What it's like for me living with a stoma - Lorraine Patrick
As World Ostomy day is almost upon us Lorraine Patrick shares what having a stoma means to her.
The most important thing for me has been that having an ostomy has allowed me to be a much healthier Mummy to my daughter and that’s exactly what I wanted. Having a stoma means I am not constantly running to the loo and am pain free so overall for me it has been a positive thing.
I think in general it enables you to lead a relatively normal life (within reason), I don’t suggest you try to win an iron man competition and give yourself a hernia but apart from a few little lifestyle tweaks, it really does mean life can get back to normal for most people.
There is a little extra thought required for most of us though. You need to allow an extra 5-10 minutes when getting dressed to change your bag. Also I like to know wherever I am going that I can find a toilet fairly easily if need be. If I haven’t eaten, my stoma tends to get a bit noisy so if I am going out to dinner I don’t spend the day saving myself for it. Actually, quite the opposite, I would eat a small snack about an hour before going out, even just a couple of digestives or a round of bread is enough. I do this so that I’m not competing to talk to my friends over dinner due to my ‘extra’ guest chattering!!!
There are also food limitations and all of us are different in regards to what we can tolerate. I avoid sweetcorn as it doesn’t digest, you can spend ages chewing and convince yourself you’re doing a good job only to find it all still intact in your bag 2 hours later! There are some foods I avoid in case I get a blockage, for example fruit skins, coconut, nuts and seeds as they can all cause blockages but I find a small amount of these things occasionally is ok. But again, everyone is different.
The one bee in my bonnet though is disabled toilets. Because ostomates may need to change their appliance they need space and a sink in the one place, the smell can be quite strong too so using a disabled loo saves embarrassment as well. The problem for me is that because I look young and healthy I feel people judge me for using these loos and have heard a couple of horror stories of ostomates being shouted at by someone thinking they have put the world to rights by telling off an able bodied person for their misdemeanour. I really wish the sign on the door didn’t have a wheel chair but some other universal sign that people would understand and I also would love for there to be some sort of thought provoking poster on the outside of the toilet perhaps showing two people, one who is clearly entitled to use the disabled loo and one who looks normal and for a short tagline to explain they are both entitled to use these loos.
People can be very insensitive despite knowing you have an ostomy. I remember one time being on an outing where we were to have a picnic lunch and a walk. However when I arrived I quickly realised there were no toilets anywhere. This meant I had to sit in the car without lunch because as soon as I eat my bag fills quickly and there was nowhere to empty it. After explaining this, and feeling awful because I couldn’t join in, a very persistent lady suggested I just empty behind a wall. She said ‘sometimes I need to wee on these trips and I just go behind a wall or bush.’ She didn’t understand the mess this could make and I resented that she seemed to think I was making a fuss over nothing so I promptly told her I wasn’t going to do that because I wasn’t a dog.
So if you have a friend or relative with a stoma perhaps consider their dietary restrictions if they come for dinner and that they may wish to use the upstairs loo instead of the downstairs one due to possible smells and that they’d rather not poo in the garden behind the wall!!! And if in doubt, just ask!
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