Living with a stoma: Neil and Lindsay share their experiences after bowel cancer diagnoses

People affected by cancer often face many challenges as part of their diagnosis and treatment. For those living with bowel cancer this may include a stoma, which comes with its own set of challenges.

A stoma is an opening on a person’s stomach where the end of the bowel is brought to the surface to create a colostomy (if it’s the lower bowel) or ileostomy (if it’s the upper bowel), allowing waste matter to empty into a special bag that sits on the tummy.

Having an operation to create a colostomy or ileostomy can be used as a treatment for conditions like Crohn’s disease, but also a variety of cancers, including vaginal and cervical cancers that have spread, and more commonly, bowel cancer.

For many a stoma is a temporary solution while the bowel recovers from surgery; for others it is permanent.

Medical advances mean today’s stomas are a far cry from the rudimentary equipment first used in the 19th century. The equipment is discreet, and people living with them can do most of the activities they enjoyed before they had one.

Many of the problems they may cause can be dealt with through time, patience and experimentation. Anyone needing a stoma will have a specialist stoma nurse who can help them adapt to living with one.

Lindsay Lambert, from South Yorkshire, and Neil Hubbard, from Warwickshire, had sudden and dramatic bowel cancer diagnoses, with the stoma an unwelcome addition to their burden.

Both Lindsay and Neil have both not only come to terms with, but have actually embraced their stomas. Now they’ve shared their stories with us to raise awareness of what living with a stoma is like.

Neil’s story 

When Neil, 56, was crippled with stomach pains one lunchtime, his colleagues in the tax office teased him that it was the free burger he’d claimed from a local eatery. But that night the pain was so agonising he went to hospital.

After he started vomiting up faecal matter from his colon, doctors rushed him off for a scan under sedation. He woke up with a stoma.

“I thought I was just having a scan for a twisted bowel, so waking up with a colostomy bag was a shock. They’d had to open me up and empty me out because I was completely blocked up. It was bowel cancer,” said Neil.

Neil went into remission after further surgery and intensive chemotherapy, and he later had an operation to reverse his stoma.

Neil with his fiancé Tracey and their dog Fizz.

“My first stoma was troublesome. It kept leaking and I was constantly worried people could see or smell it. I’m a keen cyclist and musician but it stopped my social life in its tracks, so I was glad to have it reversed,” he said.

When Neil’s cancer came back in 2017, he begged the surgeon to avoid a stoma if at all possible. But after a major operation and internal chemotherapy wash, Neil once again woke up with a stoma.

Thankfully, this stoma was better than the last and Neil became expert at managing it, finding particular success with stoma irrigation – a technique that gave him more control over when he emptied his bag.

He overcame his embarrassment to try dating again, and when he met Tracey, she didn’t bat an eyelid at his colostomy bag. They are now engaged to be married.

Once I learned to be open about my stoma I realised other people didn’t mind half as much as I thought. I thought my love life was over but here I am getting married. I cycle, I do long walks, I even have a special pair of high swimming trunks so I can swim. I don’t let the bag stop me.

“I’ve been in remission for five years now and I’m told my stoma could be reversed again. But I’m not sure. I’m comfortable with it now and reversing it would mean more surgery. To say I’m undecided shows just how much my feelings have changed.”

Lindsay’s story

Lindsay, a 60-year-old businesswoman in the beauty industry, had to adapt to living with a ‘new body’ after being diagnosed with stage 2 bowel cancer in May 2016.

Lindsay Richard Walker/ImageNorth.

She’d been referred to hospital after suffering unexpected stomach pain and blood in her poo while on holiday.  While waiting for test results, Lindsay’s husband Kev took her out to a shopping centre, where she suddenly needed the toilet.

“I rushed into a cubicle, but as I sat down, blood came out with such force it really shocked me.  I was shaking, it was so horrible.  We drove home in silence, knowing things were very serious.”

Two days later Lindsay was told she had stage 2 bowel cancer and needed major surgery to remove the 2cm tumour in her rectum. Lindsay had abdominoperineal resection surgery: the removal of her anus, rectum and part of the large bowel.

It also meant she would need a permanent colostomy and wear a stoma bag forever.

A photo from Lindsay’s fashion shoot.

She decided to face her new life and body full on, with her typically positive personality.

She said: “I looked in a full-length mirror just after my surgery.  I had no anus, rectum or lower bowel, so I just called it my ‘Barbie butt’!”

Lindsay, a self-proclaimed fashionista, asked if she could get designer stoma bags to stop them looking so medical, “but I didn’t want to conceal the fact that I now had to poo in a bag either.

I’m slim and have always dressed in an edgy style. I still wanted to wear jeans and look the way I always looked before cancer. I even did a fashion shoot, proudly showing my bag.  Now I’d love to help more people and perhaps offer advice on what clothes to wear, or start my own brand or online stoma shop.

“I still wear fashionable clothes and even a bikini on holiday, with my bag proudly on view. However, it can be a problem finding stylish outfits that work around wearing a stoma – I don’t want dowdy elasticated skirts or large smocks to cover my bag.

“It’s a very scary time for us ‘stomamates’, learning to adapt to dressing with body changes and leakage. I want to break down the fear of a stoma too, educate people about them, to be brave and not hide it away.  I want to show others going through this, and those close to them, that they can be brave too.

“Oh, and by the way, you can get designer stoma bags!”

Jane and Nicki

If you have questions about cancer go to www.cancerresearchuk.org/about-cancer for comprehensive, easy to understand information.

Or, if you have specific questions, you can call CRUK’s nurses on freephone 0808 800 4040 between 9am and 5pm Monday to Friday.

To chat online with other people affected by cancer join our fully moderated online community www.cancerchat.org.uk