“An ileostomy is a surgery that makes a temporary or permanent opening called a stoma. A stoma is a pathway from the lowest part of the small intestine, called the “ileum,” to the outside of your abdomen. This helps solid waste and gas exit the body without passing through the colon or the rectum.”
Does this description sound both gross and a little X-Files-ish to you?👽 It does to me too. It’s been five years since my cancer surgeries, (for Peritoneal Mesothelioma) and I still have a tough time accepting my stoma. I know today’s ethos is all about celebrating and loving your body the way it is, but I truly struggle to do that.
Yet, since there’s nothing I can do to change the situation, I gave my stoma a name: Ron. Ron is actually a beautiful shade of red. If Ron were a lipstick he would be Sephora’s Best Seller.💄 He lives two inches below my belly button and three inches to the right of it. He’s smooth and shiny and he’s shaped like a tiny mound.
Ron moves too – wtf? Sometimes he’s smaller and almost flush with my tummy, other times he enjoys showing off and gets bigger and longer. The first time he pulled that trick I was terrified and yelled out to my partner to bring me a measuring tape so I could measure Ron in the shower.🤣 Mostly though he’s about the size of a small tootsie pop – remember those?
Ron is Celebrity-style high-maintenance. He requires a special 3-piece outfit on him at all times, which includes a small beige bag 👜 to collect liquid-y waste. I empty the waste or, “output,” into the toilet, ten or more times per day.
Ron is extremely picky about food. I used to eat a mostly plant-based diet, but Ron let me know – in dramatic and painful ways – that eating vegan was not an option. Most fruits and vegetables give him trouble, particularly their skins.🍅 Nuts, seeds, legumes and beans are also difficult for him. There is literally almost nothing in a plant-based diet that he likes except green juice, smoothies and creamy vegetable soups.
What does Ron like to eat? Basically he loves hospital food. Give him a piece of plain chicken with mashed potatoes and a tiny cup of ice cream 🍨 and he’s the happiest little red intestine mound you’ve ever met. But if you dare try to fake Ron out with foods he doesn’t approve of he will make you suffer.
Once, in a moment of weakness and right before a Flaming Lips concert, I decided to eat half a grapefruit – one of my favorite fruits. I chewed it carefully, (with ileostomies you have to chew everything a million times), but I forgot that grapefruits are encased in those little linings/skins. Well, halfway through the concert Ron lost his fucking mind!🤯 He erupted with thick paste, resulting in his 3-piece outfit peeling off my skin, causing gross mayhem.💩
I must say though, if ever there were a perfect concert to have a stoma accident, it would be The Flaming Lips. Everyone was high and dancing, there were unicorns 🦄 and I think the singer was in a giant clear ball, so no one noticed me racing to the bathroom.
I always travel with supplies because you just never know. Luckily the bathroom had great speakers, so as I cleaned myself up and put on a fresh new outfit for Ron, I was still able to enjoy the concert. Though I can laugh about it now, accidents are stressful and they make me feel vulnerable. In all honesty, I am never fully relaxed when I’m out and that is emotionally exhausting.
Body Image & Fashion:
Most people I know have a favorite body part that they often highlight when they dress. Maybe they have legs for days, a long graceful neck, or defined yoga arms…I used to like my mid-section. I didn’t wear crop tops, but I liked high-waisted, 70’s style wide-leg jeans with a top that hit the waistband. I wore lots of other styles too, I enjoy using clothing as a form of creative self-expression. Now I’m no longer able to wear anything fitted.
My stomach is split in two sections, separated by a 12 inch scar (the scar doesn’t bother me). The left side of my tummy is its normal self, but due to surgery, my right side is now slightly rounded, as if it just binge-ate an entire baguette. 🥖 I hate it. While I don’t spend my days obsessing about it, I do sometimes feel sad. Also, I’m sick of wearing long, flow-y tops.🤦🏻♀️
Ultimately though I’m very grateful to Ron.🙏 Because Ron, along with my incredible surgeon & HIPEC & lots of luck, have allowed me the privilege of living much longer than anyone expected.
A final few ileostomy facts🤓 :
– There is no smell.👃🏽 No one will ever smell your stoma or bag.
– Ileostomy supplies are extremely expensive.💰
– You can swim and play any sports you want.🏄🏻♀️ There are accessories to help keep the bag secure.
– Partial bowel blockages are fairly common & scary. I’ve had 6 of them in the past 8 months, so my Dr. is investigating.🔍
So that’s what it’s like living with an ileostomy, for me. It’s Ron and I together for as long as I get to live.👫
Ron’s 3-piece outfit:
Stretchy “donut,” it goes around Ron/stoma to help protect the stomach’s skin from rashes.
The “flange” (redheaded Lady is standing in for Ron/stoma 🤣) This adhesive flange goes over the stoma & over the donut and sticks to your tummy. (You cut the centre to fit your stoma)
Finally, the bag, which snaps onto the flange.