I am new to life with a stoma, and there has been a lot to learn. Getting a train, commuting to work, going for a walk, or booking a holiday are all things that I took for granted previously. Now, they aren’t so straightforward. I have to build my ileostomy needs into my routines, and it hasn’t been easy to adapt my habits.
For a year before my surgery, I was so unwell that I was virtually housebound. Now, I feel liberated to no longer be tied to the bathroom. Three weeks after my operation, I travelled to London to see a show. Venturing out so soon was like ripping a plaster off quickly. Rather than allow myself to wait, and the anticipation to build, I got the experience over with. I am glad that I braved the trip, although in retrospect I’m not glad that I drank so much wine!
I bought the tickets for Bowie’s musical Lazarus before I had ever heard the term ‘sub-total colectomy’. I didn’t want to miss out because of my stoma. At that stage, I was still constantly checking my pouch, so sitting through a two-hour show in a busy theatre was a test of my nerve and my bag fitting skills. The show was brilliant. I cried all the way through it, partly because the show was amazing, and partly because I was doing something that had previously been unthinkable. With the support of my sister, I was able to feel normal. It was an incredibly restorative experience.
When I first thought of travel with a stoma, long haul flights and exotic holidays came to mind, but for me, that trip to London was as significant as any overseas trip. It showed me that I can be ‘normal’. After being housebound by my condition, just stepping outside the door felt like a journey, so that visit to London was a huge milestone.
Since my surgery, I have been getting out and about locally, and occasionally venturing further afield to build my confidence. I have started cycling and walking, driven 200 miles to visit my parents, been on an overnight business trip and had a weekend at the coast. Before I had my stoma, these things were almost impossible. Last December, I went for a walk and after about a mile, I realised that I hadn’t panicked about how far I might be from the nearest bathroom. That was a happy moment! Bowel disease ruled my life for 16 years and I was afraid to stray too far from the bathroom. Now, it feels amazing to be able to go outside freely.
I haven’t booked a holiday abroad since my operation, but I do have plans emerging for later in the year. The thought of being overseas and taking a flight with a stoma does make me apprehensive, but I remind myself of something my dad always says. ‘A problem managed is no longer a problem.’ I try not to see things as barriers, but as challenges to navigate my way through. I have to be resourceful and find ways to manage tricky situations. I am determined to keep learning about how to cope with a stoma. I am finding a new ‘normal’ that my ileostomy fits into, and who knows, next time I find myself writing, I might be on a sunny beach!