Last October I became a bag lady when an emergency life-saving operation left me with a colostomy. My Winnie-the-Pooh arrived as an unwelcome surprise. Like most people, I had absolutely no idea of what a stoma was or how to live with it. It was a very steep learning curve, with patient, tender assistance and instruction from the hospital nurses and specialised stoma nurses, who gently followed me up with phone calls and personal visits after my discharge from hospital.
Some people prefer to remain ignorant of nasty things that may never happen, but I am curious. I need to know as much as possible about what is going on, however unpleasant. I have a burning desire to know, although right in the beginning I wasn’t absorbing very much information. However, after the initial shock and mental numbness, I found that the people on the other end of the phone when I rang to order my supplies from Charter Healthcare were also very knowledgeable and able to make useful suggestions. And, in small, digestible doses, I discovered many helpful websites and YouTube videos.
Six months after my surgery I joined the Colostomy Association, who sent me leaflets and brochures on specific topics such as reversal, parastomal hernias, irrigation etc. And I learnt a lot of new terms and concepts.
The Colostomy Association (CA) publishes an extremely useful quarterly magazine called Tidings, crammed with advice, information and encouraging articles. An estimated 120,000 people in the UK have an ostomy – a colostomy, ileostomy or urostomy, depending on whether it’s an outlet to the colon, ileum or bladder – and unless the person tells you, you probably don’t know who has one. It’s a condition that a lot of people find distasteful or even disgusting to contemplate, and certainly don’t want to discuss. Consequently, ostomates can feel very isolated. In a sense, it might be better if, like mediaeval lepers, we had a bell to ring with the cry of “Unclean! Unclean!” At least then we could identify one another.
Thankfully, CA also has a facebook page with a closed group, which offers a welcome opportunity to discuss all kinds of issues related to the condition. The most striking feature of this page is the tremendous empathy and compassion of the contributors, and their magnificent sense of humour in the most trying of circumstances. Courage and bravery in desperate straits may be found anywhere in the world, but that famous gallows humour and banter with a wry deprecating grin in the face of the grim reaper is so typically British. Reading this page, you simply can’t feel sorry for yourself for very long, whether your ostomy is, like mine, the result of diverticular disease or something more onerous to live with like Crohn’s disease, ulcerative colitis, bowel cancer or worse. It has made me appreciate just how fortunate I am to be able to eat and drink more or less anything I like, and to be pain-free, leading a relatively normal life.
Some of the group know one another personally from regional or national meets, others have just bonded through sharing on the website. Some of them have had their colostomy reversed, so no longer wear a bag – these are nicknamed Dysons (after the bagless vacuum cleaner), but they remain in regular touch offering support to others contemplating reversal, and reporting on their own progress.
There is nothing more encouraging, when you are on a difficult journey, than to be accompanied by those making the same journey or who have already made it and know how it feels to walk in your moccasins. You can complain, moan, let off steam, discuss the most intimate matters, ask for advice and opinions, compare medical care and experiences with various appliances and accessories, and chuckle over funny things that happen only to ostomates. CA’s facebook page is, for many, a lifeline.
It is tempting to identify yourself by the aspect of your life that currently looms largest: in my case, over the past decade I’ve fought against prioritising those tags that – though true – imply inadequacy, inferiority or failure: I am a divorcee, pensioner, foreigner and great-grandmother as well as being overweight and visually impaired. Now I have another aspect with negative connotations that is threatening to dominate my self-awareness and distort my body-image. I am stuck with my colostomy for at least another eight months, and then perhaps I might undergo major surgery again for a reversal. We’ll see about that: sufficient unto the day is the evil thereof … and the good.
What it brings home to me, as I list these unattractive attributes, is that there is also an upside. Divorced? That means I’m free to do more or less as I like when I like. A pensioner? That’s maturity, and I’m no longer a slave to deadlines or dependant on my clients’ whims. A foreigner? That’s a great excuse for eccentricity: I just say, “I’m English!” A great-grandmother? I have a family and all the joy that brings, without the responsibilities of a parent. Overweight? Plenty of people appreciate a hug from a plump woman! Visually impaired? I don’t see the imperfections and so everyone is beautiful. An ostomate? I have a greater appreciation of what it means to be alive: a bag is better than a box! From every single defining aspect listed above, I have gained and been enriched by insights and perceptions that have, I hope, made me a more sympathetic and empathetic person than I was.
As I see others making this journey, I can sing out. I can sing loud and clear: I have travelled that path. I have also worn those moccasins.
And this line of lingerie and swimwear is an incentive to lose some of those excess kilos!
PS Interestingly, and significantly, the WordPress spellchecker has queried every single term related to stoma in this post. Just shows what a taboo subject this is 😀