#PassItOn: The right stoma care for you can make all the difference

Phil woke up after emergency surgery to be told he had a stoma. His #PassItOn message for Bowel Cancer Awareness Month 2025 is that living with a stoma gets easier, and even comes with one handy advantage. 

The day I was to become an ostomate (a person who has a stoma) in September 2021, I woke up feeling a bit uncomfortable around my middle. Nothing too worrying really, just a niggle. But I found I couldn't go to the toilet as normal. I tried again a little later. This time I felt really unwell and collapsed on the bed. 

I was taken to hospital by ambulance. At first, they thought it was a bad case of irritable bowel syndrome (a disorder of the digestive system). But my bowel was having none of that and decided to let the large tumour it was holding erupt and announce itself by making a horrible mess. I collapsed and was brought out of an induced coma several days later. 

Becoming an ostomate 

The brilliant surgeon who had operated on me carefully explained that I had bowel cancer and introduced me to my new lifelong companion: my stoma. 

I’d never even heard the term ‘stoma’ before, so I didn’t have a clue what it was. Actually, seeing what it looked like stuck on my tummy to the left of my belly button, I surprised myself by being very matter-of-fact about it. I couldn't help but think, “Good grief, you’re an ugly thing, but you’re my lifesaver!” And we became the best of mates. 

I stayed in hospital for a month as I had a few complications. I was visited every day by the stoma nurses, who taught me how to look after my new stoma. I did have a few mishaps with leaks, which I found embarrassing, but I quickly became adept at making secure bag changes. My innate fear of the bag becoming detached is now a distant concern. 

My stoma’s name 

Naming my stoma was easy: Sooty. He’d been my childhood hero from the day Dad got our first television in the early 50s and after watching my first episode he pulled a Sooty puppet from behind the set and waved a magic wand around. He's been with me for life! It seemed only right that my stoma, my new hero, was given the same name.  

One day in a nice restaurant with quiet music playing in the background, Sooty started vocalising rather fruitily. Stomas can make noise and its completely out of your control. My usual trick of turning to the table behind us and tutting didn't work, because my wife, Chrissy, burst out laughing and declared, “That sounded just like Sweep!" We decided she was right; a name change was needed. After all, Sooty never makes a sound, but his pal Sweep can let himself be known and usually at the quietest times! 

It's me and Sweep forever 

In October 2024, I had surgery to have my stoma reversed. The surgeon was able to fix my parastomal hernia (a lump or bulge that can develop after stoma surgery) but was unable to perform the reversal because they discovered I had peritoneal cancer (cancer of the lining of the abdominal cavity) during the surgery. I was told my stoma would be permanent. It has its advantages though. I enjoy exploring remote parts of the northeast of England and I don’t have to worry about finding a public toilet. 

What’s worked for me 

There were initial sad, scary moments when I was told about my bowel cancer and stoma. All in all, it’s been a bit of a journey. The grand stoma naming ceremony together with asking for help from other ostomates on the Bowel Cancer UK forum, getting support from my stoma nurses and finding my confidence from using stoma products that work for me, has given me my 'Right, let’s get on with it!' attitude. 

Phil’s #PassItOn stoma care tips 

• Finding what works for you: You don’t have to stick with the stoma bags and skin products you’re given at first. I had some issues with bags sitting right on my body shape, so I got some samples from a stoma care company. I’ve found bags with a baseplate designed to fit around curves are good if you have a parastomal hernia. 

• Skin care with a stoma: Again, there a lot of different products out there so ask and shop around. I was getting sore skin from removing the bag because the adhesive was so sticky. I was recommended skin conditioner wipes and a spray that aids adhesion and helps protect the skin. I rarely have any skin issues now. 

• Avoiding leakages with a stoma: Deodorised lubricant might not help much with ‘stoma aroma’, but it helps move the bag contents to the bottom and stops ‘pancaking’. This is where the contents of the bag don’t drop to the bottom and push under the bag seal. As well as getting the right bag for my body shape, I use two semicircular tapes over the edge of my bags, giving a wider adhesive surface. Always double check your stoma is secure before you go out too.  

• Adapting your stoma care: Changes to your weight and body shape can affect how your stoma bag fits you. You may need to change your stoma products as you go through life. 

• Getting personalised help with your stoma: Your stoma nurse or stoma care companies can help troubleshoot any issues you have. Reach out to them. 

• Learn more about stomas, including the different types 
• Find out how you can get involved with our #PassItOn campaign this April