Oh, how things change!

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“Since living with a stoma became the norm, I realised I was worrying about nothing as very little in my life changed”

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When I became an ostomate, I expected things to change. I anticipated trips to the toilet would become a long-drawn-out affair and getting ready for work would take hours, my whole concept of time changed. However, since living with a stoma became the norm, I realised I was worrying about nothing as very little in my life changed.

Nearly 10 years down the line, I thought to myself “what has changed now to how I saw things before?”. Some of these thoughts could almost be a blog in themselves, others are nothing more than a passing thought. Either way you may draw a comparison to your own expectations.

Public Engagements

Before my stoma I was quite nervous about these anyway. Public speaking wasn’t and still isn’t really my thing. The thought of doing anything like this sets my stomach into back flips.

Bag Bulge

It may not be visible, but to me I imagine I’m standing there trying to hide a beachball under my shirt. You can at times feel it slowly inflating, wondering what point it could pop, however to the people around you they see nothing.

Flatulence

Just to add to the stress of public speaking and dealing with the bag bulge worry, in comes uncontrollable flatulence. I don’t know why, but sometimes my bag will not make a peep and lull me into a false sense of security, then out of nowhere it has a full 10 second outburst to make its presence know, usually at the quietest of points.

In this situation, if one sneaks out unexpectedly, I try to cover it up by sort of leaning to one side with my elbow pressed into it. I imagine I look normal, but in reality, I must look rather odd. I then do everything in my power to draw attention away from me... for example, “oh look! Is that H from Steps?!”

Sometimes I try to get a good seal to prevent further noise, but I know the moment I move that elbow I will be emitting a sound not too dissimilar to a high-pitched bagpipe. Usually this then results in that moment where people are all looking at each other thinking “did you hear something?” while I’m talking about H saying “yeah, he used to be popular in the nineties” like nothing happened.

Most people tend not to say anything, while others mistake the noise for a grumbly stomach and ask if I’m hungry, to which I reply, “I’m starving!” in order to try to avoid any more questions about what the noise might be.

Ironically, in some of my most stressful situations it’s been fine, but the moment I think “I hope it stays silent” my stoma quickly says, “hold my beer…”.

Public toilets

Back when I had the ability to hold things in, public toilets were never given a second thought. Now they’re very much in the thought process of many trips. These can vary from the damp wet park toilets, that make you wonder when anyone last used them, to the ones that are a bit more modern, yet still suffer with the same quirks.

Wet Seats

Be it a splash, dribble or tsunami, none of these are great situations. If you’re not a sitter, then you can move the offensive seat and you’re away!

You could wipe the seat with toilet paper, but we all know, especially in the current climate, that it really isn’t sufficient when fighting bacteria. So, the last option is to sort of hover... which takes a certain about of muscle control and strength.

Wet floors

If you’re a person who sits to empty, then wet floors are an inconvenience, but hopefully manageable for you. However, if you’re like me and you’re a kneeler, then it’s horrible situation to be in. In this situation a degree of balance and good quad strength is required to sort of squat and then empty. The danger here is that you can add some additional height to the drop zone and in doing so, run the risk of getting something “returned to sender”.

The combination of a wet floor and wet seat is a code red situation!

Doors

This one really gets on my nerves. Health condition or not, when someone wants to use the toilet, I’m sure they’d like to do it without an audience.

If the door doesn’t lock, then immediately a complicated situation has been made harder for ostomates. Sitters have to sort of sit with one leg extended to hold the door shut, or if you’ve got a long reach, you could try to hold it shut with your hand and do your business one handed, however its quite a challenge if Velcro is involved.

The kneelers among us will try to extend a leg back and hold the door shut with our heel. If the gap below the door is quite high, you might end up using the back of your ankle and then you run the risk of tripping up an unsuspecting by-passer.

Activities

Swimming, Surfing and Kickboxing

Anything I now do in the water, I either do in a wetsuit or a lycra swim vest. It’s not just to keep me covered, but also helps hold the bag to my body. I’ve had bags nearly come off while diving, so it’s important the bag sits flat and streamlined to my body.

For kickboxing I tend to wear a support belt. Again, this helps keep the bag secure to me. Without it, I couldn’t bear the thought of running, having the weight of half full bag pulling on me with each stride. The belt helps remove that uncomfortable feeling and help me enjoy the activity.

Public Changing Rooms

Thankfully, this has not been that common an occurrence and I can only think of two occasions where I freely exposed my bag in the changing rooms.

Like many people, I had my reservations about showing my stoma in public, but to my surprise, nobody really bothered looking or staring. Part of me felt maybe people are more aware of stomas than we give credit, although I won’t be making it a regular habit.

Of course, there are a million things that we have to think about as ostomates, but hopefully this blog has given you a little more information about what it’s like to be an ostomate and just some of the things we need to think about since our surgery.

Until next time!

Nick 😊

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by Nick Axtell

Nick Axtell

About the author

Hi I'm Nick. Diagnosed with Crohn's in 2006, gained a Stoma in 2010 and Completion Proctectomy November 2015. I have a family with 2 girls and a somewhat unusual sense of humour, which I hope will come across in my blogs. I am trying to live my life to the fullest and not let my stoma get in the way.