1:30am and the Butt Machine is shouting at me. The alarm is intermittent and whilst not terribly loud it’s tone is annoying. I’m still half asleep as the alarm continues to shout but the sound doesn’t register but when it did I feared that there was a leak in the vacuum. Thankfully the charging cable hadn’t been fitted correctly so the battery was running low and there was no leak. But, at the same time I realised that my colostomy bag was full. 

I Feel ‘Disabled’

It was at this moment it hit me, my old butt was tethered to this machine and my new butt had pooped out a bag full in the couple of hours since I went to bed. The first thought that entered my head was that I felt ‘disabled’. Of course, I’m not disabled although right now, with everything that is going on I feel restricted, limited, stuck. 

Bag changed and alarm stopped I headed back to bed only for the Butt Machine to start shouting at me again with a warning of a blockage. This was a new one to me but adjusting the position of the tubes fixed the issue. But, the colostomy bag started filling up again and when that happens I’m usually too nervous to sleep so from 1:30am, I never went back to sleep.

The Canister Full warning is a bit of a red herring and also means that a tight seal is not being maintained. If the leak gets worse and is maintained for 2 minutes the warning turns into Leakage. Not sure why it displays the Canister Full when it’s aware of a leakage.

Dealing With Leaks

Leaks from the VAC indicate a tight seal is not being maintained so air is leaking rather than fluids. The machine appears to continue to work but just not as well as it should. And it shouts at you until fixed. 

Yesterday a district nurse was booked to come and check that everything was ok with the VAC but whilst waiting for the nurse to arrive I sprung a leak. When the nurse arrived she was flummoxed. She had never seen the machine before and didn’t know how to deal with fixing the issue but luckily with my 24 hours experience I was able to guide her in fixing the leak and with a bit of investigation we managed to patch it up.

Time to do some DIY

This morning I sprung another leak and with no district nurse due to visit, it was down to me to patch it up. The leaks usually come out of two places, the top (your butt crack), or the bottom (by your man bits). Yesterday it was the top and today it was the bottom and it wasn’t that difficult in patching it up (it’s not dissimilar to feeling for air in a tyre puncture), although I’m not looking forward to having my man bits waxed tomorrow. Unfortunately due to the location of the wound, I think it’s inevitable that it’s going to keep happening but this means constantly worrying about if you’re going to leak whilst out, and what to do about it if you do leak. 

Living with the VAC

The parastomal hernia and a bit of wind in the bag means it protrudes a bit

If you had to carry around a machine with a tube coming from your bum and brown-coloured fluid moving along the tube, in addition to it sounding like an idling outboard motor, and you’d be forgiven if you wanted to hide it or avoid carrying it in public places. But I don’t want to avoid going out and I don’t particularly care about people seeing it, in fact, I’d be happy to explain what it was if someone was curious. I’d see it as a way of educating people. 

I’m not sure I’d want to take it to a film like A Quiet Place!

I’ve taken it to Starbucks (it shouted continually about blockages), I’ve taken it to the cinema (thankfully it stayed quiet) and I’ve taken it to the pub. If I’ve got to have it with me for 2, 3, 4 or more weeks then the more I go out with it, the quicker I’ll get used it, and learn how to deal with the issues that come with it. 

The First Change

Tomorrow sees my first full change which will involve removing the huge amount of tape (I feel a wax coming on), the tubing and the foam insert. All will then need to be replaced but instead of foam we’re going to give gauze a try. Based on experience with the district nurse, I’ve told them to make sure they send someone who is experienced with VAC dressings. 

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Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life.

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  1. Your experiences aren’t too dissimilar to mine whilst I had it. The main issue was keeping the seal & weeing caused some problems with that so I invested in a shewee, something you don’t have to worry about! My situation was a bit complicated so, luckily or unluckily, I was in hospital for four weeks with it before being discharged so all of the problems were resolved straight away on the ward. Top tip – if you’ve got any stoma rings they come in handy to help with sealing at the top of your butt & also in my case towards the front! They can be cut & moulded go help with sealing. Good luck with your change tomorrow , gauze is definitely the way forward!

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