It is said that those who are best suited for leadership or advocacy did not seek it and rather had it thrust upon them unexpectedly. This is especially true for Erin Goodwin who was diagnosed with Ulcerative Colitis in 2006 and underwent 12 surgeries over 3 years to begin a new life with an Ostomy bag. When there were no speakers for her local Ostomy Association event, she was volunteered to share her story. She found support, understanding, and relief through sharing her story and decided to reach out to more people. She began her blog, InsideOut Ostomy Life, to share her story, let others know they are not alone, and to help remove the stigma surrounding Ostomy bags. She is an inspiration regardless of whether you also have Ulcerative Colitis. We at ManageDigestion have reached out to her for an interview to get more insight into her incredible resilience and support for the digestive health community. Enjoy!
Photo Credits to insideout_ostomy Instagram.
Question: What made you want to start documenting your journey?
Answer: I’m not sure if want is the right word as it was never an intention, I am part of the WA Ostomy Association and we had a general meeting coming up and no speakers to attend. I told the committee that I thought it would be a great idea if we used local Ostomates to tell their stories, as they can be more powerful than the best professional taking in their field of expertise. It was my idea so I was one of the three volunteered to share. After much procrastination I jotted down some key points and put on my big girl undies and shared my story in front of about 30 people. The feedback and understanding was overwhelming and when I later found out about the Great Comebacks Awards run by Convatec which looked for inspiring survival and advocacy stories I decided to submit my story, what did I have to lose… Long story short, I was selected as a finalist and flown to Queensland for the awards evening where I was selected as the overall winner. So, with new found confidence, I decided to set up InsideOut Ostomy Life.
Photo Credits to https://insideoutostomy.life
Question: What is your number one tip you would give people living with a Stoma bag?
Answer: In a nutshell take it one day at a time, you are not alone, there is help out there and it does get easier.
Link to a blog I wrote about Ostomy Support Groups: https://insideoutostomy.life/ostomy-support/
Other Random Tips:
- Give your Stoma a name – I believe I named it as a way to disconnect myself from it before I left the hospital. It gave me something to get angry at without getting angry at myself.
- If you eat beetroot or drink red slushies your output will change colour, you are not bleeding internally
- Some medications will come out your bag whole, make sure you talk with your doctor if this happens to find a suitable alternative
- Showering truly naked is amazing, just be prepared and don’t have the water too hot as your stoma will burn
- Tic Tac’s make the output minty, just add one to your bag each empty or change.
- Fish is the worse smell ever whereas least KFC will come out smelling like KFC – I’m not sure what they put in those herbs and spices but they are potent.
- And lastly it’s better to laugh then cry but it’s ok to do both, sometimes at the same time.
Photo Credits to https://insideoutostomy.life
Question: What is one thing Dr’s don’t tell you about Ulcerative Colitis?
Answer: To be honest I can’t remember much of what the doctors told me about UC, it was all blur and I got so ill so fast that I never really had time to take anything in. Then there was twelve surgeries over three years and by the time that was over and I had time to review what had happened to me I was a permanent ostomate and UC was the least of my concerns. There are quite a few things I would have like to have been told in relation to fertility and permanent ostomies but that’s a whole different story.
Photography by Kelvin Chong at Image Style Studio
Hair and Makeup by Katherine Loh
Question: For those scared going to a gym/working out outside, what advice would you give them?
Answer: It took me a long time to get over the fear of hernias and even now it still sits in the forefront of my mind when training some days. Firstly, to abate the fear I got fitted by a stomal therapy nurse for a support and hernia protection belt. It took me a while to find the right one that fits well and didn’t impede my training, it’s a trial an error process. The ones I found that work best for me is the Omnigon Total Control Level 5 – 15 cm belt and the Vanilla Blush Support Vests. Once fitted correctly I went off to find a personal trainer/physiotherapist to ensure I was using correct from when trying new exercises etc. as its when you have bad from that you can do real damage. From there it’s just became about consistency. I gave up the Personal Trainer after about 3 months and downloaded some exercise apps to keep the routines fresh. I rest when my body needs and your body knows your limits so please listen to it.
To know more about Erin Goodwin and her story, check out her blog: InsideOut Ostomy Life