Toby is sharing his journey with Crohn’s disease and proving feeding tubes are nothing to hide
Toby with a feeding tube(Image: Guts UK)
As part of Feeding Tube Awareness Week, a man from Withernsea is speaking out to challenge the stigma surrounding enteral nutrition. Toby Kaye, 40, is working alongside the national charity Guts UK to share how Crohn’s disease made feeding tubes a vital part of his medical journey.
Toby’s experience began in 2010 when he was diagnosed with Crohn’s disease, an inflammatory bowel condition affecting one in every 650 people in the UK. After a near-fatal bout of sepsis in his twenties, he underwent several major surgeries, including a colostomy and eventually a permanent ileostomy. It was during these periods of severe illness that the necessity of a feeding tube first arose.
Toby admitted the emotional hurdle was something he had to face. “I hated the idea of needing a feeding tube at first,” he recalled. “I was worried about what people would think and thought they’d stare at me. I soon realised that nobody would even notice most of the time and went on about their own day.”
Following multiple surgeries in 2012, Toby faced drastic weight loss and an inability to keep food down, leading doctors to recommend a nasogastric (NG) tube. “After my colostomy surgery in 2012, I refused to have the procedure at first. The thought of a tube down my throat was terrifying. As my health declined further, I accepted that I needed to have one,” he explained.
The support provided by the NG tube proved transformative, allowing him to be able to recover at home. Initially connected to a feed for 12 hours of the day, Toby said: “Luckily, I had a backpack for my feeding pump, so I could leave the house while I was connected, but over time, I just hooked up to it when I was going to sleep at night.”
Although Toby is not currently using a tube, his history with the device – most recently three years ago when his bowel shut down due to medication side effects – has given him a pragmatic outlook on the future. He credits the intervention with allowing him to reach a healthy weight for surgery.
He said: “I’m not using a feeding tube right now, but I know there’s always a chance I might need one again in the future. Looking back, I’m really glad I accepted that I needed tube feeding. It helped me put weight back on, regain my strength, and reach a healthy weight, so doctors could safely operate when it was needed. While it’s a great feeling not being tube fed now as it gives me freedom from tubes and machines, I’m far less upset if I’m told I need one again for a short time.”
By sharing his story, Toby and Guts UK hope to dispel common misconceptions and offer encouragement to others facing similar diagnoses. “My advice to anyone facing tube feeding would be to trust the doctors, nurses, and dietitians. If they’re recommending it, it’s to support your body when it needs it most. It might feel uncomfortable at first, but you do get used to it,” Toby added.
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