You may not know this, but May 19th is World Inflammatory Bowel Diseases (IBD) Day.
This day, and the entire month of May, is dedicated to raising awareness of inflammatory bowel diseases like Crohn’s and Colitis and funds to support those suffering from them.
Our founder, Ashley has Crohn’s and is passionate about advocating for IBD. Ginger Sue reached out to Ash to share her story so she could continue to spread awareness about IBD through the month of May and beyond.
Let’s get into our chat with Ginger!
Thank you for reaching out to us and sharing your experience with inflammatory bowel disease! How has your battle with Crohn’s impacted your life?
My battle with Crohn’s has made me humbler than I ever thought possible. I've always considered myself to be a non-judgmental human, but since fighting for my life in silence, I've come to realize that we can never make assumptions about what people might be going through. Because my illness isn’t visible, people don’t know about it unless I open up and share. Nowadays, if I hear someone passing judgement, or commenting on someone's body or physical behaviors, I try to remind them that some struggles aren’t obvious, and we can’t judge without knowing the full story.
Crohn’s has given me a voice to inspire others in a way that I'm not sure I would have gained had I not become sick. I want nothing more than to be a role model for other people suffering with IBD who need a boost of confidence to love themselves—even if that means having to get an ostomy bag to save their life.
Inflammatory Bowel Diseases (IBD) are often called “invisible illnesses.” Why is visibility for illnesses like Crohn’s and Colitis important?
We suffer in silence because no one can see our sickness, and we often also silence ourselves. Before I received my diagnosis and had my ostomy surgery, I had never heard of IBD before. I later found out my aunt had an ostomy her whole life, but because talking about poop is somewhat taboo, these conversations just never happened. The added stress and discomfort associated with IBD can be confidence crippling for anyone. I have decided to speak up and stop hiding my ostomy bag to share the message that my body is just as valid and worthy as any other.
When I had my surgery, I had no one to look up to or confide in, so I made it my mission to ensure I could be that for anyone else going through my same journey. I want to normalize this disease and let those suffering know that our invisible illnesses do not make us invisible. Conversations around IBD can be awkward, but that’s exactly why we need to have them! Everyone poops, some people just do it through their abdomen like me. Stereotypes and media have led people to believe that ostomy bags are something reserved for the elderly. The truth is anyone at any age can become sick enough to need one. I would love to see more representation of ostomy bodies in the media to not only normalize them, but to empower people with IBD to embrace their bodies and wear whatever they want.
What’s most challenging about shopping for clothing with an ostomy bag?
When I first started shopping for clothes after my surgery, I thought I would never be able to wear jeans again. While I didn’t for about three years, I later discovered maternity denim on a shopping trip with my pregnant sister and cried tears of excitement in the store. The elastic panel on the tummy allowed my bag to fill and do its thing without being intruded—I wore them for years! I also found that high-waisted anything was my best friend. The key to clothing with an ostomy bag is confidence; we can still wear whatever we want as long as it’s not putting too much pressure on our abdomens to interrupt output. My most vulnerable moments with clothing come when anything is too tight around my tummy and shows off the imprint of my bag/flange ring. It draws attention to it, and I feel self-conscious that people are noticing.
You recently received your first Smash + Tess Romper! How do our Rompers support your daily life as a busy mom?
I AM IN LOVE! I can roll out of bed, slip it on and never have to fuss with my clothes again throughout the day. From slippers, to sneakers, to a sexy pair of heels, I can dress it up or dress down while still being as comfortable as can me. As a stay-at-home mom, I'm constantly cleaning my house during the day, and my Romper stays in place and keeps me cool and comfortable. Now I understand why we dress babies in onesies! Rompers are SO comfy!
As an advocate for IBD awareness, what do you wish you could share with others struggling with these illnesses?
Speak up, and don't suffer in silence. You never know how many people you could impact by sharing. Many of us, particularly women, are afraid to talk about our illness because it is rooted in something society tells us in unsexy or dirty, which is poop, of course. We all do it and sometimes we need extra help, like I do with my ostomy bag. I know there are people who have chosen to die instead of getting an ostomy because they are afraid of judgement or not being able to find love afterwards. I am proof that not only can you have a thriving marriage, but you can also have a thriving sex life, have babies, and raise them all while having a disabled body. Life goes on, it just goes on differently than before. Most importantly, it goes on pain-free.
How do you find hope or relief when you’re in a flare up or a tough time?
A hot bubble bath is my go-to when a flare pops up, and I also keep hot water bottles throughout my house if I need a quick fix. I find flare ups often happen when I have over-exerted myself, so I try to stop, relax and listen to my body. Music is another great escape for me— I'll pop in my headphones and dive headfirst into another world to take my mind off the pain for a while. It's important for me to tell my husband when I am flaring so he can help take some things off my plate and give me space to regain my energy. I’m never afraid to ask for help when I need it.
If you could design the perfect piece of clothing for folks with IBD, what would it look like?
High-waisted leggings and bike shorts have been essentials for me. I feel most comfortable when fabric hugs my abdomen and protects my ostomy. When I’m having an active flare, I don’t want to wear anything tight or restricting so my Romper is my go-to. Because they are flowy around the mid-section you can’t see my ostomy, and one layer to take off when you have to go to the bathroom is ideal for anyone with IBD!
You wake up on Sunday morning with nothing on the agenda—what does your perfect day look like?
My perfect morning would start with getting up at least an hour or two before my family does so I can get some alone time in. I would make a pot of tea, wrap myself up in a fuzzy blanket in my sunroom, look through emails then watch a few episodes of Schitt’s Creek or Gilmore Girls in complete silence. As a stay-at-home mom, it’s tough to make time for me, so when I do I like to milk the heck out of it! After a solo morning I would spend the day watching movies with the kids and having conversations over coffee with my husband. A glass of wine and a charcuterie board after the kids go to bed would be the cherry on top, followed by an evening of watching anything about UFOs or the paranormal.
If people want to learn more about Crohn’s, Colitis and bowel diseases, where could they go to find resources or offer support?
Crohn’s & Colitis Canada’s website is a super helpful resource with lots of great information. You can read up on all IBDs and learn how to get involved to support them in your community. Most regions have their own local chapter group that hold monthly meetings for those suffering with IBD. Camp Got2Go is a summer program created for kids with IBD to connect and have fun together. I will be a camp counsellor there once in-person camps are being held again and I can’t wait to inspire and educate these kids. I highly recommend checking out the Crohn’s & Colitis Canada website if you know anyone with IBD as it can show you everything from diets and meal plans to treatments and government-funded programs. Finally, The Gutsy Walk is something I participate in every year that raises money for Crohn’s and Colitis research—every donation counts!
Thank you so much for sharing your story with us, Ginger! Through the month of May, you can add a donation to Crohn’s & Colitis Canada at checkout. Stay tuned for more in our IBD Awareness series!