Helplines and on-call stoma nurses are all good in the day but if you find you have a problem or concern about your stoma or stoma bag, in the middle of the night or at the weekend, who can you turn to?
I normally find myself in a pickle with my bag or stoma when the stoma nurse is off duty; and that’s why I love online resources like social media. There are people of all ages and with all types of experience out there that are happy to share their tips.*
Facebook is great because there are support group pages, run by and for individuals with stomas. Quite often, these are closed (private) pages that you have to sign up to so you don’t have to worry about anything to do with your stoma becoming public knowledge on your wall for everyone you went to nursery with to see.
These group pages are useful, not just for advice but if you need to vent about your situation. There will always be someone that has gone through the same or something similar and that can be especially reassuring when it’s the middle of the night, dark and you feel all alone.
My personal favourite social media platform is Twitter. At first it can seem really intimidating because it is a bit of an alien concept when you are used to Facebook, but Twitter is great if you need a quick bit of advice or just to remind yourself that there are people out there that are experiencing the same thing, but you don’t want to get too involved.
Recently when my stoma site was really sore and my bag kept leaking, I was at a loss as to what to do next (even though I’ve had my bag for nearly 6 years) but after a quick tweet sent into the twittersphere, people I don’t even follow were offering their advice; and it worked!
Twitter also provides quick updates about medical and appliance advances as well as campaigns such as #GetYourBellyOut. The limit of 140 characters per tweet allows you to get a summed up version of the information with the option to click on a link to take you to the website or blog. Prominent ostomy and healthcare bloggers often use twitter to spread the word about their latest blogs, so this is another great way to glean information when you are in a bit of a rush.
Make friends, get support – start with myself and SecuriCare!
I have made some great ostomy online friends through both Facebook and Twitter and have found the support network to be amazing, especially if you find yourself stuck in hospital or at first when you’ve just been told that you need to have a stoma. Hopefully after reading this blog, you’ll be inspired to take a look and see what the online ostomy communities can offer you too (if you’re not already involved!)