Living with Ulcerative Colitis and Stage 1 Colorectal Cancer: Nadia’s Life from Ostomy to Advocacy
In November 2022, Nadia, a mother and passionate advocate for digestive disease awareness, was diagnosed with colorectal cancer after living for more than two decades with ulcerative colitis. Her experience highlights both the struggles and triumphs of navigating life with chronic illness and major surgery.
Interviewed by: Taylor Scheib
Edited by: Chris Sanchez
Nadia was raised in Toronto, and her adolescence was shaped by symptoms that would later be diagnosed as ulcerative colitis, a form of inflammatory bowel disease. Her relationship with her gastroenterologist provided ongoing support, resulting in diligent monitoring, including regular colonoscopies. When her symptoms escalated and she began to experience abdominal pain, increased bathroom trips, and blood in her stool, she knew to raise concerns immediately. Despite participating in a clinical trial with close oversight, the diagnosis of low rectal colorectal cancer still came as an emotional blow. Nadia credits clear communication with her care team and self-advocacy for facilitating a timely diagnosis, a crucial factor in patient outcomes.

Nadia’s response to her colorectal cancer patient experience was shaped as much by emotional resilience as by medical treatment. Undergoing a total proctocolectomy (“Barbie butt surgery”), she faced fears about the ostomy and its stigma, yet found strength through loved ones and connections with others who had gone through similar surgeries. Support from her family, especially her husband, made physical recovery and emotional adjustment achievable, and the mental health aspect became a central focus.
Living with an ostomy has transformed Nadia’s outlook. Where she once feared leaks and body image challenges, she now embraces open advocacy, sharing her experience on social media to shatter stigma and foster inclusion. Daily life changed but improved, thanks to better control, new possibilities for diet and activity, and a passionate commitment to support others. For Nadia, the colorectal cancer patient experience is about honesty, gratitude, and the courage to live fully and visibly, regardless of scars or supposed imperfections.
Watch Nadia’s video and read through her interview transcript below. You’ll gain more insight into why and how:
- Listening to your body and fostering trust with your care team leads to earlier detection and improved outcomes
- Emotional well-being and support from loved ones are as critical as physical healing after cancer treatment
- Social stigma around ostomies can be overcome by openly sharing stories and empowering others
- Positive transformation is possible: Nadia’s life became fuller and more authentic following surgery
- Every patient’s experience is unique, but community, openness, and self-acceptance are essential for healing
- Name: Nadia D.
- Diagnosis:
- Colorectal Cancer
- Staging:
- Stage 1
- Age at Diagnosis:
- 40
- Symptoms:
- Change in bowel habits
- Rectal bleeding
- More fatigue and back pain than usual
- Treatments:
- Surgeries: total proctocolectomy, permanent ileostomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- Hi, everyone, I'm Nadia
- I’ve been living with ulcerative colitis, or IBD
- Before my colorectal cancer diagnosis
- The moment I was diagnosed with colorectal cancer
- What my surgery and recovery looked like
- After my surgery: adjustments and life changes
- My biggest challenges
- Marriage, intimacy, and teamwork
- Breaking the stigma: living well with an ostomy
- What I want others to know
Hi, everyone, I’m Nadia
I’m from Ontario, Canada. I was diagnosed with colorectal cancer in November 2022.
I am a mom. I have two kids. I’ve been married for 17 years now; I married my high school sweetheart. In my spare time, I love to cook and spend time with my family and friends.
I love advocating for digestive diseases and invisible illnesses, sharing what it’s like to live with an ostomy and colorectal cancer. I truly have a passion for that. I enjoy hearing people’s stories, sharing my own, and connecting with others.
I’ve been living with ulcerative colitis, or IBD
I was diagnosed with IBD, or ulcerative colitis, when I was just 15 years old, a couple of weeks before my 16th birthday. I lived with IBD for about 25 years before my colorectal cancer diagnosis. I went through many trials and tribulations, including medications, nutrition changes, diets, and anything to keep my disease at bay.
Editor’s note: Inflammatory bowel disease (IBD) is an umbrella term that includes conditions such as ulcerative colitis and Crohn’s disease. In this interview, the patient uses “IBD” and “ulcerative colitis” interchangeably. We’ve left their wording intact for authenticity, but note that ulcerative colitis is one specific type of IBD.
I was very lucky to have a good relationship with my gastroenterologist. She began seeing me shortly after my diagnosis, after my initial doctor moved to practice in the United States. She saw me all the way through to my cancer diagnosis. Depending on how my disease was presenting, I would have six-month or yearly follow-up appointments, and then every two years would have a colonoscopy screening.
My gastroenterologist was with me from age 15. She was there for all my milestones, like completing university, getting married, having children, going on vacations, and so much more. We built our own relationship: I’d visit around the holidays, bring my kids to appointments, and so on. After my cancer diagnosis and surgery to remove my large colon, I stopped seeing her since there was nothing more to treat, which was also an adjustment.
Before my colorectal cancer diagnosis
Before my diagnosis, I was experiencing frequent bathroom trips, abdominal pain and cramping, and blood in my stool. That was a huge red flag for me, so I knew something was wrong.
IBD is an autoimmune disease, so it affects my whole body. I often felt very fatigued, run down, and had body aches.
