Jennifer Bird uses her personal experience to highlight the importance of after care and psychological dimensions of illnesses such as rectal cancer
Often health professionals ask me, “How are you feeling today?” But I hesitate over how to reply. My usual response is “I am OK”, even when I am not.
In 2011, I was diagnosed with rectal cancer. The necessary surgery did not go well, resulting in a Hartmann’s procedure that left me with a permanent stoma and little or no chance of reversal due to radiation damage. I am 60 years old and, as a result of my illness, now have a body mass index of 14, which means I am very underweight. I have become a stranger to myself. My body is not the one I used to own.
Recently, I found myself in the position of being a patient again, having just had surgery for a parastomal hernia. Grateful as I am that the cancer has been eradicated, many complications remain, mainly centred on the fact that I had a colostomy.
After my surgery, problems related to living with a stoma gradually unfolded. It has taken me four years to acknowledge my struggle, as seeking support becomes harder over time. Living with this illness has been a lonely experience. How do I tell anyone about my feelings of loss of femininity and sexuality? I am married and have a very supportive husband, yet this remains a private issue and one that is embarrassing to share. The ageing process heightens these difficulties further and you can lose sight of what you were once capable of doing.
The psychological dimension of illness and aftercare is often overlooked: for example, when do we take time to discuss delicate issues, such as sexual intimacy post life-changing surgery and treatment? I qualified as a registered nurse in 1985 but am no longer practising. In my nurse training, we were taught about communication skills and the importance of supporting our patients with empathy. However, this is not always implemented in clinical practice, which often targets the practicalities of care.
I am not suggesting this is an issue solely to be handled by nursing staff but merely that nurses might be the first point of contact. So, instead of asking, “How are you feeling today?”, ask me, “How do you feel about your colostomy?” It may provoke a more incisive reply and create a space for meaningful discussion.
Effective communication relies on two or more people being willing to talk openly. After surgery, I did not feel able to talk to anyone in a clinical setting about my body and loss of femininity. I wish I had. No one asked me if I felt happy or sad about my situation. It still remains a problem and a daily challenge.
Seeking help is not the most comfortable thing to do as it implies I am not coping, and it can be difficult to find the right support. It is important to remember that issues like an altered body image and its consequences rarely disappear. Discussing bowel movement and personal intimacy remains a taboo and most people would prefer to remain silent.
I hope this article will bring an awareness of the importance of talking and listening to people who have had a colostomy about the effect it has on every aspect of their life.
Jennifer Bird is a retired nurse
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