Dad with bowel cancer who said he would rather ‘die’ than have stoma bag now spreading awareness after having one fitted

A father who thought he would rather die than have a colostomy bag fitted after battling bowel cancer for three years was shocked to discover it would not stop him playing sports or working out and has since embraced his new normal.

Tom Hay, 38, an offshore worker from Hartlepool, was fitted with a colostomy bag after undergoing major surgery in February 2024 and feared his quality of life would be ruined.

The father-of-one had been battling cancer since scans revealed a growth in one of his lymph nodes in 2021 and had always refused to have a colostomy bag fitted until earlier this year.

On March 1, his wife Carly, 36, received a phone call in the middle of the night from 111 to say Tom needed to attend A&E immediately after a private blood test revealed he was suffering from sepsis.

Tom, who lost 65lb (30kg) between January and March 2024, going from 240lb (110kg) to 175lb (80kg), finally agreed to have a permanent colostomy bag – a pouch used to collect faeces – fitted as part of his surgery, and has been surprised by the results.

“I wasn’t sleeping, thinking I’ve got a four-year-old son and I’ve just been given 18 months to live,” he told PA Real Life.

“I was determined on not getting a colostomy bag and was like ‘I will die before I get one’ because mentally I couldn’t handle it.

“But before I went into hospital, I didn’t know you could wear a bag and continue living a good and normal life, because it’s not spoken about.

“It’s just because I didn’t have the knowledge or understanding.

“That’s why I want to spread colostomy awareness.”

In January 2021, Tom was working on an offshore wind farm, when he started “burping and passing wind” frequently.

He visited the GP a few weeks later and a stool sample revealed he was suffering from a bacterial infection for which he was prescribed several courses of antibiotics.

Having suffered from piles in the past, Tom was not too concerned, but Carly was not convinced and booked another doctor’s appointment when her husband returned home a few weeks later.

Tom had a faecal immunochemical test (FIT), which came back positive, suggesting there was a risk of bowel cancer, and he was referred for a colonoscopy at Tees Valley Hospital.

He attended the appointment on his son’s second birthday, November 29 2021.

“I just remember getting a call from him around three o’clock and he was absolutely fine, really calm,” said Carly.

“But when I asked what’s wrong he said ‘They won’t tell me anything because I’ve been under sedation.’

“The minute I walked into the hospital, I started crying because I knew.

“The doctor came in and said he noticed something in his rectum and my first question was ‘Is it a malignancy?’ (a tumour) and he said ‘I’m positive it is’.”

Over the next few weeks, Tom underwent a series of scans and tests which confirmed the cancer was stage one.

He was given the choice between having minimally-invasive surgery or a more serious operation to remove the cancer.

The latter was a riskier procedure to remove Tom’s lymph nodes which would have taken him six months to recover from and left him with a colostomy bag, so he chose the quicker option.

Tom went for a PET scan a few months later, in September 2022, hoping to be given the all-clear.

Unfortunately, one of the lymph nodes in his pelvic region lit up on the scan, and, while doctors could not say it was cancer for sure, they treated it as such.

In December, Tom began 25 sessions of chemotherapy and radiotherapy which left him in “excruciating pain” over the following months.

“On Good Friday, Carly came home to find me lying in the foetal position, crying,” he said.

“It literally felt like someone was boiling a kettle in my insides. It was excruciating.”

After hitting rock bottom, Tom said he went into “fight or flight mode”, pushing himself to follow a healthy diet and work out.

However, in July 2023 he nearly collapsed while at the gym and his energy levels plummeted.

He returned to hospital for more tests and was relieved when his CT scan and biopsy came back negative.

But once again, their hopes were soon dashed.

“The oncologist signed us off, but then the MRI scan came back and it was a case of ‘It’s not fine’, so we went back,” said Carly.

“This is when having a colostomy bag fitted started circulating again as a choice,” added Tom.

Tom was again faced with a tough choice: to have “life-changing surgery” or hope that what the MRI scan had uncovered was not cancer.

They decided to visit the Royal Victoria Hospital in Newcastle for a second opinion.

“We were expecting, because there was no proof of cancer, except one scan that showed there might be something, that we were going to get some good news,” said Tom.

But it was the opposite, and Tom was advised to have pelvic exenteration surgery.

“They said, what that means is we need to take away Tom’s rectum, prostate, bladder, seminal vesicles, and we need to give him two bags, one for urine and the other for faeces,” said Carly.

Tom added: “It was massive surgery and I just sat there gobsmacked, and said ‘But there’s no certainty of cancer?’ and they were like ‘Yeah, but this will give you 100% cure’.”

If Tom refused to have the surgery, he was given around 18 months to live.

“I got back in the car and Carly’s crying her eyes out,” Tom said.

“I couldn’t process it because nobody could actually prove that it was cancer at the time.

“I was like, what if they remove everything and it all comes back clear?

“So I go through all that pain and suffering and sacrifice for nothing.”

Tom was determined not to have a colostomy bag, saying he would rather die, and could not deal with it mentally.

“I was in a dark place and couldn’t pull myself out,” he added.

He was told surgeons could perform an anterior resection surgery first, which had an 85% chance of successfully removing the cancer, and possibly without Tom needing a bag.

After spending a “tense” Christmas with his family, Tom agreed to have the anterior operation on February 2 2024.

“I woke up and the surgeon was waiting to show me that he had managed to do the operation with no bag,” said Tom.

“He was like ‘That’s the best surgery I have ever done’.”

A week later, Tom was sent home and told to drink fluids and eat soft food.

Over the coming days, he followed their instructions and started going on short walks, but he could feel the pain getting worse.

After doing some research, Tom figured he had prostatitis, and said it felt as though he had a “flaming golf ball” stuck inside him.

“I went from having like a couple of poos a day to like more than 20,” he said.

“My stomach was killing me.”

Both Tom and Carly have regular private blood tests to monitor their fitness through the company Medichecks.

By chance, they had each done a blood test three days earlier and sent the samples off to the lab.

A few days later, in the middle of the night, Carly received a phone call from 111 to say Tom needed to go to A&E immediately.

It turned out Tom’s Medichecks private blood test had flagged a serious infection and the laboratory had called the hospital after not getting through to Tom.

Tom found himself back on the operating table and this time agreed to have a permanent colostomy bag fitted.

He now lives with a colostomy and said that, while he still has “down days”, at other times “he doesn’t even feel it” and is now keen to move forward.

He said the ordeal has completely changed his outlook on certain aspects of life and he hopes to raise awareness about cancer and living with a stoma bag.

While recovering in hospital, he watched videos on social media about other people in a similar situation, and was shocked to discover that having a colostomy did not stop them from playing sports and working out.

“I do still have down days and I am still struggling with a lot of pain and my mentality, but I am still trying to make positive progress every day,” he said.

– For more information about Medichecks blood tests visit: www.medichecks.com.