Living with a stoma

Astoma is just where the ileum is brought out through an opening in the right iliac fossa and attached to the skin,¹ right? Wrong. For many patients, a stoma is life changing but for all the wrong reasons.

Medical textbooks tell us that "problems associated with ileostomies include mechanical problems, dehydration, psychosexual problems, infertility in men, and recurrence of Crohn's disease."¹ So do you know what it's like to have a stoma yet? Does this allow us to really be in a position to offer empathy?

In fact, it is difficult to know where to start, so try this. Imagine it is Friday night, you are going out with your friends, and you are deciding what to wear. Now imagine that you are 19 years old and trying to find something sexy that will also cover the bulge produced by the stoma bag that is constantly filing up with gas and faeces. Finally you are pleased with how you look; do not worry about the loud noises your stoma makes, the music in the club should drown that out.

The next challenge is to carry all the equipment you need—including spare bags, swabs, and adhesive remover. So you are having a good night dancing with your mates, but the stoma bag is so full now it feels as though it is going to explode; it has got to be emptied. Simple enough: find a toilet and empty it. In reality we have all seen toilets in nightclubs; not ideal conditions for kneeling on the floor so as to bring the bag close enough to empty without spilling its contents on your clothes. Getting the picture now? Yet this is just one of a number of stories I could tell you, another involves emptying a bag whilst stuck in a four hour traffic jam on a motorway.

So many challenges need to be overcome: the sleepless nights, soreness, controlled diet, social embarrassment, and feelings of isolation, to name but a few. Perhaps one of the most prominent issues is that of altered body image; the grieving process that follows the loss of your former body and trying to regain your sexual libido. Specialist stoma nurses were a blessing during this difficult time and suggested giving the stoma a name so as to reduce feelings of detachment from it but this was too much. Things we take for granted; such as socialising, travelling, our favourite foods, swimming, and buying clothes; become obstacles to be overcome. So spare a thought for those with stomas: the next time you ask, "Does my bum look big in this?" think, "How would my stoma look in this?"

JOHN BAVOSI/SPL

1. Kumar PJ, Clark ML, eds. Clinical medicine. 5th ed. London: Saunders, 2002:305.