 |
| (C) Microsoft stock photos. |
One of the pressures of Covid was that I went through all my
treatment – radiotherapy, chemotherapy and surgery (a seven day stay in
hospital) on my own. My wife could not attend my appointments, as I had with
most of hers. Thanks to the amazing support of my wife, and the fantastic team
at Ipswich hospital, I managed to stay quite positive through most of it. But
after surgery (an ultra-low anterior resection), I had a new hole in my belly -
a loop ileostomy (a kind of stoma). A routine, natural bodily process became something
totally different overnight.
“It is now estimated that one in 335 people in the UK are currently living with a stoma. Individuals of all ages can have a stoma. Stoma surgery is undertaken to treat a range of illnesses including cancer, diverticulitis and Crohn’s disease or following a trauma to the abdomen.” – Colostomy UK
 |
| (C) Bullens.com |
There are many reasons why you might have a stoma - mine was
cancer. Some people can have them reversed after a while. For the first year I had really hoped I could, because the thought of 'being normal' again was something I clung to. But mine is not reversable without considerable risk. Understandably, the impact of
this major physical change is not just on the body, it’s on the mind too.
For some people, the impact of having a stoma that you
literally wake up with one day (after surgery) can have a negative effect on
their mental health. In the online groups I belong to where we discuss all
things stoma, we have a joint dark humour, but also the humility to share the
challenges – from the practical to the emotional.
For example, feeling totally unlovable because you have a
bag. Embarrassed to do things like go swimming or visit the beach, because you are so self-conscious.
And some people react against their
situation in a way that severely affects those they live with – such as not
taking the care and hygiene needed when changing – almost deliberately driving
away loved ones. And not untypically come issues like depression, anxiety and
even PTSD. A stoma also changes how you process food, so you may have to change
your diet too, which can be even more challenging if you have disordered eating.
Human physical resilience is extraordinary – ostomates (our
collective noun) learn to adapt and manage and get on with life with a bag. But
some people with a stoma worry about perception, myself included: what do my partner/my
family think of me now? what will I say at work? what do I think of myself because I have a stoma? Although
I have adapted to bag-life and my partner is amazing, for many it is a challenge.
These are some quotes from our support groups:
“How can I be intimate with someone with a stoma? I’m
worried it will put them off.”
“Struggling with being confronted at disabled toilets -
no you don’t look disabled use the ladies!!”
“I’m worried about leaking on holiday.”
“…I told her about
my stoma. That was that.”
“I look in the mirror and hate what I see”.
I have three simple bits of advice:
- You are not alone! There are thousands of us with stomas – find a safe online or local community to join.
- Find the charity that supports the reason for your stoma (eg Bowel Cancer UK, Chron’s & Colitis UK etc) or reach out to Colostomy UK. If your mental health is being severely affected, reach out to a mental health charity like Mental Health UK, Rethink Mental Illness or Mind. These charities understand your challenges and can help you.
- Believe in yourself. Remember that your bag does not define who you are. You are still the person you have always been.
I also have a silly rhyme I use – “I’ve a hole in my belly where my gut pokes through, so I don’t use my bottom when I need to poo”. Humour is my way of coping.
Useful resources:
- My experience of PTSD after surgery | Your stories | Mind
- Life with a stoma: 'It's not a bag for life, it's a bag for living' - BBC News
- Ipswich Cancer Wellbeing and Information Centre
Related blog posts...
No comments:
Post a Comment