Whatever the circumstances may be for having a stoma, getting your head around your new life can be daunting. For me, establishing a clear routine was the key to this.
Adjusting to life with a stoma
After leaving hospital with my stoma, it was one thing dealing with all the post-op discomfort, but discovering how my stoma worked and what I needed to do to keep it healthy and happy was another. It was quite a learning curve!
I had so many questions going round my head. When do I need to change my bag? How am I going to manage bedtime and potential leaks? How often will I need to empty my bag? How am I going to find products that really help me? Suddenly you find yourself in a whole different world to negotiate, and you have to adjust accordingly.
I should point out that I have an ileostomy, having suffered with Ulcerative Colitis for many years. It was only then that I appreciated that there are different types of ostomy and they behave differently. How you adapt can depend on your lifestyle, your job, and the situation you’re in at home too. Initially things were quite easy; we had two bathrooms at home so I could spend the time in the bathroom that I needed to without pressure.
I also had one of my stoma nurses living a few doors away so knowing help was close by if needed reduced my stress, it helped as well that things were flexible at work as I had an office job where I could use the toilet whenever I needed to. Then, when I changed my job and became a bus driver, the need for a regular routine became hugely important and I became a real creature of habit.
Always carry water
I always carry water with me wherever I go: Not long after I’d started at First Cymru, I collapsed after one of my shifts. I was taken to hospital where I was put on a drip as I was severely dehydrated. I hadn’t really appreciated how an ileostomy is constantly on the go and it’s so easy to forget to hydrate properly to compensate.
Working to a strict rota compromised my access to drinks in general and I was always thinking about when my next toilet stop was coming up, so tried not to drink too much. This had to change – I was lucky to have a supportive management team who facilitated me having rotas and routes that helped me to manage toilet stops and so my water intake could be freer.
Empty your bag as often as you can
I empty my bag whenever I go to the toilet: This habit ties in with the first on my list. I may not always do this when I’m at home as there are toilets to hand, but certainly if I’m at work or out somewhere, I make full use of the toilet facilities to make sure that I’m comfortable and to reduce the chance of a leak. This gives me peace of mind, and it has become second nature now.
Be aware of how full your stoma bag is
I check the fulness of my bag regularly: Over the years I have become familiar with what a full bag feels like, but I like to check by feeling it (discreetly of course) whenever I can. I have learned to manage it by thinking about what I eat and, perhaps more importantly, when I eat.
This impacts particularly if I’m working a late shift- I don’t want to eat anything too heavy, or too much before I start work. I plan what I eat in my breaks so that my intake doesn’t compromise my stoma’s output during my shift. This also applies to if I’m going out to an event or a meeting where I don’t want to have to rush off to the toilet unexpectedly.
Always be prepared
I take spare products and a radar key everywhere: This is so important, I have a few radar keys now so that I can have one on my work lanyard, in the car and a spare one at home. I have an ostomy changing “kit” in my car, my wife’s car, at work (along with a wash bag, a towel and a spare set of clothes in my designated locker), and I have a smaller bag of products which Mrs T carries in her handbag if we’re out at a concert or a show for example.
Actually we’ve been out and about a couple of times and she’s had to buy new handbags to accommodate it as her bag of choice was just too small… Any excuse for a new handbag I say!
Keep up to date on your products
I always order new products in plenty of time: I have all my products stored in a cabinet where I can see at a glance what is there and what is running out. Respond’s delivery service is fantastic and the team are so supportive.
Every month I receive a text message reminding me to submit my next order, and a follow up phone call to check everything is what it should be. There is always the option to adjust the order if necessary and it is brilliant to have that peace of mind and personal service.
Stressing and worrying about having a stoma is understandable but you can do so much to alleviate that stress if you can establish a routine. Alongside the above, I try to take good care of myself and stay fit and healthy both physically and mentally. Walking in our beautiful locality certainly helps, and I try to get out running whenever I can too.
Having that element of self care in my routine certainly helps me to remain positive and a enjoy life I could never have imagined during the years when I was ill. Here’s to many more years of a healthy, happy stoma-life.
