It's been more than three years since that game-changing Facebook post from Bethany Townsend came out (forever grateful to you, B), so it's about time for another celebrated ostomate to have the spotlight. Krystal Miller has garnered national attention for showing off her ostomy on social media, and she's not backing down (or apologizing) for her awareness crusade.
The stigma surrounding ostomies doesn’t bother her, writing in a post for The Mighty: "It’s become my new ‘normal’. It’s 10 years this year since I had my first surgery. It’s now all I know, and it’s just not even an issue anymore." Besides, it's not like she's waltzing into restaurants with her pouch out, right?
For anyone new to our lovely community, Krystal is 33-years-old and lives in Perth, Australia with her husband Shannon and two children, Lukas and Arabella. She’s respectfully known as “Bag Lady Mama” which is also the name of her website and Facebook page, where she openly shares the reality of her life as an ostomate living with a chronic illness while juggling work and family.
At age 15, Krystal was diagnosed with Crohn’s disease and after eight years of no relief from painful symptoms, she had ileostomy surgery in 2006. For the past two years, she’s advocated to raise awareness of Inflammatory Bowel Disease and change the stigma attached to living with an ostomy. Her work empowers women (and men) to love their bodies, ostomy bags, scars, and all.
No subject is off-limits in her posts, nor was it during our interview below. Readers be warned: Krystal does swear from time to time, especially when she’s mad… or happy… or tired. LOL. In fact, she's even coined the hashtag #bagbitchesrock. Krystal says, “Swearing is my fave thing to express myself. I love the word f*ck, it’s so passionate and expressive and I love the shockingness of it!” Her 36,000+ followers don’t seem to mind a bit because they love her raw, honest feelings and appreciate that she’s not afraid to be herself.
Q: Do you find it challenging being a mum with a chronic illness?
Krystal: “F*ck yes!! Being a mama is challenging enough, but adding an illness is like beyond control! I get too frustrated when I’m tired, and I'm tired all the time. I also have a very challenging, but beautiful, little boy who is way too smart for his own good!”
She has some tips to share for moms and dads out there struggling, “We need to stop kicking our own asses with the guilt and accept that we’re not going to be perfect all the time, but love our children with all the perfection in the world.”
It’s good for parents to allow themselves a break from perfectionism, like during dinnertime Krystal shared, “I may feed my kids take-out two nights in a row or spaghetti toasties without guilting myself. They think it’s awesome anyway!”
What’s your best piece of advice for self-care?
K: “Have a good ole ‘cry and bitch’ session, that’s my self-care! I’m a firm believer that everyone should be open and honest with their feelings, no point holding it all in! Having said that, you also need to articulate what you’re feeling without being accusatory.”
How many tattoos do you have?
K: “I have 6 tattoos, but have technically been tattooed 7 times as one was a cover-up. They all have a special meaning, two of them are for my children. I wanted each one to symbolize parts of the journey in my life. They all represent growth and strength.”
She told me that there is one more planned. It’s going to be her favorite quote that embodies a voyage down her arm.
By the way, what is your favorite quote?
K: “I love this inspirational quote!”
The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.
– William Arthur Ward
“I’m a realist. Shit’s real. I can’t and won’t pretend life doesn’t suck balls sometimes, but I’ll adjust my sails and weather the storm.”
What was the most difficult thing you’ve gone through?
K: “I almost died from being septic back in 2012. That’s one I don’t like to think about too often. Even five years on, the trauma and hurt felt from that experience is still raw and painful. I was 28, and Lukas was only 6-months-old. The fallout from that time impacted every aspect of my life. I had to stop breastfeeding while I was in the hospital for three weeks. Mentally, I wasn’t ready for a second surgery. It was completely different from my first ostomy surgery. My body was scarred for life. I couldn’t see anything good about it, and it just kept letting me down. That time in my life created so much fear and devastation, all because doctors ignored me and I was too weak to fight them. This taught me so much strength. No one would EVER ignore me again. I will fight before it got to that point next time. I would demand they listen and if they didn’t I’d find someone who would. I learned that I had to be my own advocate, more so than I’d ever been before.”
Why did you start your blog and Facebook page?
K: “After I learned to love my own body and love myself again. I wanted others to know they’re not alone, and hopefully help anyone who is struggling to accept life with an ostomy. I talk about all the shitty stuff that no one else wants to. I believe this happened so that I could share my life and story with the world to inspire others.”
Krystal also has another mission. After Lukas was born in 2012, she suffered four miscarriages before giving birth to Arabella in 2016. She told POPSUGAR, "I felt that these photos would be great to share with other mamas or women who are trying to have babies with an ostomy. There's not a lot out there about successful pregnancies or natural delivery. I wanted others to know that you can have a baby naturally despite having had surgery."
On Instagram, you shared a candid image of yourself from 10 years ago. Why is talking about mental health important to you?
K: “I remember every single moment that I’ve been consumed by a darkness that I haven’t known how to escape. Because of that, I am not afraid to ask for help. You should not be afraid to ask for help. What would you do for your friend or loved one if they were suffering? Would you comfort them, hug them, love them and be kind to them? Of course, you would. So why not do this for yourself? There is NO shame in seeing a counsellor. If you’re struggling (for whatever the reason) please know that licensed counsellors are the BEST people to help you find strategies for coping that work. Every counsellor is different, and some won’t be a good fit. Don’t settle for somebody who’s not a match for you. Find your perfect match.”
What products do you recommend to other ostomates?
K: “I give credit to my friend Lisa (also an ostomate) for introducing me to lacy granny panties! They’re my favorite underwear and help my ostomy bag feel more secure and comfortable. They’re the best thing I own! My previous undies were cutting off the bag at the top, causing it to puff up.”
Every so often Krystal will post pictures of support garments for hernia prevention and even wears them under dresses. She says, “Hernia belts are a MUST!! Especially if you are pregnant, doing ANY fitness or sport, or new to having an ostomy.” She attended the Bowel of the Ball in Newcastle, Australia last August where she was the guest of honor looking absolutely gorgeous in this red form-fitting, off-the-shoulder gown.
What inspires you in life?
K: “My family. They keep me going and inspire me to do more for a better world. I want to leave a legacy for them. I want my kids to be proud of me. I want them to see me all over the news, media, internet and say… “that’s my ‘bag lady’ mama!”
Mom life can be demanding, but throw in chronic illness, an ostomy, nursing school, and work — you’ve got yourself quite a handful. Without a doubt, we’re certain that your family is proud of you and we are too! You have brought so much needed positive awareness to ostomies, IBD and mental health. From me to you Krystal, thanks for being so f***ing amazing!
A version of this article first appeared November 2017 in The Ostomistic Life.