I thought it would be interesting to document and share what my daily routine looks like living with an ostomy – in terms of emptying, eating and drinking – and how I structure this around my typical (working) day.
Below is a timeline breakdown of my typical day, with this pattern now very much ingrained and second nature to me.
I’m a big advocate of wearing a waistband as part of everyday clothing if you have an ostomy and so below I’ve provided a comprehensive summary of the different ones available for you to try out.
I realise some people don’t like wearing a waistband – as they perhaps don’t like the feel of them on the skin – but the pros far outweigh the cons for me and you soon get use to the feel of wearing a waistband, most of which are very comfortable, lightweight and breathable.
I think there are the two bags on the market that are arguably the most popular with young people at the moment with an ostomy, I would say – the Coloplast Sensura Mio and the Salts Confidence BE. Don’t get me wrong, there are other bags out there by other manufacturers that you may well prefer, but for the purpose of this comparison I will analyse the pros and cons of the Salts and the Coloplast bags, and give my verdict on what I think is best….
I’ve decided to write a blog about this as during a recent radio interview I was asked why all of a sudden I have decided to publicly raise awareness about IBD and ostomy life, after keeping it to myself for eight years.
In response to the radio presenter I gave a pretty bland answer along the lines of how I now want to ‘share my experience and help others facing similar challenges’. Although this statement is true, there is more to it than that which I would like to use this blog to explain.
One thing I learnt whilst I battled to save my jpouch for two years was how much the colorectal medical profession still has to discover about jpouch complications.
The problem with my jpouch was quite rare, it wasn’t something common such as pouchitis or a stricture for instance, but rather what I can only describe as constipation like symptoms that prevented me from fully emptying my jpouch. (Cool bowel issues to deal with, hey).
I recently got chatting to a ‘stoma veteran’ who was telling me what life was like with an ostomy when he had the surgery in the 1970s. Compared to back then it’s fair to say things have improved leaps and bounds!
It sounded pretty basic and made me grateful that things have massively moved on in terms of appliance quality, technology and post-operative support.
A good analogy for living with a jpouch is that it might be a bit like walking a tightrope.
By this I mean that when you eventually master a jpouch you might feel invincible and able to do a somersault and still land back on the rope. However, if your jpouch starts to act up and show signs of slacking then you quickly lose your balance and sure footedness.
I have ostomy surgery ‘coming soon’ due to jpouch failure and so I’d like to share with you how a dodgy jpouch can make life tricky. As my misbehaving jpouch, despite my best efforts, has been a literal pain in the arse for the past two years.
For those that read my first article, I have nothing against a jpouch – far from it – as I know first-hand that when they function correctly you can live life to the max, especially with a positive mindset.
But I have to confess that having struggled for a good amount of time with a poor functioning jpouch, I would much rather have an ostomy again.
Having experienced life with both a jpouch and an ostomy, nearly eight years later I have realised that depending on what either of them throw at you along the way, it is fine to reverse your opinion about which you think is best.
Of course, some people never hit a bump in the road and are able to go through the rest of their life in a linear direction perfectly content with their jpouch or ostomy, without having to consider more surgery. But what about those of us who are having to contemplate the prospect of more surgery?