My name is Sarah Wood, I was diagnosed with Crohn’s in 1983, when I was 17. Although this was a difficult time, my support team got things under control for a while. Unfortunately, in my early twenties life became unbearably difficult. I decided I needed to find a specialist with a depth of understanding of Crohn’s and its challenges. It took a visit to my local MP but I eventually got an appointment at a specialist London hospital. It was a truly life changing experience, I developed complete trust in the medical team so quickly. I knew I would get better. The outcome of the advice meant that I had a permanent ileostomy formed when I was 26.
As a long term worker with families/young people with disabilities of any form it is difficult not to be ignorant in some way – we don’t know what we don’t know. In my work I have found that what can help is sensitive questions and empathy and the will to increase personal understanding without assuming you can decide what is better for someone else. For me personally I would much rather someone ask a direct question and not assume. In all honesty and very worryingly my experiences of ignorance have been mainly within health teams and other professionals linked to my own work. I have said to my own consultants that there should be some serious thoughts on wider education. I do appreciate this probably isn’t the priority. Some examples are – a radiologist asking me if I was sure I’d had 3 children? Evidently he thought if you had a stoma and your bum removed this wasn’t an option. He just kept saying ‘are you sure?’. It became a bit of a joke with the nurse supporting me, she looked embarrassed. A dermatologist told me to help my skin around the stoma heal - I'd need to take the stoma off for a day and let the cream work. She had no concept that this was not practical – she just kept saying – ‘Do you mean you have to wear ‘that’ all the time?’. These are not the only examples but I thought they are a good snapshot. All you can do is explain in the most helpful way. It is much worse when you are feeling unwell and not listened to – you are vulnerable and I tend to become very emotional. I think education is key to this and talking to people with a stoma. People whose stoma is for different reasons and people of different ages. It's so important to understand a person’s lived experience. To build confidence and trust for the stoma community to be able to share in a safe space. To then develop helpful and informative communications.
A common misconception is that stomas are for old people, but another is how complicated things can be and the impact on a person’s day to day life. It's like any medical condition it will be personal to the individual and managing a stoma will be different for each person. It is always difficult to be told by someone else without a stoma - how you feel and what you are experiencing. What you can and can’t do or eat. The general way people will shy away from open conversations about stoma/bag life yet profess to be open and inclusive.
Social media can absolutely play a huge part in raising awareness of stoma life and Instagram platforms like @positivelystella, @withmesophie, @cyclingwithcrohn’s, to name a couple, do a great job of raising awareness. However, it may not reach the population who need to learn more. Personally, it has really helped me connect with my own community. The broader groups like IA and bladder and bowel/coloplast are also really helpful for communication.
The mainstream media have an opportunity to get things more front and centre which I hope might raise awareness for the better and at a more gritty level. It would also be extremely good if mainstream stores sold stoma friendly undies and hernia support – this is so costly from specialist providers. It would also support bringing stoma life into mainstream eg if the undies were available in M&S and anyone shopping could see them. Some of the support garments already for sale are suitable but its about using models in the campaigns to highlight this. I think this applies to all inclusivity campaigns.
Advice to my younger self would be to love myself more and not overthink. To reach out for help and be comfortable. For new ostomates they need to have an opportunity to find their own way. To connect with others if they feel this will be helpful. But to take their time finding their own way. The medical teams are excellent but everyone is an individual and will find a way that’s right for them. Try and embrace the change.