So your friend has just been diagnosed with inflammatory bowel disease (IBD) and you’re wondering what that means (for the both of you). Don’t worry! Life will surely go on for the two of you. Dining out, fun adventures and chill time are all still on the agenda. But you do need to be aware of the emotional and social issues that their condition makes them face. There’s every chance they will feel a bit embarrassed, upset or touchy in the early days, meaning they’ll be extra sensitive to your throw-away comments or bumbling curiosity.
So to help you avoid putting your foot squarely in your mouth, here’s our help sheet of things not to say to your friends with IBD.
“Will your colostomy bag smell?”
We thought we’d get this one out of the way first. The answer is: No. Trust us, whilst a colostomy bag is used to store material the body needs to get rid of, that doesn’t mean your friend is going to smell like a loo. Everything is sealed in and leaks are really uncommon, so they’ll smell just a lovely as they did before their operation.
Undergoing surgery and becoming an ‘ostomate’ (someone who has a stoma, which is the term for an opening that allows urine and stool to leave the body) can be a big deal for the person on the operating table, so all the compassion and understanding you can muster will help them get through it big time.
This query is actually one of the most common, not surprisingly as the wider community generally doesn’t have a great deal of awareness when it comes to Crohn’s and ulcerative colitis so misconceptions and misinformation tend to be rife.
“So, you’re never going to be cured?”
Yes, it’s true. It’s a condition that your friend will need to live with and manage for the rest of their life. But that’s okay! Plenty of people have managed to live their lives to the fullest while living with IBD. It’s possible to have Crohn’s or ulcerative colitis and still become a rock star, go bungie jumping or compete at the Olympics (but probably not all at once, that’d be a challenge for anyone).
The common perception many have – at least immediately after diagnosis – is that IBD is a life sentence. However most come to realise that living with IBD is just like anything else in life: you get used to it. Levels of stress, anxiety and depression can be higher in people with IBD than in the general population, something all good friends should be aware of. Promote a positive outlook on your friend’s behalf and you’ll be the best kind of person to cheer them up when they’re not feeling 100%
“Are you sure we should eat here? I don’t think the food will agree with you.”
Fear of missing out (aka FOMO – it’s a thing, Google it!) is a huge deal for most people. So next time you’re planning a night out, don’t make it worse for them by making social decisions based on your assumptions of their condition – that’s a sure-fire way to make them feel like they’re being cut off from all the available options.
The best person to judge what an appropriate activity/venue/event is for someone with IBD is the individual themselves (well, after their doctor of course). It’s really important to make sure your friend feels included and respected, not like they’re a special case that needs to be accommodated. If you’re worried about planning an outing or event, ask them to suggest activities or restaurants for you. They know their limits so they can take the guesswork and pressure away from you. All it takes to have an IBD-friendly social life is a bit of open communication, respect and trust that they can look after themselves just fine.
Date: 22/09/2014 IRIS number AU-REM0328