Life with a bag of wee or poo hanging from your body by a tube held in place with a sticky plaster is a nightmare scenario whichever way you look at it. And look at it I did for 18 months while also juggling a full-time job that included air travel and carrying on as best I could with a colostomy at the age of 35.
A colostomy bag at any age or stage of your life is unpleasant. In hospital, colostomies are common place – kind and skilled nurses are on hand to help where needed. But when you’re out and about, it’s a different matter altogether. There are practical issues to consider such as what outfits you can wear and how long you can go – in meetings, social gatherings, on aircraft – before having to empty the bag. Not to mention the ever-present worry and anxiety associated with the risk – however small it may be in reality – of a whiff, leak or full-blown calamity with the bag.
I can quite understand people who reel in their social life, avoid certain situations, refuse to travel and retreat. For those, like me, whose colostomy is reversed it’s a waiting game. But for others who will wear a colostomy bag for the rest of their life, the adjustments and acceptance are permanent.
My own story involved massive bowel surgery at the age of 34. Years of pain, cancer scares and misdiagnoses eventually ended when a rare rectal tissue malformation was discovered in 1997. While relieved this wasn’t cancerous it required gruelling and invasive surgery. Bowel Cancer Awareness Month is a salutary reminder of how I suffered for so long before my diagnosis, surgery and recovery. But also how lucky I am that my condition was treatable and my colostomy reversible. I am very aware that many others are not so fortunate.
Going to the toilet is a habit taken for granted until you have a problem. Bowel disease is a very personal topic and not many people want to ‘go there’. I know from experience that poo is taboo. Problems with your rectum are really hard to discuss. I get that. But we throw the baby out with the bathwater here – we don’t talk about the symptoms or disease and, therefore, we don’t talk about the treatment or interventions that people face. And that’s where it’s hard. Sitting in board room meetings where a little whiff of gas unavoidably is released filled me with shame. Fiddling with stoma, getting poo under my manicured nails and the occasional accident were deeply upsetting. If I had been able to speak more openly about my condition, my embarrassment – and that of others caught up in any ‘moments’ with me – would have been reduced.
What brought me down each and every day was the mess and unavoidable confrontation of my toilet issues. I could smell bad smells all the time – although I’m sure much of this was imaginary as I knew the colostomy bag was secure and sealed. To me, cleanliness and hygiene are core to being a woman and I found the situation very distressing and became almost obsessive worrying about smells.
I couldn’t use latex gloves to change my colostomy bag - it had to be bare hands as it is a fiddly job. Inevitably, I got poo on them. I felt I could never be clean.
My Aroma Care Solutions range has a number of products I wish I’d had when I wore my colostomy bag. The Hand & Nail Barrier Cream would have stopped me getting poo on my hands and under my nails, the Nose Guard would have helped mask the smell when emptying the bag and the Bio Enzyme cleaner would have cleared up any spills brilliantly.
Products of course are just a small part of life with bowel disease. Much more important is a broader understanding of bowel disease, how surgery can affect people and how tricky it can be practically and socially to wear a colostomy bag. We need to break the ‘poo taboo’ and speak more openly so that people who are affected can receive the support and understanding they truly need.