A toilet. Loo. Lavatory. Commode. W.C. John. Potty. Latrine. Rest room. Wash room. Dunny. Whatever you want to call it, we all use them! But have you ever really thought in detail about a toilet? How you see a toilet and what going to the toilet means to you?
For most of us a toilet is purely a means to an end. A device you sit on to expel your bodily waste. It’s something you use because you have to use it. It’s part of everyday life and I am sure most of you don’t even think twice about it. It’s something you take for granted, and when you sit on it once or twice a day, you do your business and you are done. That’s it!
For some of you, sitting on the loo might even be an enjoyable experience. Reading the paper, playing games on your phone, getting a bit of peace and quiet, some relax time!
I used to view the loo like this too. Until I got Crohn’s disease.
Imagine needing to poo more than 20 times a day.
Imagine the worst case of diarrhoea you have ever experienced.
Imagine if when you had the urge to poo you were unable to hold it for more than 30 seconds. Having little or no control of your bowels.
Imagine looking down into the toilet bowl and seeing only blood and mucus because your bowels are so inflamed.
Imagine as a grown adult pooing your pants because you couldn’t reach a toilet in time. The shame. The embarrassment.
Imagine the anxiety that creates.
Imagine the fear of taking public transport, a car trip, going out for dinner, for a walk, to the movies, doing a presentation at work or even just leaving your house because you were so concerned about not being near a toilet in case you had an accident.
Imagine sitting on the toilet in so much pain you wanted to vomit or it felt like razor blades trying to pass anything through.
I know it’s hard to imagine, but that is how as someone with an inflammatory bowel disease (IBD), I came to view the loo.
Most people go to the toilet once or twice a day. A friend and I used to have this ongoing joke when we went on holidays together that we had to do our POD (Poo Of the Day) before leaving our hotel room each morning. Forget singular PODs! When I was in a bad flare, I lost count of the number of times I had to go to the toilet in a day.
I was constantly anxious, sometimes even in my own home. We only had one toilet, and as soon as I knew anyone else was on it, my gut would start working overtime, instantly worried I would need to go too. I have pooed in a bucket beside my bed because I couldn’t hold it. I’ve had accidents running from my lounge to my bathroom (even when nobody else was on the toilet). We ended up moving to a new house so we could have a second toilet.
In public I have used toilets in all states of cleanliness, many not even in working order, without doors, without seats. Toilets I would never have dreamt of using before IBD. It gives new meaning to when you’ve gotta go, you’ve gotta go.
There have been extended periods where I couldn’t even tell you when I had last done a healthy solid poo. I remember once cheering for joy when I did a ‘normal’ poo after months of only liquid and blood. For years I kept a “poo” diary recording every single one of those awful poos, what and when I had eaten, how urgent and how much blood there was. I even created a scale for these things.
The bathroom was not a tranquil place for me to go for chill out time or to play Solitaire on my phone. I spent many a night crippled over in pain and tears for hours on end sitting on the toilet, whilst my husband sat on the bathroom floor trying to make me feel better. It was not a happy place for me. It was both my saviour and my worst nightmare.
It’s not always like this for everyone, or all the time, but I am sure anyone with IBD would be able to tell you a toilet horror story or two.
It is true that IBD is not just a pooping disease. Yes, there are so many other symptoms, but for me by far the worst symptom is the anxiety around the urgent and frequent need for a toilet and the pain that being on the toilet so often involves. This will always stick out in my mind.
I had colectomy surgery 2 ½ years ago and am fortunate to currently be in remission from Crohn’s. Living with an ileostomy, poo and toilets enter the equation in a slightly different sense, but still play a big role in my life! As someone with IBD, I now view the loo very differently. I won’t ever forget seeing the toilet through the eyes of a bad IBD flare, nor will I ever take a toilet or healthy bowels for granted ever again.
I hope this has given you some understanding of what living with an IBD can be like, and perhaps you might now view the loo differently too.