support from people across the globe. I’ve had the chance to be apart of so many amazing campaigns and if it wasn’t for my bag I wouldn’t have the confidence I have now. I get to help so many people going through the same thing as me and show the world what IBD and stoma bags actually are. In the two years I’ve been diagnosed awareness for IBD and ostomy bags in young people, in particular, has grown significantly; the amount of people who feel comfortable to talk about it now is exponential. Illness can be a very lonely place, but when you have a global support network at the click of a button, it can be the only thing that gets you through the day.
Now I’m missing a rather large piece of my intestines this comes with a routine unlike any other. Every morning I change my bag: *Watch it here* I wake up and take the old bag off, jump in the shower and pop a new one on when I get out, and the success of my day normally starts here. If I have a messy bag change, there’s a 99.9% chance I’ll be in a rubbish mood because I started the morning with poo down my leg. And no one wants to start the day with poo down their leg. I’ve worked out that the success of my morning bag change is down to when and what I eat the night before. If I eat around 6.30/7pm the night before then my ‘safe period’ the following morning is usually around 9am-12pm and I can change my bag after my morning shower, without the fear of ending up dirtier than when I got in. If I eat something particularly rich – like curry or a chilli-con-cane – my ‘safe period’ is usually pushed back; so I have to be incredibly organised with my evenings and plans for the following day.
I’m also very conscious of bag leaks. As you can imagine, this is a nightmare! Human waste is notoriously acidic and when this leaks onto the skin, it burns; being incredibly painful, as well as totally inconvenient. Getting a leak at home is annoying but in public, it’s even more irritating. At home I can sort out, change my clothes or even shower without anyone knowing, but in public I have to find an accessible toilet or a bathroom big enough, and will potentially need a change of clothes. This happened to me recently in a lecture. I had to run home; missing my lecture and using the terrible excuse of “I’m not feeling well”. Although, I’m not sure how my lecturer would react to: “I’m sitting in poo and need to go home”. I always have to be prepared for the possible leak and I’m always conscious of it. I keep spare stuff with me at all times *see below* and even though it doesn’t make it any less upsetting, it means I won’t get caught out.
This also comes with the possibility of needing to use a disabled toilet. It may not seem like a big deal, I always get discerning looks walking out of an accessible loo. The way people stare at me in the past actually mean I stop using them (unless I get a leak) out of fear or embarrassment. I know it says more about them than me, but I don’t want to embarrass both parties involved in explaining why I don’t look ‘disabled enough’. This is where awareness for invisible disabilities and illnesses is so important! If the world understood that every disability isn’t visible, it would help me to worry less.
My life has changed for the better; I wouldn’t be here without it. But this is the everyday baggage that comes with pooing into a bag.
A final word of advice: Be nice to everyone, you have no idea who had an argument with a stoma and lost… haha.