Before my [ulcerative colitis] diagnosis, I didn’t know much about ulcerative colitis. Even right after my diagnosis, I didn’t know too much; I just knew I had to be on medication daily to manage my symptoms. When flare-ups would occur, I had to take a different medication beyond my regular daily dose. It was a lot, especially as a teenager going through adolescent changes. But I felt supported by my medical team and my family.
Because I’d had IBD for so many years, I could tell these weren’t typical flare symptoms. I was really in tune with my body, but for many people, these symptoms aren’t always striking at first, which leads to misdiagnoses.
At the time of my diagnosis, I was in a clinical trial, being more closely monitored. My gastroenterologist was the primary investigator of that study. I could advocate for myself and was heard, which made a huge difference.
The moment I was diagnosed with colorectal cancer
The colonoscopy results were delayed for five weeks due to an accident at the lab. That uncertainty was stressful, especially since I knew colorectal cancer was a possibility.
When we finally met, my husband came with me. My doctor was emotional as she told me; then I was emotional, and we hugged.
Honestly, I was more worried about the possibility of an ostomy than the actual cancer because of the stigma I had associated with it. The negative stigma around ostomies was strong in my mind, yet the procedure gave me my life back in many ways. Living with UC was unpredictable, but I want others to know that receiving an ostomy is not the end; it’s a new beginning.
What my surgery and recovery looked like
I had low rectal cancer. Because of the tumor’s location, I wasn’t a candidate for reversal. My surgery was a total proctocolectomy, which is sometimes called “Barbie butt surgery”; they remove everything and close the opening at the back.
Pre-op was overwhelming. I didn’t understand how the surgical procedure worked; questions swirled: could I sit? Wear regular pants? The ostomy nurse was kind and offered to mark and fit a stoma pouch on me, but I wanted nothing to do with the pouch at first. My husband was supportive, and the hospital team was reassuring. I benefited from having two friends who had just had the same surgery with my surgeon; we really connected.
The fear of the unknown was tough, but my husband helped me communicate everything I was feeling. The morning of my surgery, I was in good spirits because research suggested my mindset could influence recovery. Even as I walked to the operating room, my surgeon chatted with me, noticed my tattoos, and made the atmosphere positive. The anesthesiologist told me to “think good thoughts,” which helped tremendously.
After my surgery: adjustments and life changes
When you have IBD and are symptomatic, you might go to the bathroom 20 times a day. In my hospital room, my roommate was there with a UC flare and kept darting to the bathroom. I realized, sitting in my bed, that feeling was gone for me. Even though I had to learn how to live with and manage an ostomy, I was grateful I no longer dealt with unpredictable flare-ups.
Over three years, it was an adjustment. The beginning was tough. I had lots of body image issues. I got rid of tight-fitting clothes that I thought showed my pouch. I used social media to show that “you can’t even tell that I have a pouch.” There’s a hashtag: #BagWhatBag, because it’s often invisible.
On social media, everyone knew I had the pouch, but showing it took some time. Eventually, I followed a friend who was more open about showing her ostomy online. When I shared mine, it was freeing. I felt truly myself. Once I started posting photos and fun reels (like “sun’s out, bags out”), it created a freeing sense of openness. From then on, I shared more, even on vacations and at the beach.
A brand I worked with invited me to participate in a photoshoot for their digital marketing. I was honored. It was a chance to normalize ostomy life. Some creators receive negative comments when showing their bags, but our response is always: “This is a life-saving procedure. Without this bag, we wouldn’t be here.”
My biggest challenges
The biggest obstacles are unplanned bag leaks, like at work or a family cottage. Once, just arriving at work, the bag leaked and had to change my ostomy at work; thankfully, before drinking coffee, which worsens everything! I’m a super planner, but leaks taught me to go with the flow. I was lucky that my hospital appliance fit well and avoided leaks in the first year, so adjusting was easier.
Adjusting to in-office work after remote roles was tough, but problem-solving helped me move on. The first year, leaks were rare, which helped me appreciate rather than resent my ostomy. Finding the right appliance is key. Once you do, most leaks and skin issues resolve.
There’s nothing wrong with your stoma or your ostomy or your body or your skin. It’s just finding the product that is right for you.
Marriage, intimacy, and teamwork
Recovery meant pausing intimacy until wounds healed.
During initial recovery, I couldn’t manage pouch changes myself. My husband did all of them and often helped at night, supporting me when I had to wake to empty my active ileostomy.
He would say, “If I’m here, why do you have to do it alone?” That support, both mental and practical, made everything easier mentally.
Breaking the stigma: living well with an ostomy
First, here’s a tip: find the right ostomy appliance and fit. That’s a game-changer. The right fit means fewer leaks and better skin health.
Second, take things one day at a time. Feel your feelings, like annoyance and frustration, but don’t let them take over your day or week. Focus on gratitude for this life-saving procedure.
Breaking the stigma means sharing my story and showing everything I can do, like swimming, traveling, working out, and more. Yes, some limitations exist, like diet and specific activities. Overall, though, my diet is much more inclusive now. I can eat spicy food now, which was impossible before.
Even though there are some not-so-great days, there are far more days that are better.
What I want others to know
Wear your ostomy loud and proud. It saved my life and gave me my life back.
I can do things I couldn’t during UC flares, and productivity at work has improved.
Trust the process. Every day brings challenges, but it also brings wins. Focus on small wins: your first independent appliance change, a longer walk, or any little goal.
Don’t take on too much at once; don’t overwhelm yourself. Set small goals, enjoy the journey, the process, and have faith.

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