Give us colon cancer survivors a (toilet) break

One of the challenges facing a colon cancer survivor is the issue of going out. Yes, we need to go out to start recovering and getting back to normal – we can’t lurk at home forever – but going out isn’t always easy.

When your colon is recovering – and sometimes permanently – you can suffer from what’s called urge incontinence. In other words, you might need to use the toilet right away, you can’t wait and what comes out may be little more than liquid.

This is very challenging for everyone and causes a lot of fear and stress. Some people avoid going out as a result. For women, in particular, it’s a big problem because of the long queues in women’s toilets.

If you’re a colon cancer survivor, the idea of a toilet queue and people not understanding that you need to jump it – not because you’re selfish but because you have a disability – can be extremely daunting.

My hospital gave me a card that said I have a medical condition that means I need to use the toilet immediately. Apparently you can flash this in shops, offices and other places and they’re supposed to let you use their toilets. The card disappeared into my box of notes and was never seen again. It was useless, because you’d still need to explain – so why use the card?

Then there’s the disabled toilets. Half of them you now can’t get into because they require a radar key, and if you’re only going to be intermittently incontinent for a short period of time then you’re not going to invest in one.

Even when you can get into the toilet, you have to run the gauntlet of people who judge you for using a disabled toilet – I kid you not.

I got sheer hatred stares from wheelchair users and elderly people who clearly didn’t believe I needed to use the disabled toilets. This was at a point when getting up and down was really, really hard after my open procedure, so I needed the facilities provided by the disabled toilets. I was judged and judged harshly, and I didn’t appreciate their mutters, comments or complaints.

Another time I had to get an injection while I was out and the only private place I could find was the disabled toilet. When my son and I eventually emerged (he was administering my injections) we were greeted by a group of people that were muttering about us being drug addicts and giving us hostile hate stares again. For the record, the injection was into my stomach so I needed to partially undress to receive it, so no I couldn’t just do this out in the open. It was also a timed injection and because we’d been delayed I had no choice but to find somewhere where I could have it. Beyond privacy, though, there’s also the little matter of hygiene – washing hands and cleaning the injection site. (You need a sink.)

After being accused of being a drug addict, and following a particularly difficult conversation where a cleaner told me disabled toilets were not meant for people like me, I started to toughen up. The next time I was greeted by hate stares for using the disabled loos I said: ‘ look I have cancer and I have trouble getting up and down at the moment – I need a disabled toilet’. Some of the disabled people and their carers still sneered at me (though a little less confidently), but an old lady piped up: ‘good luck, darling and bless you’. It was a breakthrough. I realised I didn’t have to apologise or feel guilty for needing extra facilities or for being ill. Just because my disability was ‘invisible’ it was no less valid than a wheelchair user’s. Fortunately, my problems were only temporary and after a few months everything got back to normal, but while I had these challenges my needs were very real and just as important as anyone else’s.

I’m sure we’ve all been guilty of judging people who appear able bodied but use disabled facilities. If you’re doing that then please stop judging, because not every disability is visible and disability is a far wider range of conditions than just wheelchair users.

And please, please if someone ever says: ‘Can I use your toilet/I need to push in front of you …because I’m incontinent’, then for the love of whatever is dear to you let them. Imagine the fear and stress of being out in public and not being able to control your bowels.

The good news is that the colon is a remarkable organ and will adjust over a period of time. I only have 50% left, but my colon now functions as it used to – apart from not liking bran or fizzy drinks (small sacrifice!) and being a bit noisy sometimes. In my case it took only a few weeks for the colon to adjust, but it can take longer depending on your age, general health and the specifics of your cancer and treatment. My colorectal nurse told me that bowel function will continue to improve for around two years post-op. But if you’re having trouble with your bowel function then don’t suffer in silence – talk to your nurse as there’s many things that can be done to help you.

I thought I was alone in this horrible experience but quickly realised it’s a fairly common occurrence. See here to read the experience of Suzanne: Access All Areas

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