Written March 28, 2022, by Jess to read at a stoma medical presentation.
Hi, I’m Jess, and I live with a permanent ileostomy. My stoma, Romi, was created on July 13, 2021, through a laparoscopic pan-proctocolectomy with end ileostomy. Romi is my little lifesaver, the part of me that ended years of relentless pain from fistulating Crohn’s disease and gave me back a future filled with energy, clarity, and purpose. Today, in 2026, I’m sharing this expanded version of my story because I know how isolating the journey can feel, especially in Australia and New Zealand, where open conversations about ostomies remain limited. No two paths are identical, but by speaking openly about the good, the bad, and the ugly, we can reduce shame, build community, and help others see that life after surgery can be vibrant and full.
I want to start with deep gratitude. To the stoma nurses, gastroenterologists, surgeons, volunteers, family members, partners, and online communities worldwide: you are the real heroes. You provide not just medical care but hope, practical guidance, and the reminder that we deserve to be loved and supported exactly as we are. Medical teams make extraordinarily difficult decisions, sometimes literally holding lives in their hands, and they do so with compassion. We are all doing our best in challenging circumstances, and that deserves recognition.
I was lucky: I had time to prepare. Many people face emergency ostomy creation with no warning. For me, the road began years earlier in Launceston, Tasmania. After a long battle with misdiagnoses, unexplained pain, and repeated perianal fistulas that led to near-sepsis episodes and close to 100 procedures (drainages, setons, examinations under anaesthesia), my gastroenterologist, Brent, finally confirmed fistulating Crohn’s disease via colonoscopy three years before surgery. The relief of a name for my suffering was bittersweet; it meant accepting that my body was no longer responding to medications. Biologics, immunosuppressants, steroids, over a decade of trying, my system had built tolerance, and the fistulas kept returning.
When Brent sat me down and said we’d run out of options, recommending laparoscopic pan-proctocolectomy with permanent ileostomy, I felt the room spin. Tears came immediately. He was gentle: “You have time, 6 to 12 months to think it over, but this needs to happen.” That window was a gift. I went home and let the reality sink in slowly.
The thoughts were relentless. No more conventional toileting: output would now come through a bag on my abdomen. Forever. (Reversal is sometimes possible, but not in my case due to the extent of removal.) I grieved the loss of bodily “normalcy.” As an active person who loves the beach, travel, gym sessions, and feeling strong, I panicked about visibility and judgment. Would people stare at the beach? I’d spent years travelling Australia and overseas, beaches in Bali, Europe, the Gold Coast, and never once noticed a stoma bag. Would I become “that person”? How would bikinis work? What about intimacy? Who would want a partner with a bag attached? Would I ever feel sexy or desirable again?
I felt selfish for fixating on aesthetics and confidence when the surgery would save my life. But those fears were real. I’d push them down, then they’d resurface: Why me? I eat well, train hard, stay fit, but why is my body betraying me like this? During those months, I researched obsessively: ileostomy forums, medical sites, YouTube videos from ostomates. I avoided reaching out personally. I wanted to stay in my focused zone, processing without external opinions swaying me. But I learned enough to know the adjustment would be profound.
What I couldn’t fully grasp then was the trade-off: trading chronic, debilitating pain for a new normal that would eventually bring freedom.
Surgery day, July 13, 2021, during a strict COVID restrictions time the world was in. No support person allowed. I walked into St Vincent’s Hospital alone, carrying a heavy mix of fear, grief, and quiet resolve. I was saying goodbye to the old Jess. Nurses were efficient and kind as they prepped me. I chatted nervously, always do, wondering if I’d talk under anaesthesia (it makes me chuckle now). Waking up, the transparent pouch was a shock. Even prepared, seeing output move through it felt alien and confronting. I believe healthcare teams could prepare patients better for that visual moment, more photos, simulations, or counselling on the emotional hit.
