Saturday 3rd October 2020 – We celebrated #OstomyAwarenessDay!

Ostomy Awareness Day (also #WorldOstomyDay) is understandably something that means a lot to me & others.

“Why did you celebrate World Ostomy Day?”

It’s simple. I would not be here without my stoma. My stoma saved my life and I am so thankful for the surgeons that gave me Stacey Stoma. There are so many things that I can do because of my stoma.

Life with a stoma isn’t a walk in the park but it’s definitely a walk that I can get on board with now. It has introduced me to so many inspiring, amazing people, some of whom I am now super lucky to call my friends. It has enabled me to learn who I am as a person… I am now able to do things & explore things that make me who I am today. It has also opened so many doors for me& has given me so many opportunities to help others make the most out of life with a stoma.

World Ostomy Day was also a great way to educate people about stomas and encourage more open dialogue, especially across social media, whilst raising vital awareness. I think a lot the time “stigma” actually comes from people not having enough understanding on what having a stoma entails, so it’s super vital to make the most of days such as these to educate & spread awareness so that we can help others understand what a stoma is & the reasons why people may have stoma surgery.

“Are you usually open about your stoma?”

Even though people choose to follow my journey on my Instagram which I created specifically to document my journey and to help others, it’s not something I shout about on my private Instagram, other social media or offline all the time. With my health Instagram being about mind & body care/confidence with a stoma, obviously, most of my posts are focused around this, but people who choose to follow me can clearly see that before they decide to follow. I also like to post about day to day experiences to show people that my stoma rarely limits me to a detrimental extent. Instagram is one place where I put a lot of time, thought & mental energy into helping others and I feel so lucky to be able to do this as it’s something that would have helped me hugely in 2011 when I had my surgery.

I aren’t afraid to talk about my experiences but at the same time, I also know when there is a time and a place to talk about it because as part of human nature, people don’t want to hear about it all the time and people often become desensitised to it if you literally let your stoma define your whole existence & make everything about it. I always say I’m Amy with a stoma because it’s a tiny part of me. There are so many other things which make me the person I am such as singing, going for walks in the countryside and the things I enjoy, the people around me and the life I lead as a bigger picture.

“How did you celebrate World Ostomy Day?”

Offline, it was the simple fact that I could tuck into foods I enjoy thanks to my stoma that enabled me to celebrate World Ostomy Day and just going about my day being able to do even the most simple things I couldn’t do before surgery.

On my Instagram, I joined forces with people in the ostomy community to raise awareness via a few posts including a post with 9 others summarising what our stomas mean to us in 3 words. You can see what people chose to help them describe stoma life in the post but it was great to see “happy” was a word chosen frequently and that stoma surgery has brought so many positives into people’s lives. I also teamed up with Rupert to describe having an ostomy from a male perspective. I think having a male perspective is vital as it tends to be women who are more vocal and open about their stomas online. I have seen more males increasingly come forward to share their stories & support one another which is so heart-warming to see.

I also did an Instagram Reels project in four parts (Part 1, part 2, part 3 & part 4). I wanted to get people in the community together to celebrate how we are all different yet brought together by one thing we all have in common – a stoma. Although we are all at different stages, have things that might work for us and don’t for others and vice versa, we can all use our own experiences to maximise the chances of somebody else finding something that works for them living with a stoma.

There is so much support online in the IBD & Ostomy community which I have benefitted from & I make it my focus to give something back in the form of helping others & raising awareness. If something good comes out of my suffering and means someone else feels more supported in their own suffering and therefore may suffer less, then that makes me so happy.

“What if I find it hard to celebrate my stoma or talk about it?”

Everyone’s journey is different therefore no two people’s feelings will be the same about having stoma surgery, how they recover or how they find stoma life. One person’s feelings may be the opposite of somebody else’s, but it doesn’t mean they aren’t valid.

There are days when I find it hard to celebrate having a stoma despite being positive about it a lot of the time. Being positive doesn’t mean you won’t have bad days and counselling has helped me to realise this. Being positive to me means having the coping mechanisms in place to know how to get through those bad days & keep myself safe. Sometimes those coping mechanisms don’t work as well, or my bad times seem to drag on longer. For example, if I’m having to dilate (widen) my own stoma & I have stoma issues, then understandably I aren’t as happy about having a stoma as I would be otherwise. It’s okay to have those days. There are also days where I feel it has more of a hold over me and more control, but when I strip that back, I know that 9/10 times it’s my stoma that has given me back control of my life overall and allows me to live & thrive.

You also don’t have to talk about it if you don’t feel comfortable and you don’t have to feel guilty if you can’t be positive or celebrate like you might see someone else doing. Stoma surgery is a very personal thing and how we all deal with it differs. It’s not on me or anyone else to tell you how to live your life, with or without a stoma, but I am here to reassure you that you don’t have to do it alone & to try and make the most of the support that is out there.

You own your stoma, it doesn’t own you.