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The discomfort of comfort breaks

As you can imagine in a company that deals with washrooms, we find ourselves discussing a lot of things that people don’t, generally, talk about. Think about it for a moment – sanitary waste, the toilet-sneeze effect, people not washing their hands when they go to the loo, and so on. 

We often get asked if we’ve become desensitised to the subject. The answer is no. If anything, it makes us more sensitive and acutely aware of problems that people face on a day-to-day basis. With ‘taboo’ subjects, it’s easy for sufferers to feel isolated. We don’t consider that to be fair or appropriate, so we’re going to tackle one of those subjects now: continence.

The dictionary definition of continence is “the ability to control movements of the bowel and bladder”. This usually conjures up images of the elderly or those with long-term medical complaints, but this isn’t always the case. There are so many different forms of incontinence, which means it’s a condition that doesn’t discriminate – anyone can get it. Stress incontinence, overflow incontinence, overactive bladder (urge incontinence), functional incontinence, mixed incontinence, bed-wetting … the list goes on.

And then there are the implications of dealing with urinary retention. It’s a massive issue. Ian Milsom of the Gothenburg Continence Research Center commented that if urinary incontinence were a country, it would be the third largest in the world.

We wanted to understand more about the experiences of people who have encountered continence problems in ways that people might not realise. So we had a chat with Michael, who is dealing with retention problems from a prostate condition, and Andrea, who suffered bowel problems when being treated for breast cancer.

Michael’s story

Michael was diagnosed with benign prostatic hyperplasia (BHP) in 2015. BHP is a non-cancerous increase in size of the prostate gland and it has major repercussions on bathroom habits. It affects about 210 million men around the world. For Michael, this started with more-than-usual trips to the bathroom.

“At first, I put it down to getting older. Everyone knows that when men get older, they’ll need to get up several times in the night and, even though the urge is there, it takes a while to get going.”

After a few trips to the doctor, it became clear that this was a prostate problem.

“The biggest scare, I think, was while I was on holiday. I’d had small amounts of blood in my urine before, but this was much more. It was, literally, like a stream of blood. My wife drove me to the local hospital and I was kept in for three days. The treatment was quite invasive: catheterisation and basically being ‘washed out’. It didn’t help that I’d lost so much blood that I was anaemic, too.”

The pattern has continued since 2015. Michael has had times where he’s been fine, but, when a bout comes on, it’s aggressive. 

“The last ‘attack’ started in autumn 2018. I’ve been in and out of hospital, repeating the process since then. The worst part of it is the blockages. When the prostate bleeds, the blood clots and that means that I just can’t go. The pain is intense and then it’s a rush back to the hospital to be cleared out again. This time, the solution has been that I wear a catheter outside the hospital – not just when I’m in there. I started off with a self-catheter, which was fiddly but at least I felt in control. I’m now waiting for an operation to get the whole thing dealt with finally, but, in the meantime, they’ve upgraded me to a bag, which I really don’t like. It’s given me Urinary Tract Infections (UTIs), which is, apparently, quite common, but it’s very uncomfortable. On top of the discomfort of knowing I have a bag, it’s pretty demoralising.”

 A little discretion goes a long way

We asked Michael how it’s affecting his life.

“Quite considerably. I have to plan everything. We’ve had to cancel holidays because we don’t know what’s going to happen. Trips anywhere away from the house have to be short because I need to know I’ll be able to get to a toilet with the right facilities when I need them.” 

When he’s travelling for a couple of hours, he has to carefully consider his pit-stop options. He now has to plan his routes based on washroom standards, privacy and the resources available at service stations along the way.

“When I was self-catheterising, I needed to know that there’d be a cubicle in a washroom so that I could be discreet and out of sight and also have somewhere to dispose of the equipment. Now I have the bag, it’s even worse because I need a place where I can empty the bag when it’s full. Trouser legs get very tight and constricting when bags are overfull! Urinals are a total no-go area, because the ‘tap’ [to release the urine] is down past my knee. Put simply, I need a clean cubicle with a disposal bin at the very least. If there were a sink and soap in there, too, I’d feel so much cleaner.”

Andrea’s story

Andrea was diagnosed with breast cancer in her forties and has since made a full recovery. At the time, she underwent a radical mastectomy and a series of invasive rounds of chemotherapy. 

Nausea, vomiting, constipation and diarrhoea are all common side effects of chemo treatment. Some people also experience urine and bladder changes and kidney problems, but, luckily, Andrea avoided the last one.

“I think I’ve blocked out a massive chunk of time and emotions from that part of my life. Staying positive, although hard, was a key factor in getting through it. I needed to go out, to be doing something, keeping busy, and have some semblance of a normal life. I suppose, at first, I didn’t consider the implications. I was just adamant that I was going to go somewhere other than the hospital and my home. I learnt very quickly that it wasn’t going to be that easy.”

 An invisible disability

The chemotherapy made her very tired and she felt sick a lot of the time, which played havoc with her stomach. Control over bowel function became a problem.

“When I needed to go, I needed to go – with no waiting! We got to the point where my husband built a downstairs toilet in just a few days – just so that, when I got home from wherever I’d been, I’d be able to open the door and dash straight in.”

Trips out were short and sweet. Andrea recalls the indignity of even brief visits to the local shopping centre. 

“I needed to think about where I could go that would have large, roomy washrooms. Not that I needed a lot of space, but so that there were a lot of cubicles and I could easily head somewhere that was quieter and more discreet. Disabled toilets were a preference as they were better equipped for what I needed, but they weren’t always an option. They’re so often combined with baby-changing facilities, so there’s often a queue. When someone with a visible disability is waiting, someone whose disability is a lot less obvious – like me – will be treated with a level of contempt. Not all health problems are so obvious to spot.”

Appealing to the public

So, what would have made Andrea’s brief moments of freedom easier to enjoy?

“Probably the biggest thing that springs to mind is cleaning facilities in cubicles – for users, but also for surroundings. Stomach complaints at the best of times can be quite embarrassing and I’m someone who is quite open about these things. It’s horrible to use a public toilet that’s dirty and I would never want to leave a washroom in a state worse than I’d found it. Seat cleaners, toilet brushes, waste bins and that kind of thing often can’t be found in cubicles. And I don’t want to have to wait until I’m out of there until I can wash.

People shouldn’t have to carry baby wipes with them everywhere they go. Thinking about it, sealed cubicles and working air fresheners would also have been a plus.

The fact of the matter is that people who suffer from bowel urges – whether it’s from chemo treatment or any other complaint – find it embarrassing enough without having to worry about what the person using the facilities after them is thinking.”

Raising standards for all

As you can see from both of these people’s challenges, access to the right washroom facilities isn’t just about cleanliness and comfort. It’s also about discretion and control. Incontinence can affect young or old on a temporary or permanent basis and the stigma makes many suffer in silence. Someone you know or love may have or may become incontinent at some point, so let’s talk and make life more bearable for them.

We’d ask those who are responsible for toilets in a public place to consider the needs of their more vulnerable users. Plan your washrooms with care and empathy because you have the ability to give many, many people the dignity they deserve. 

Thank you to both Michael and Andrea for taking the time to share their experiences with us. We wish them both health and happiness for the future. 

Bladder and bowel control problems: Common but invisible disabilities

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