The initial hospital stays lasted 16 days. Pain was intense; nothing touched it some nights—fentanyl, morphine, Endone, Palexia. An MRI showed a twist or narrowing, so back to theatre for stoma revision to widen the opening. Surgeon David Clarke fixed it beautifully. But recovery wasn’t linear. Dehydration hit hard (ileostomies output high-volume liquid), leading to two emergency readmissions. One night stands out: phantom pains, vomiting, dry heaving, passing out. My hand ballooned from a ruptured cannula during ambulance transfer, and morphine never reached my vein properly. My then-6-year-old daughter Everleigh stayed calm, telling my mum, “Nanny, call 000!” (She said “911” at one point, funny in hindsight.) I begged Mum to take Evie away so she wouldn’t see me like that. In agony, I whispered I’d made a mistake, that I couldn’t live this way. Speaking even one sentence exhausted me.
Early weeks blurred into fatigue. Stringing words together felt impossible. My first bag explosion came at 12 weeks: 1 a.m., waking to warm sludge running down my belly, legs, across carpet and tiles. I stripped, binned clothes, showered in the dark, and mess everywhere. Humbling, messy, but educational. Leaks and skin issues followed, teaching me to adapt better barriers, timing changes, and listening to my body’s signals.
Yet milestones arrived. Seven weeks post-op, I returned to the gym, cautiously at first. David had warned that heavy lifting might change, but I could rebuild. I pushed to an 80kg squat and felt electric: Jess was returning. Pilates strengthened my core without strain. I joined fitness challenges, won one, and reignited my passion. Pain disappeared; my mind cleared like never before, no more fog from chronic inflammation or meds.
Body image took longer. The bag felt like a foreign intruder. Mirrors were hard. Intimacy in a new relationship added layers of vulnerability. I searched for supportive underwear, cute covers, but options for women are scarce. Stressful, but my partner’s patience and reassurance helped immensely. We took it slow: communication, laughter, focusing on connection over perfection. Today, intimacy feels natural. Romi is just part of me.
Daily life? I empty the bag 4–6 times a day and change it every 3–5 days. Black Aurum bags from Welland changed everything, less “medical,” more discreet and confident. Jan (my stoma nurse) let me trial them first in Australasia; I’ve never looked back. Manuka honey seals soothe skin. Products matter; they bridge medical need and feeling human.
I named Romi to honour this life-saving part of me. Naming turns fear into familiarity, something to celebrate rather than hide.
Australia and New Zealand lag in ostomy awareness. Too many hide in silence, ashamed of “poo” talk, fearing judgment. Stigma around bodily functions persists, and visible differences get stares or questions. We need change: school education on chronic illness and diversity, better marketing of adaptive clothing/underwear, mental health support integrated with stoma care, and more diverse product options (especially for women, intimacy, and active lifestyles). Advocacy groups like the Australian Council of Stoma Associations help, but broader conversations, in communities, workplaces, and beaches, normalise it. Living actively is possible: gym, swimming, travel, motherhood, and intimacy. I parent Everleigh (now 10) with openness—she knows Romi keeps Mummy healthy.
Gratitude overflows: Brent for diagnosis and honesty; David for surgical skill; Jan and Emma at Welland for products and ambassador opportunity (I’m proud to raise awareness on a larger scale). Queensland Stoma Association, family, friends, and online ostomates. Angels exist, they wear scrubs, volunteer, have four legs, or show up in tough moments (shoutout to a Netflix Afterlife clip that reminded me: real angels pay rent and do good here on earth).
By 2026, life with Romi is liberated. I’m healthier, more present, and passionate. Through BONEnBLOOM (www.bonenbloom.com), I untangle wellness, rooted in the lived experience of chronic illness, surgeries, and recovery. It’s about nourishing body, mind, and spirit without shame or toxic positivity: ethical products, honest education, and community. BONEnBLOOM was born from refusing to give up on a full life, turning adversity into wisdom.
To anyone facing this: You are not alone. The early days are brutal, painful, doubtful, bag explosions, but they will pass. You’ll adapt, reclaim strength, and find joy. We deserve confidence, education, worth, and to feel fully ourselves.
Here’s to shedding light across Australia and New Zealand. To change, accept, and blooming boldly.
Thank you for reading part of the story.
Jess x
Read: Ostomy Funding and Awareness. A letter to Mr Guy Barnett by Jess Skipper, Advocating In Tasmania.
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