IBD comes with its own fears, for me, one of the biggest is the unknown. Even 14 years on I still don’t know how my disease will progress and what the future holds for me, just in the past year my inflammation has spread further than it ever has. So many people with these diseases will experience scary medication and surgery, however, sometimes we forget the small fears, the ones that plague us day to day.
I can laugh at these fears and you might too! They might seem so insignificant but when you’re in a flare everything is significant. It’s these small things I want people to be more aware of as well as the wider implications. So here’s a list of the 5 things I’m fearful of, day to day, in a flare.
1. Toilet roll
No I don’t have a fear of toilet roll, I’d be in a lot of trouble if I was! It’s actually the lack of, which concerns me. At any one time I am aware of how many toilet rolls are in the house! We buy ours in bulk to make sure we are always well stocked because immediate panic sets in when we are running low! You’ll find that a lot of people with IBD will have tissues available in their bag or pocket because the lack of toilet roll in public toilets presents another barrier.
2. An available toilet
When going anywhere I always make myself aware of available toilets in the vicinity. But this isn’t just about being out and about, this fear sets in in the house too. I’m lucky, we have two toilets in our house, lessening the panic, but if I’m somewhere where there’s only one I get anxious as soon as it’s occupied. In my teens we only had one toilet and my mum spent years having the quickest baths of her life! Ridiculously, the paediatric clinic I attended only had ONE toilet! ONE! You can imagine the trouble that can cause on clinic day!
3. Wearing white
If you’re a girl then you’ll already know the fear of wearing white bottoms during your period. However to this day I do not own and would not buy white trousers during a flare! No matter how nice the skinny white jeans are, accidents are far harder to conceal in them.
In general, I restrict foods that could irritate my bowel. Although diet can’t cure anything, limiting it can help me to control symptoms, and these foods vary with every person. Going to a restaurant becomes awkward unless they have a chicken or pasta dish that doesn’t come with raw veg, or dark green veg, or any veg with a skin! Trending foods like skin on fries become a pain (literally) unless mash potato is available too. The sad thing is though that when a flare is in full swing all food becomes scary. Anything has the potential to cause pain and have me rushing to the toilet soon after eating it.
5. Breaking wind
Yep, just a natural bodily function that is unavoidable. But when in a flare, breaking wind becomes blood and mucus meaning that even on the occasions I don’t have diarrhoea I still need to rush off to the toilet. It doesn’t matter if I’ve avoided eating to try and limit diarrhoea or I’m so fatigued I can barely move, breaking wind is something I can’t ignore.
For those without IBD, you might think all of this is too much information, but it’s the kind of information we need to share and be truthful about. It can feel so embarrassing to write these things about yourself and 10 years ago I wouldn’t have admitted it. But now it’s about time we break these taboos!
Do you see any fears there you can relate to? What are some of your day to day fears with IBD?