A man who did not wish to live with a stoma bag was recently granted the right to die. The patient, who was in his thirties, had a long history of serious bowel problems.
Tabloids chose to sensationalise this story and focus on the man’s sex life. His mother described his fear of ‘How can I get a job? How can I get a woman?’ Predictably, this comment dominated the headlines.
The result? More people needing a stoma will have misconceptions built on misinformation from the media.
For anyone new to the term, a stoma is a small opening in the stomach area. A pouch covers this hole, collecting waste throughout the day.
One year on from my surgery, I hope to redress the balance in the media. To anyone facing Crohn’s, ulcerative colitis or bowel cancer, rest assured; life is well worth living with a stoma bag.
Let’s talk about sex
Having a bag will not ruin your sex life.
Prior to my surgery, I read a horrifying account, published in a global magazine, of how a stoma bag sounds like a packet of crisps slapping between two bodies. In print I was informed how, as a man, receiving oral sex is a thing of the past when you have ‘a bag of sh*t’ near your business. Both might be the genuine experiences of one particular patient, but they are by no means the norm.
Publishing the extremes in mass media does not help to inform, normalise, or calm the hundreds of thousands of other people with stoma bags. It fetishises our disability, leering ‘Let’s look at how these freaks do it.’
My life, sex included, has been immeasurably improved since surgery. During an active flare of ulcerative colitis, I would rush to the toilet over 30 times a day. Compared to this, a small (drainable) bag sitting flush on my abdomen is nothing.
I wear a lightweight black waistband to cover and hold the bag in place, (something I definitely haven’t nicknamed my ‘black-belt in…’). To anyone who finds their bag gets in the way at all during life’s more intimate moments, this might be well worth a try.
Body image
You’ll notice I spoke about sex without mentioning how potential partners would judge the appearance of a stoma.
This one is simple. Having a stoma bag is great for immediately wheedling out anyone nasty or shallow. Maybe I’ve been lucky, but I have no experience of this being an issue.
The bigger issue I’ve found is with self-confidence and growing accustomed to a new normal of seeing the bag in the mirror. To those fearing this aspect, consider this: I recognise my former, healthier self a great deal more with the stoma than with the disease.
What about employment?
Illness has significantly disrupted my career. But having a stoma bag is exactly what got me back at a level of fitness to work.
Anyone who has ever had the runs can tell you how drained they feel by the end of the day. To empathise with a Crohn’s or colitis sufferer, imagine having diarrhoea all day, every day, long-term.
My surgeon cut me open and removed my entire large intestine, a major surgery. The post-operative recovery was an enormous challenge, but it was worth it.
Your doctor won’t suggest a stoma unless you are extremely unwell. When dietary and medicinal interventions fail, surgery is the last port of call. But it is a way out. Not the tragic ending tabloid media would have you believe, but a new, brighter beginning.
If a stoma is so great, why did he choose to die?
A good question. Media portrayed this story as a young guy choosing to die as he was very image conscious and couldn’t live with his new look.
People might easily accept this as truth. Facts show otherwise. His survival chances were said to be 60-70% – well below the average for bowel disease procedures. This was a case of extreme illness, and an end to a decade of ‘painful and complex abdominal problems’.
His family supported his decision. What mother would support such a decision if it was solely based on the superficial aspects pinpointed by the papers? Quite clearly, it wasn’t.
Still, he chose to die
Despite all I’ve said, this person opted for death when a permanent stoma could have saved his life. He had previously lived with a stoma in his teenage years.
Judge for the case, Mr Justice Hayden, noted how the patient had ‘utterly loathed life with a stoma’. He said: ‘His confidence and self-esteem has been adversely impacted. His capacity to forge and maintain interpersonal relationships has been significantly eroded.’
Teenage years are challenging enough already. Working as a teacher, I am well aware that kids often have no filter. Remember the awkwardness of your first romantic encounters. Imagine throwing the added anxiety of a stoma into that already toxic mix.
This man needed more than just physical medical care.
Mental health support
Once a patient’s stoma surgery is successful, they are too easily brushed aside. The disease that was killing them is brought under control. Subsequently, there are always more pressing cases demanding attention.
But focusing resources on a mental health aftercare framework for stoma patients could help prevent further untimely deaths.
Much of my psychological support has come from friends, family and chance meetings with people in a similar boat. Many aren’t so fortunate and feel entirely alone. This is where the NHS must be given funding to step in.
Prevention is said to be better than the cure. This recent case is a heartbreaking demonstration that without prevention, sometimes there is no cure.
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