‘It Was Easier Just To Stay Home’: Living With Faecal Incontinence
By Sarah Graham
“I was in college when the symptoms first started and I didn’t tell anyone. I skipped quite a lot of lessons and there would be days when I wouldn’t go into college at all because I couldn’t face the questions about having to constantly go to the toilet. Sometimes I’d try and hold it in but that would just result in me being in agony, so it was easier just to stay at home. I just wanted to hide and be near a toilet.
None of my friends knew what was going on. I don’t know if I’d have felt more comfortable telling people about it if I had an illness where I needed to wee all the time, but because of the nature of it — because it was stools — I just felt really embarrassed and isolated. I didn’t know what it was and I was very insecure about it so my logic was to just keep quiet, not say anything and not do anything about it.
I was coming home on the bus one day and I got this pain that I can only describe as like hot knives in my stomach. I was buckled over in pain, then the next thing I knew I’d soiled myself, and it was liquid. That was the first time it had happened in public and it was so embarrassing. I called my mum, crying and begging her to pick me up from the bus stop, and she marched me down to the GP.
I was referred for colonoscopies and eventually diagnosed with ulcerative colitis, which actually felt better in a way because at least I knew what was happening. It’s a chronic autoimmune disease though, so realising I’ve got this forever has taken a lot of coming to terms with.
I go through periods of remission and periods where it flares up, which might last for weeks or months. It’s difficult to predict but after 10 years, dealing with it is second nature now. It’s usually when I get stressed that the feeling of incontinence will come on and I have to make a beeline for the toilet.
At its worst, when I’m flaring up to the point where I can’t go to work, I’ll literally just sit by the loo all day — that absolutely becomes my world. I’ll bring an iPad and my two-litre water bottle and just sit on the bathroom floor because it’s too exhausting to haul myself to and from bed whenever I need the toilet.
I always have an emergency kit in my bag or the car, and wherever I go I’ll figure out where the nearest toilets are, just in case. I’ve also got a radar key, which lets you unlock disabled toilets, and a disabled badge, which is invaluable when I really need to get to the toilet and don’t have time to hunt for a parking space.
Disabled toilets can be hard. I remember being in Asda during my most recent flare, which lasted a year. I hadn’t eaten anything as a precaution, and I felt like I’d just passed wind, but I could feel it trickling and pegged it to the disabled toilets to clean myself up. It’s always stressful because obviously people can’t see that my insides are all ulcerated and inflamed, so I do quite often get (mostly elderly) people tutting when I come out.
It’s even worse when there isn’t a disabled toilet though, because there’s no privacy in public toilets. I’m so conscious of the noise, or making a mess, and people thinking I’m dirty. Toilet fresheners like VIPoo and Poo-Pourri are a huge anxiety reliever in terms of masking the smell.
The biggest thing is that you can’t really afford spontaneity anymore — you can’t afford not to plan your day. That’s what I miss most. It was especially difficult when I was 18/19 and when I was at uni. So often my nights out would be cut short and I’d have to get a taxi home by myself while all my friends stayed out.
Relationships were so difficult too. I’ve spent so many nights just crying, thinking I’m never going to find anyone, because I’ve told lads about it and they just disappeared. I’ve now been with my fiancé for six years, who is the most caring, understanding person — but it wasn’t always like that before him.
I’m much more open about it these days because I can’t live my whole life hiding away. All my friends and family know, and I’d always tell a new employer straightaway. It does still have a huge impact on my mental health, especially on bad days when I’ll just feel like, What’s the point of it all? I’ve found a fantastic, supportive IBD community online though, which I wish I’d had when I was 18.
For anyone who’s suffering in silence with bowel incontinence, please know that you’re not alone and you don’t have to go through it by yourself. You can still do all the things you wish to do, and be who you want to be, just with a few adaptations along the way. Empower yourself with knowledge and preparation to take back control, and forget anyone who doesn’t support you — you’re better off without them.”
For support with faecal incontinence, contact the following organisations: Guts UK, Bladder & Bowel Community, Bladder & Bowel UK.
For support with postnatal faecal incontinence, contact MASIC.
Originally published at https://www.refinery29.com
