In all the years I’ve had my ostomy, I think this year has been, by far, the easiest.
Why do I say ‘easiest’? What has made me feel this way?
Well, even despite a long recovery from my hernia repair, my stoma behaved really well to surgery, Yes, they made me a new one to repair the hole in my abdominal wall, but this one could have been unpredictable, difficult to cope with but it has been a breeze. With only a small dip in my skin, the area is clean, clear and free from issues. It functions well, even gives me some breathing space when it comes to changes.
Maybe the breezy, easy life of my stoma has been made by me; after all, I have a lot more experience with it now, compared to when I first got one and when I had my proctectomy.
Half of my time has been spent just letting things settle down and taking my time. The rest has been slowly but gradually seeing the continuous freedom it has given me. It is my life-giver, not the life taker, it is portrayed to be.
But in 2021, awareness, respect and understanding of stomas is still lacking.
The motto for the WOD 2021 is:
“Ostomates’ Rights are Human Rights – anytime and anywhere!”
“In these times it is one of our great concerns to put the focus on the Charter of OstomatesEOA Reason for 2021 Motto
Rights: The defined needs and care are not anything at all! They describe necessary needs
of a special group of disabled people. The rights of disabled people are an own right and all
these rights are Human Rights. Disabled people matter, ostomates matter!”
“It is necessary that ostomates receive the information and care which will enable them to live a self-determined and independent life and to participate in all decision making processes”, the Association states. I could not have put it better myself. Knowledge is power. Support in finding that knowledge is key, also. I know I can’t give medical advice or suggest anything to do with anyone else’s health needs regarding their stoma, but what I can do is share my experiences. I can help show the misconceptions of living with a stoma, are just that – misconceptions.
Common Misconceptions – the facts about having a stoma
- Stomas don’t stop you from swimming
- Stomas don’t stop you from having sex
- A stoma should be completely painless
- Modern ostomy bags rarely smell outside of changing
- Stomas are not just for ‘old’ people
- Stomas aren’t noticable
- Stomas don’t have to be permentant, they can be temporary
Estimates suggest 13,500 people undergo stoma surgery in the UK each year, and there are a total of around 160,000 ostomates in the UK. Ostomates come from all sorts of different backgrounds, different medical pathways and they all cope and live with their own stoma differently. There is great variety, and I love that about the ostomy community. Second to the love and support out there, from people who don’t hesitate to give you help when you need it.
I would love for more people, beyond our own community and the loved ones who support ostomates, to become #StomaAware because you are closer to one more often than you think. And there are times when we do require a little more help. Be in with some extra time to access a different type of toilet facility, some flexibly on working hours or just some basic appreciation for the additional daily needs we have, those things do go a long way to making ostomates feel included, welcomed and respected.
Why is sharing important? Why is talking about this helpful?
It begins a conversation.
It starts to fuel a movement toward better rights for those with hidden disabilities.
It can be part of an ostomates road or path of their own personal acceptance.
For me, sharing about my life with a stoma has been about finding a new normal and embracing that. Even the bad bits, it all is part of a larger tapestry that is me. And I do find some of my identity ingrained in my health, with my IBD and my stoma. And I don’t apologise for that, it is what helps me.
Until next time,
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram