My name is Emma and I was diagnosed with Crohn’s Disease in 2004 at the age of 8 and have since tried every medication and been through multiple procedures to achieve the beloved status of remission.
Back in 2013 I became an ostomate for the first time. The plan was to resect a part of my large bowel and create a stoma for a few months while the bowel healed and was reconnected 3 months later. I had a boyfriend at the time (who is now my husband) and just enjoyed my life, dismissing the fact I even had an ileostomy bag. I didn’t have the confidence and therefore didn’t share any of my journey with my first ostomy.
It wasn’t until April 2019 that my health started to decline considerably again. My inflammation levels were sky high, I was in serious pain and started dropping weight until I was stick thin. I decided at that point I had had enough and wanted to have the same surgery to bring my bag back again for quality of life – so I did exactly that. By December 4th I was an ostomate for the second time and am currently enjoying every second of it.
I have a new life. I started off being gentle with myself, celebrating the little victories. Overtime I figured out which bags liked my skin, which ones I felt comfortable in. I currently use all things Coloplast. Their bags, adhesive spray, protection rings around the stoma. Their products are my favourite! I’m also a Registered Nurse so I needed something to ensure my ostomy would be okay while I cared for my patients on the ward. My Stomal Therapy Nurse decided before leaving hospital post-surgery she would order me some of the Omnigon Support Garments so I would be supported to go back into work when the time came. I now use my Omnigon briefs for everyday use and my belt religiously at work and when I exercise to prevent hernias. I am so thankful to my surgeon, to my nurses, to Omnigon, Coloplast and to the WAOA and all the support in between.
Being an ostomate is the best decision I made for my health.
Even though my stoma is not permanent I won’t be giving it up any time soon. Nobody would give up quality of life. Crohn’s is one of the many invisible illnesses and having a stoma has taught me so much about myself. Through my Instagram @stoma_susie, I have found a way to educate, inspire and raise awareness to #invisibleillnesses. There is an undeniable stigma around having “a bag” and is quite often viewed as being a negative thing. Yes, it is a big change.
But if I’ve discovered anything about myself it’s that I am beautiful, strong and worthy – bag or no bag.
I hope that there are people out there reading this that are encouraged and find their voice. Know that you aren’t alone in your illness.