Couple call for greater understanding of living with bowel disease

Andrew and Caroline Snowden
Andrew and Caroline Snowden
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It was not long after her wedding that Caroline Snowden first began to notice a deterioration in her health.

Worsening abdominal pain and repeated episodes of diarrhoea left her feeling increasingly sick – and scared.

“It was really worrying – I was ending up in a lot of pain and I had to have some very intrusive tests,” Caroline recalls.

The diagnosis came quickly, but its impact was still devastating for a young woman who should have been embarking on one of the happiest times of her life.

“Initially, we just thought it was down to the stress of marrying me,” laughs her husband, Hoghton with Wheelton county councillor, Andrew Snowden.

But laughter was one of the many simple pleasures which would be in short supply for the newlyweds during their first year of marriage, as the then 31-year-old Caroline became consumed by two conditions which would eventually end up threatening her life.

When she was told that she had the inflammatory bowel complaints Crohn’s disease and ulcerative colitis, life suddenly began to revolve around whether toilet facilities could always be found close at hand.

The couple soon began to realise that there was no shortage of toilets, but many of them were locked out of reach behind the doors of private businesses which failed to recognise the plight of a bowel disease sufferer making a plea for help.

“I once ran into a store on a retail park which didn’t have public toilets – and they wouldn’t let me use the staff facilities even though I was desperate,” Caroline remembers.

“There were many times when I was driving to work and I was having to think about where I could stop to use the toilet.”

It was bad experiences like those which left Caroline increasingly afraid to stray too far from her own front door.

“You can’t go for days out or on holiday – I couldn’t even take the dog for a walk, I’d just throw the ball for her in the garden.

“We love walking, but I just couldn’t leave the house. I couldn’t even really meet up with friends,” Caroline says.

Having witnessed his wife’s suffering and upset, Andrew decided to use his role as a county councillor to try to make a difference to others in the same position across Lancashire.

He drafted a proposal calling on County Hall and the region’s district authorities to “lead by example” and encourage Lancashire businesses to recognise the “Can’t Wait” card, which can be presented to staff by members of the public needing urgent access to toilet facilities.

But he also wants better access to information about toilet locations and their availability.

“We would have gone out more when Caroline was ill if we’d been able to go on an app and find all the toilets on a particular route which accepted the Can’t Wait card,” Andrew explains.

“We need to find a digital platform to provide that information. We can’t create a system which is going to be really expensive to maintain, but if we could encourage people to upload details as they find them, that would make people’s lives a lot easier.”

As he presented his proposal – which was unanimously supported at a meeting of the full council this week – Andrew had to hold back tears as he recalled the low which Caroline reached.

Shortly before Christmas 2015, flu-like symptoms sent her to bed for three days – but turned out to be far more serious than a winter bug.

“I got a phone call late one Friday night from her consultant and he asked where she was. I told him how ill she had been and he just said that he’d seen her blood test results and she needed to be brought in straight away.

“The ulceration had spread that far and she was so physically weakened by the condition that they couldn’t operate on her – this was a 31-year-old woman.”

Caroline did eventually undergo what the couple describe as nine hours of “life changing surgery” – and now they want to promote the message that not all disabilities are visible.

“You’re as ill as somebody going through cancer treatment, in terms of the effects on your health – but you pretend everything is alright,” Andrew reflects.

“There’s two types of misunderstanding about the conditions – people not realising the severity of them or just generally being ignorant.

“Both of our employers were really understanding, but we know other people who have gone through countless jobs – they just couldn’t hold one down because they were in and out of hospital all the time.”

Looking back, Caroline now recognises how badly her life had been affected.

“It was really difficult, but I don’t think I recognised that at the time, because I was so ill. I didn’t have much of a life, though.

“There’s just this constant fear of needing the toilet,” Caroline says.

The couple’s hope now is that Lancashire’s councils and businesses will do all they can to help lift the burden of worry off the backs of those who are carrying enough already.

CROSS-PARTY SUPPORT FOR CROHN’S AND COLITIS SUFFERERS

Andrew and Caroline have met many other bowel disease sufferers over the past four years and became particularly close to one woman – who they later discovered was a relative of one of Andrew’s political rivals at County Hall, Labour’s Kim Snape.

In a show of cross-party concern, it was County Cllr Snape who seconded the motion put forward by Andrew from the Conservative side of the chamber.

“We shouldn’t have situations in Lancashire where somebody can’t go out without having to think ahead to see if there’s a public toilet available.

“If people need to go to the toilet, they need to go there and then. Awareness and action are absolutely key – and employers and business are crucial to this” she said.

The debate also heard a suggestion from County Cllr Peter Steen that the availability of toilet facilities could be incorporated into Lancashire’s Safety In Town initiative, which gives people with learning disabilities a point of contact if they need help.

WHAT ARE CROHN’S DISEASE AND COLITIS?

Crohn’s disease cause inflammation of the gut, which can sometimes also affect the wall of the bowel.

Ulcerative colitis is another inflammatory condition, but it affects the lining of the colon and rectum.

The symptoms of both conditions are often personal to the individual sufferer, but can include abdominal pain and diarrhoea, a general unwell feeling and weight loss.

The charity Crohn’s and Colitis UK describes both as “ongoing, lifelong condition