Rosebud

I don’t know how I did it, but I did.

I called it a bag because that’s what it was. Bags hold stuff. According to the modern Oxford dictionary, a bag is described as being a flexible container with an opening at the top. Stomal therapists call it a pouch or an appliance, but to me it was just a bag full of shit.

Below is a photograph of my swollen belly, about a week after the surgery. I look as though I am with child and said child is clawing it’s way out my stomach with a bag to catch it. Kind of like Alien. Within two days of having this photo taken, I was critically ill and in Intensive Care.

But enough of the dramatics. Emptying a bag of your own runny shit into the toilet can go any number of ways. It can be humbling, it can be jubilant and it can be downright harrowing. I remember emptying it myself for the first time. I had been shown by Lizzie, one of the Stomal therapy nurses, how to empty the bag and though we did a couple of practice runs, I was still very afraid to go through the mechanics of the process by myself. I had hoped the nurses would empty the bag and change it for me forever, but I had to learn how to do it independently before I could go home. But first I had to learn how to walk again after spending six days unconscious in ICU. It was the second time I had had to learn how to walk again, and every step is as painful as it is overwhelmingly liberating.

I went to the bathroom sink and filled a jug with warm water to clean the bag of any residual poo. I sat on the toilet as I had been practising and spread my legs as far apart as I could (it’s a good thing I can spread ’em for jesus). I lifted my shirt, looked down at the bag which felt warm to touch, and said out loud, ‘I can do this’. I unfolded then opened the bottom of the bag where the contents poured into the toilet. I had done it. I had emptied a bag full of my own faecal matter into the toilet. An all-encompassing sense of relief and achievement swept through me and again, I spoke out loud, this time saying, ‘I did it.’ I tend to talk a lot to myself out loud.

Now all I had to do was pour some of the warm water into the bag to clean it out properly. Apart  from some minor splash back, I had done what I had been taught to do. I had done what I had to do. That done, my attention soon turned to when I would have to change the bag and apparently, this essentially came down to personal choice. Some people with colostomies and ileostomies prefer to change their bag once a day, while others would leave the same bag on for up to five days. My plan was to change it every two days to reduce the risk of my skin breaking down due to its violent aversion of adhesives, but this was not to be.

When Lizzie and Val came around that afternoon, I told them I had emptied my bag on my own. I received a small round of applause. Lizzie was in her early-twenties and Val was a seasoned Stomal Therapy nurse with a funky silver crop and skin so olive her teeth glowed. Shit didn’t bother them – literally. In fact, they loved shit and they thought my osmotic was beautiful. Their passion was helping people with their shit, so while I was repulsed with how my body was eliminating waste, Lizzie and Val celebrated it, placating me with the hard sell and testimonials of other poo bag wearers. From these women, I came to realise that as odd as it was, and as revolting as it was, shit happens. Or at least, it spurts out of a hole in the middle of your exposed bowel and drops into a ‘pouch’.

From what I had been told, people lead full lives with a poo bag – how darling! They eat normally, go out with their friends, swim, play tennis and other physical pursuits; they date and even have sex – good sex! – and they go to uni and work. Well, not this little blonde duck.

The problems were there from the beginning, but amplified somewhat when I returned home. The bag would leak; often in several places and shit would run down my belly and into my groin to rest until it gravity befriended it, whereupon it would drip down my leg and seep through my clothes. Every time this happened,  I would quietly say to myself ‘SHIT’, trying to keep my poker face in tact.

There would be explosions of shit when I was supine, and at night I often woke up to a foul stench and a wetness from where the bag had exploded clean off my body. There were times where the shit was just short of hitting the fan. White sheets were off limits, and so I had to have yellow sheets and brown towels on my bed because I had not long bought new bed linen. White, of course.

I would wake up with chunks of shit on my face and in my hair.

In the beginning, it was a shock. I would lay in the darkness for a few minutes to gather my thoughts. Reaching for my bedside lamp, the shit would roll off my body like water off a duck’s back and therefore spreading the mess. I got used to it – so much so that whenever it happened, which was at least once a day, I would respond robotically and would say out loud, ‘SHIT.’ Then the clean up would begin.

