Sharing what you have been through can help others as well as yourself
There is a quote I found on Pinterest by Sue Monk Kidd that says “Stories have to be told or they die, and when they die, we can’t remember who we are or why we’re here.” I think it’s really fitting for ostomy awareness as if we don’t talk about what has happened to us, how will medical professionals be able to perfect procedures and treatments? Or more importantly, how will we learn to better support each other?
Being an advocate for ostomy awareness is really important to me, but I and other advocates can’t help people if they don’t talk about what they are going through. It doesn’t even have to be written down, as we all know that spoken stories can be just as helpful for people.
No matter how long we have been ill for or for what reason we have been ill, talking or writing things down can help you deal with your experiences; I certainly have found this to be the case for myself. Sometimes just listening or reading someone else’s experience will allow you to be able to work through your own issues and feel less alone.
Sharing your experience online
You don’t have to become a blogger, you can also use online forums and support groups, read and comment on blogs or join in with the live chat on The IBD and Ostomy Support Show (which I help to run).
The IBD and Ostomy Support Show is live recorded every Thursday at 8pm (GMT). They cover all forms of stomas and the reasons behind them, not just IBD. Louise has Crohns and is on her second ileostomy awaiting for it to be made permanent - her first stoma was originally from her bowel perforating during childbirth. Natalie has a temporary ileostomy due to Crohns and has other issues with her bowel plus Arthritis and Iritis. Steve offers the male perspective of having an ileostomy due to Ulcerative Colitis and also suffers from Arthritis. Rachel has an ileostomy, which has prolapsed beyond repair, plus a urostomy from Pure Autonomic Failure. We cover a range of different topics using interaction from the viewers to inspire us to talk about our experiences… both good and bad!
Sharing your experience in person
If you fancy more of a face to face tangible talk about your feelings, see if your stoma team have a local support group. We didn’t have one in our area but my stoma care nurses had been barraged by myself and a couple of others to start one, and our nurses got us in touch with each other which helped us to set up a group local to us to connect with other ostomates.
There are also buddy systems around the country where you can connect with others so ask your team if it is something they do. Also keep an eye out for any stoma events that may be running in your area.
You don’t need to feel alone
The point of this post is that you don’t need to feel ashamed or alone with what you have gone through and/or are going through. Life is a journey with its many twists and turns, but talking about your journey becomes a story someone else can probably relate too and can help. So next time life throws you a curve ball shout “PLOT TWIST!” and keep going forward because the only way is up when you feel like you have hit a new low.