There’s a good chance that if you have a stoma, you don’t know anyone else with one. I was lucky in the sense that my Grandad also has a stoma so people in my family had an understanding already. However, even knowing one or two people can still make you feel isolated, especially if there’s a big age gap. If you don’t know anyone, it can feel quite overwhelming.
The internet is a wonderful place. It connects people all over the world and means that you can talk to people who have the same condition as you. You can feel part of a community and less isolated. There are so many support groups and websites which can help you get a better understanding of your illness. Places where there are tips on how to deal in certain situations or just a place where you can vent about your bag and people just get it.
One place where I found a lot of support is in Facebook groups. To find them, just search in Facebook ostomy support and a lot come up. I’m always apprehensive about recommending support groups as they aren’t for everyone. They’re a great place to go if you have questions but I remember asking about a blockage once and got so scared because people said to go straight to A&E but I knew that it wasn’t that bad. I think you have to take things with a pinch of salt and maybe not go there for actual medical advice. I really like these groups though because if you have day to day questions or just want to let out your frustrations, it’s a place where people will understand.
When you have a condition which isn’t as well known, it’s great to be able to talk, and make friends, with people who also have the condition. Having a space where you can freely ask questions and talk about how you are feeling is great and on these sites there really is a sense of community and friendship. Whether it’s nerves about upcoming surgery, a question about travelling with a stoma or advice on how to tell someone about having a stoma these support groups are invaluable.
In today’s post, I thought I would share with you some of my favourite websites. There’s a mix of websites, blogs and youtube channels. I still use these websites today, two years later, because I always have questions about things or just like to hear from people who understand what you’re going through.
SecuriCare and Stomawise are both really good websites as they offer really practical advice and help. SecuriCare is one of my favourites as you know that what is on there is medically accurate, which is always a bonus. They also have a phone number you can ring on their website where you can actually talk to people.
These are my three favourite ostomy bloggers. Sam, from So Bad Ass, has done so much for both raising awareness of Crohn’s and Colitis and stomas and I love her blog to bits. Ostomonday is a fantastic YouTube series by Thalia Sky which I have found so useful. It’s also really nice to see someone else with two stoma bags because I always feel like I’m the only one with that. More Than You Bag was written by Hattie whilst she had her stoma and it honestly helped me so much when I first had my surgery as she was a similar age to me and had had her surgery just a month or so before me. Although she doesn’t write the blog anymore, it’s still up and I really recommend reading it, especially if you’re a younger ostomate.
Let me know in the comments if you have any go to places for support and what your thoughts are on online support groups.