Embracing Life After Cancer and Stoma Surgery

Jillian Matthew shares her transformative journey from a bowel cancer diagnosis to a full, active life with a stoma. She discusses how she found the right pouch, regained her health and fitness, and became an advocate for ostomy awareness.

Learn how Jillian adapted to her new life with resilience and support.

In March 2020, at the start of the COVID-19 pandemic, I was diagnosed with bowel cancer. The timing couldn’t have been more challenging as the world was going into lockdown. There were limited face-to-face medical appointments in the UK and uncertainty around hospital services. I also had to isolate myself, so I couldn’t see family and friends (thank goodness for video calls!).

Over a period of three weeks, I received my diagnosis, found out I needed an ostomy, and had surgery. Not a long time to get used to the idea of having a stoma! However, I was relieved that my cancer prognosis was promising and grateful that I could undergo treatment – especially with everything else that was going on. I accepted that I needed a stoma. I really had no choice. It saved my life.

Creating “Rosie the Stoma”

On the morning of my ostomy surgery, the consultant came to see me, checked that I didn’t have COVID symptoms, and asked me to sign my life away. I had an abdominoperineal resection (i.e., the removal of my anus, rectum, and part of my large bowel) and formation of a permanent colostomy. The nurse who was with me when I first saw my stoma was brilliant and had a big impact on how I reacted to my stoma. I wasn’t sure how I would feel when I first saw it, but her first words were, “It’s beautiful, it looks like a rosebud!”. And so, I named my stoma “Rosie”.

The recovery nurse was also fantastic. She encouraged me to push myself (within reason). So, I underwent active recovery, eating solids the day after my surgery (the best toast and tea ever!) and getting up and walking around (more of a shuffle initially). Although I had keyhole surgery on my abdomen, I had a large perineal wound and was hooked up to a drip, drain, and catheter – a lot to coordinate! The nurse supervised my first stoma bag change to give me the confidence to do it myself. This set up the “positive and can-do” approach that I took from then on.

Leaving the hospital and finding the right stoma bag

Although I had follow-up from the bowel cancer team, I did not have ongoing support from a stoma nurse. I had to find out what ostomy pouching system would work for me and what would best support my recovery. I didn’t get any advice or information about stoma products and suppliers, diet, exercise, etc. I was set up with a prescription for the same bags I had used in the hospital, and I wasn’t aware of the many other options that were out there.

My stoma is flush with my skin and standard bags kept leaking. I found out about convex stoma bags through an online support group. Then, I started researching the available options and contacted various ostomy product supply companies and asked them to send me samples. I must have tried about 10 different convex bags, all claiming to do amazing things, but the only one that worked well for me was the Dansac NovaLife TRE^™ soft convex pouch. It was such a relief to find the right bag!

 Getting back to an active, healthy lifestyle

The physiotherapist in the hospital had recommended that I try Pilates to help strengthen my core. I found out about Sarah Russell, a Clinical Exercise Specialist who has a stoma and is the author of “The Bowel Cancer Recovery Toolkit”. Her book provides a programme to gradually introduce exercise post-surgery. I started doing one-to-one online Pilates sessions and then classes, which I have kept up. I also went to a personal trainer for a few months to help build up my fitness. This has given me the confidence to do any physical activity, and I know what I can do safely and what my limits are.

Managing a new stoma with cancer treatment is challenging, since it takes at least three months for your stoma to settle. I ended up having chemotherapy, which upset my stomach and bowel. I had a lot of nausea which impacted what I could eat. I kept a food diary and made sure to try a food several times before ruling it out. There is a lot of information available for ostomates about avoiding food-related issues, but everyone is different. I learned through trial and error that there are a few foods that I should avoid, like beans, lentils, mushrooms, and cauliflower. Other than that, I can still eat most things that I used to before I had a stoma.

Finding support and connection, and becoming an advocate

Peer support is really important when you are new to having a stoma. A “stoma buddy” before and after surgery or a local ostomy support group would have been great, but neither existed in my area. However, I found the Colostomy UK online support group to be invaluable in the early days and I now volunteer for them.

Mental health and social support are also crucial. I sought emotional support from a local cancer charity and spoke with a counsellor there. I also worried about going back to work after my treatment and having to change my bag at the office. I worked with my employer to make the accessible toilet stoma-friendly. A few simple adjustments like adding a shelf and hooks made a big difference and meant I could change my bag easily.

I have always been very open with family, friends, and colleagues about having a stoma and found that this has helped me adjust to having a stoma. And being able to raise awareness and support other people with ostomies is very rewarding. I try to get the message out that having a stoma doesn’t hold you back – you can still do pretty much anything you want to do!

People who provided testimonials received compensation from Hollister Incorporated. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person.