Sometimes I cried. Other times I got angry. Indifference was never far away. I simply could not understand what had happened to my body and to my life. I was about to turn thirty-one and had vulval cancer. In a seven hour surgery, surgeons peeled my vagina from clit to crack like a grape, which meant I had to undergo extensive skin grafting (the donor skin was taken from my left thigh). Due to infection risks, I had to have my bowel re-directed. If I hadn’t had my bowel re-directed, I would have died. So again – what had happened to my life? Thirty-one year olds don’t have poo bags – eighty-one year olds have poo bags.

And so I soon had a routine whenever there was an explosion:

Say ‘SHIT’.Gather thoughts and turn on lamp.

Assess the mess and the expected size of the clean up – was there shit on my doona or is it in situ on my body?

Slowly get out of bed, ensuring that no shit splatters on the floor.

Walk cautiously to toilet or shower, depending on how big the explosion is.

Sit on toilet and peel off any remaining parts of the bag that are still attached to my skin.

Dump bag of shit into a nappy sack.

Hold a wad of toilet paper over rosebud (the stoma/exposed bowel) in case of violent sprays of shit that will decorate the floor and surrounding walls of the toilet (or if there was enough momentum, my chin).

Clean skin around rosebud with baby wipes, disposing of them in the same nappy sack.

Mould wafer* to size with fingers.

Cut a circle in the centre of the bag where it will stick to the wafer and fit over rosebud, so it can collect waste (don’t cut the hole too small or too big).

Wipe the area with a skin prep swab to prevent skin from bleeding and peeling off.

Allow skin to dry.

Attach wafer.

Peel paper off fresh bag to expose adhesive.

Attach bag to wafer and press down using the natural heat of my palms to get a good seal.

Hope to fuck that this is going to be the only explosion tonight/this morning/this hour.

Dispose of all other rubbish into nappy sack.

Knot and dispose of nappy sack into the nearest bin.

I would publically like to thank my mother for hosing down and washing my doona countless times over that three month period of shit.

When I had a shower, the routine was much the same. I would prepare my supplies and upon removing the bag, I’d take big John Cleese steps to get into the shower as fast as I could, so if rosebud was going to projectile, it would end up on the shower floor as opposed to the bathroom mat. I became one with rosebud, but struggled to contain my discontent as it erupted much like an active volcano does. And so ‘Operation Shower Poo: Mark II’ was born.

This involved showering first, then removing and changing the bag. Corn and other hard to digest foods would swim in the shower recess and I found that it was far easier to shower before changing the bag, which irritated my skin with the application and peeling off of adhesive.

Afterwards, I’d hose any poo on the shower floor down the drain; dry myself while holding a wad of toilet paper under and across rosebud to catch any surprises, get out of the shower and execute the above routine. I was also mindful that any exertion, particularly a cough or a sneeze, would push out further egesta – that was just more shit I had to clean up.

And so, here are three facts about my Ileostomy experience –
1. I didn’t fart for three months. After the reversal surgery, it was like welcoming back a long, lost friend.
2. I have never used so many baby wipes.
3. Touching your bowel is much like touching a wet, smooth knob of butter.

I never liked butter anyway.

13 thoughts on “Rosebud

  1. Thanks again for telling it like it is Carly! In the “Reality” shows I have seen, I have observed very little realism. Unless, that is, one is shooting in a detox center… It is about dumbing down the population and keeping their minds on what is really going on.

    xoxo 🙂

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  2. If only everyone could see the shit on the doona and in my hair – it’s SO glamorous! I hate ‘reality’ tv for so many reasons. The fact that it’s called ‘reality’ tv is a joke, as it’s edited and manipulated to show us what we apparently ‘want’ to see. Such a wank xoxo

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  3. Awesome post Carly. So brutally honest which paints such a vivid picture of what it was really like for you. I can’t imagine what an ordeal it would be to have to move through every day like that, constantly on edge in case there was an eruption… definitely not something that anyone would wish for. Mwah xx

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  4. I’ve read this twice now. It’s so vivid and honest and real. I too hate reality TV because in ‘reality’ you simply cannot edit the parts you wish people hadn’t seen … It feels weird to say I love reading about the things you have gone through, but it does make me feel more educated and humbled for the experiences of my own life. I also love your strength and willingness to share. Well, let’s just admit it … I love you xoxo 😉

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