I have spoken a lot about how following social media pages of ostomates leading up to my surgery last Summer really helped me feel prepared for life with a stoma bag. For all the negativity that social media use is spoken of, the positives have more than outweighed them for myself. I started my account to share life as a mum with a baby ostomate, then not having a stoma personally. I used the platforms to connect with other parents in the same position, and look for practical advice where life experience from others provided answers that the medical world could not. Life experience is like a precious diamond. A small call for advice on a closed parents group on Facebook saved me many a night where I felt alone. These are particularly helpful when you want to ask something in the safe space, of those that are in a similar situation and not have the world looking in on you. If you type in a topic or condition, you may be lucky and find a few closed groups where a few simple questions can unlock a world of comfort with those that just ‘get it’.
When I had the green light for my own surgery last Summer, I started looking to Instagram for those who were living with a stoma and sharing their own stories. What surprised me the most was the amount of accounts and how open they were! If I was to list all of those that have helped along the way I would be here all day, so below I have shared the accounts that I feel have made a lasting impression on my life as an ostomate. They all have stomas for different reasons and have unique accounts focusing on their lives and medical stories.
This Irish beauty is one of the first people I spoke to through direct message, after she left lovely comments and answers to some of my questions and we started chatting from there. Lisa shares her story of living with crohns disease and more recently arthritis. What drew me to her account was her stoma friendly fashion reels as one of the things I was apprehensive about was how my wardrobe may change following surgery. She is living proof you can still live your life to the full with a stoma, and her affirmations, positive quotes and dance reels can’t help but make me smile!
IBD warrior @ibdwarriorprincess
Amy is a wealth of inspiration and knowledge. Her account is highly educational sharing facts and research about IBD and having a stoma. She works with companies to blog about taboo topics and doesn’t shy away from anything. She shows her raw side as well as her highs and it is easy to see why she has been given so many opportunities to work with companies to blog about her life experiences. Amy also has fabulous taste in fashion and models the most gorgeous dresses to suit all women, whether you have a stoma or not!
Crohns mummy @crohnsfighting
Louise is a freelance blogger who shares her experience of perianal crohns and lives with a permanent stoma. She is a fountain of knowledge and write blogs that cover the subjects not spoken widely of on social media platforms. Fertility, periods and contraception are a different ball game when living with a bowel condition which many women find they aren’t made aware of. Did you know the pill isn’t able to be 100% absorbed following stoma surgery? Well I didn’t and it was thanks to Louise I found out! She is a fantastic advocate for woman living with stomas and having chatted to her outside of posts I have found her to be just as lovely and supportive as she is in her content.
If you want to read what most people are thinking but don’t get to say out loud this is your guy! Ru uses his platform to educate and give his perspective of having a stoma caused from IBD and surviving cancer. It is role models like Ru that will set the tone for my little man when he grows up. Ru uses polls to gather opinions on topics in the community which makes for some very interesting reading. His inbox is always open and I have gained such great advice from him. Having started running following my surgery and Ru being an established runner he is also my go to for running advice.
This lady needs no introduction. When searching for any term relating to stomas she pops up very quickly and it is easy to see why. Billie creates content that is educational, empowering and full of practical advice through photos and reels which are always aesthetically pleasing. Billie has gained a huge following and rightly so, as she not only shows the raw side of having a stoma but also reminds us all bodies are worthy. The impression I get from her content is that she only advertises products that have purpose and added value for us in the community. You will find her inspired blogs and posts across many social media accounts.
Jennie is another person who I found extremely relatable very early in my stoma journey. She uses her account to document her life and raise awareness, and you may have seen her popping up in a few advocate posts too. Having been an ostomate for 3 years she was one of the people I messaged for advice and always replied with such kindness. Her IBD experience has been far from text book experiencing the need for TPN (intravenous nutrition) and hair loss. Despite everything she has been through she uses her account to show how far she has come giving hope and inspiration to others in bucket loads.
The legend that is Keith Thomas. I met Keith a few years ago and he is just as infectious and oozing positivity in real life as you see through his social media accounts. Gaining his stoma bag in 2012 due to ulcerative colitis, Keith can be seen raising awareness and documenting his life as a bus driver in Swansea. He has raised over an amazing £1500 for Wales Air Ambulance Charity and his selfie challenge on social media has attracted some famous faces. Be sure to send Keith your selfies to help him on his way to raising more money. He is such a force of good and kindness I feel very lucky to have met him.
Jessicas stoma journey @jessicasstomajourney
This account is ran by Kim, the beautiful Mum to Jessica aged 6 who has a stoma, the strongest little girl who is such a joy to follow. Living with chronic constipation and diversion colitis, Jessica uses her condition to raise awareness of life with a stoma for a little one. My little boy Jakes sees Jessica and knows he isn’t the only one, we think she is simply amazing. Jessica has raised over a staggering £4000 to help children and parents with bowel problems, supporting Alderhey Children’s Hospital by donating Buttony Bears and medical dolls. Jessica won the Echo Courage Award and as a parent of an ostomate I know how vital these resources are for families and I hope Jessica and Kim know just how special they are.
Natalie Amber @natalie_amber1
The BBC radio presenter and empowerment queen shows us everybody is beautiful. Natalie helps women to find their confidence and ultimately accept themselves for how beautiful they truly are. Natalie was mentioned in a few peoples posts and I was intrigued so clicked on the profile to find a page filled with empowerment, self love and body image positivity. Her images were some of the first I saw on social media showing scars similar to mine having had a reversal as a baby before my second stoma last Summer. Her IBD and stoma reversal doesn’t stop her, yet fuels her to raise awareness and represent brands rocking her scars.
As you can see there quite a few people whom I owe a big thank you for the joy and support their content brings me. Im sure you have a few too. I make sure when I can that I share their profiles and show support as it takes a lot of time and effort to create such quality content and for that I thank you all.
Until next time, Rach x
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