Gogglebocs star aims to raise awareness of painful and incurable ‘invisible illness’

The smiles and quick wit of a reality TV star are hiding the trauma of an excruciatingly painful incurable disease that’s blighted her life.

Gwen Roberts, 45, is a popular regular on  Gogglebocs Cymru – the hit Welsh version of Gogglebox – but viewers are totally unaware that behind all the jokes and quips she’s been plagued with Ulcerative Colitis since childhood.

She appears alongside husband Dylan on the series  – where  ordinary people voice their opinions about a range of television programmes – that’s broadcast on S4C on Wednesdays at 9pm.

Raising awareness

The mum-of-two from Valley, on Anglesey, now wants to use her new-found fame as a platform to raise awareness about the little known condition.

Gwen is heartbroken that one of her two sons has also developed Ulcerative Colitis, which can be hereditary, and it has begun to take over his life, just as it did her own.

She’s  calling for government and health organisations to launch a publicity campaign explaining how its devastating symptoms impact on every part of sufferers’ lives.

Gwen was diagnosed with Ulcerative Colitis when she was just 13 after being struck with debilitating stomach pains and persistent diarrhoea. She lost two stones in 10 days.

At first doctors put it down to a tummy bug but her agonising symptoms continued for months becoming so severe that surgeons eventually removed her colon and she was fitted with an ileostomy bag.

The bag functions as an exterior ‘colon’ lying on the outside of the stomach and working to remove bodily waste routed from the small intestine.

The trauma of the illness and having such an invasive procedure so young turned Gwen’s life upside down.

She said: “As well as the physical pain, it affected my mental wellbeing. I felt embarrassed and ashamed about having to live my life with the bag. I didn’t want to go out anywhere, I lost all my self-esteem and confidence, and I felt completely isolated.

“I lost friends, who I did not see anymore. I had so much time off through illness that I struggled to keep up with schoolwork and rumours went round my school that I had cancer. Other pupils and even teachers just did not understand what was wrong with me. It was 1992 and no one had heard of Ulcerative Colitis.”

“Invisible illness”

Even today, 32 years after she was first diagnosed, she said the illness is rarely talked of and little understood.

Experts are still not entirely clear what causes it but they believe it is a defect of the immune system which prompts a person’s bodily cells to attack their own digestive system.

Gwen calls it an “invisible illness” as people cannot see the symptoms and do not know what a sufferer is going through as they struggle to lead normal lives.

She said: “GPs often fail to recognise early symptoms and pass it off as something else, such as a stomach bug or Irritable Bowel Syndrome, meaning sufferers can go for weeks or even months before being correctly diagnosed.

“The effect on their lives in the meantime can be tumultuous. To put it bluntly you can never be too far from a toilet. It is not a question of just wanting to go, it is a matter of absolute urgency. The body just turns on itself to the point that you are no longer in control.”

If unaddressed, the weight loss can be transformative, causing weakness, fatigue and muscle wastage, often resulting in time off school or work, and even job loss as a result of a lack of understanding by employers.

Stigma

Gwen said her son, Gethin, 26, lost his job when the illness first manifested in him.

She said: “He went to his GP and was told he had piles, which I knew from my own experience was completely wrong.

In the end I insisted I go back with him and demand a referral for tests. I recognised the symptoms immediately and knew exactly what he was going through but many people are out there on their own, struggling to get by day to day without an accurate diagnosis. It can be frightening and terribly isolating, as no one really wants to talk about toilet issues. It’s not something you want to chat about over coffee and cake.”

Gwen urged anyone experiencing similar symptoms including relentless stomach pains, diarrhoea or passing blood to get checked out immediately and insist on being tested for Ulcerative Colitis.

She said: “The effect of the disease scars the bowel which increases the risk of developing cancer. The longer it is untreated the more scarring there will be.”

Treatment includes medication to reduce inflammation in the bowel, though in severe cases surgery may be needed.

She met her husband Dylan, 47, who works at RAF Valley maintaining airfield safety equipment when she was 16 and he was aged 18.

Gwen said: “I told him straight away what was wrong with me and what I was going through. It is not something that ever goes completely away, so I wanted him to know exactly what he was in for if he chose to stay with me. But he was wonderful, so kind and supportive, he said he would look after me no matter what and he’s stayed true to his word. I am so lucky to have found him.”

“Life changing”

As well as Gethin, the couple have another son, Tomos, aged 25.

Gwen, who works as a pre-op nurse at Ysbyty Gwynedd, said she advises anyone facing an ileostomy procedure to focus on the benefits rather than the negatives.

She said: “It is a traumatic and life-changing operation to have to go through, but if it is going to make your life better and enable you to do things that you couldn’t do previously then it is worth it. I feel liberated since I had the bag fitted. I no longer have to be five steps from the bathroom all the time,

“Before this I would probably never have considered something like Gogglebocs but here I am on TV with my lovely husband. I said when I had the op that I was going to ensure the outcome was positive, to give myself some control back over my life I’m determined to live up to that promise I made to myself.”

Gwen said she and Dylan are loving every minute of being part of the Gogglebocs team which they joined as newcomers for the current 2024 series.

She said: “Everyone is so supportive and it’s given us lots of laughs which has to be  a good thing!”

The show is made by two Gwynedd production companies, Caernarfon-based Cwmni Da and Criccieth-based Chwarel, and has become one of the most popular Welsh language shows, building up a large fanbase. It is narrated by comedian and broadcaster Tudur Owen and is subtitled so it can also be enjoyed by English language viewers.

Courage

Producer Huw Maredudd, from Cwmni Da, said they were delighted to welcome Gwen and Dylan on board, and overjoyed that the show was so well received with lots of traction and attention on social media.

He said: “As well as being popular member of the Gogglebocs family, Gwen is a hugely courageous and inspirational woman and we applaud her campaign to raise awareness about this incredibly difficult and debilitating condition.”

The last programme in the current series of Gogglebocs Cymru goes out on S4C at 9pm on Wednesday, April 3.

English subtitles will be available and the programme can also be viewed on S4C Clic, BBC iPlayer and other streaming platforms.