What not to say to someone with IBD

Today (19 May) is World IBD Day – 24 hours dedicated to raising awareness of inflammatory bowel disease, a set of conditions which cause inflammation in the bowel. The two most common forms of IBD are Crohn’s disease and ulcerative colitis – Enable editor Lindsay Cochrane was diagnosed with Crohn’s at the age of 18. Almost 12 years on, she’s learned a thing or two about bowels, and how people respond to it. Here, she shares some advice… 

It’s no secret that I have a big ol’ bowel problem (the last time I wrote about it here, I ended up in hospital for almost two weeks days later). It’s one of my favourite topics – I’m all for challenging the taboo around poo. For the last two and a half years, I’ve been working my way through a Crohn’s disease flare up which has proven very difficult to control.

At the moment, I’m on a pretty toxic cocktail of different medications, including a biologic which I have to inject into my stomach on a weekly basis. And I’m doing OK. Compared to six months ago, when I was lying in hospital, I’m definitely doing OK.

One of the things that bugs me most about having a bowel condition isn’t the constant trips to the loo (I was up to about 30 a day at my peak), or the occasional, er, accident, or the constant fatigue. It’s the assumptions people make. The help that they offer. The words of wisdom! Nine times out of 10? They don’t have a Scooby what they’re on about.

Don’t get me wrong. I don’t mind people asking questions. It helps to combat the misinformation. And, boy, is there a lot of misinformation. But some questions, and statements, are just plain daft.

So if you know someone with IBD – and you probably will, there’s 300,000 of us in the UK alone – here’s a handy guide of what not to say to them.

1. “You don’t look sick!”

Most of the time, I don’t look sick. I wear a lot of makeup, and I’m on steroids so I have ‘moon face’ and the chubby cheeks confuse people. Underneath all that? I might quietly feel like I’m dying.

2. “Have you tried aloe vera?”

People love aloe vera. And I’m sure it has its benefits for some people, but I’m pretty sure the NHS wouldn’t be spending tens of thousands of pounds on my medication if I could pop into a health food shop.

3. “Should you be eating that?”

You can sometimes feel the judgement as you reach for something that’s typically tricky to digest, or to pour yourself a glass of wine. Folk also like to tell you about their friend Jenny’s friend Jim who has colitis and can’t eat tomatoes, so what the heck are you doing having that? Newsflash – IBD is pretty individual. What works for me might not work for Jim, and vice versa.

4. “My cousin has IBS.”

IBD isn’t IBS! Inflammatory bowel disease, as the name suggests, involves inflammation in the bowel (or any part of the digestive tract in the case of Crohn’s). Irritable bowel syndrome doesn’t. People with IBD often end up needing surgery. They have to take lots of medication. IBS, while horrible, is much less serious. It’s a functional disorder, meaning the digestive system just doesn’t work properly, while IBD is an autoimmune condition.

5. “Does that mean you have a… bag?”

I don’t. That’s not to say I might not need an ostomy or colostomy at some point in the future – I was threatened with it at Christmas, but my doctor tried a different drug regime first. It seems to be sort-of working for now. But it’s not a very polite thing to ask. You don’t see me asking how you defecate, do you?

6. “Why are you so tired? You’ve not even been doing anything.”

Dunno, mate. Maybe it’s because my entire colon is riddled with ulceration and I’m on hefty medication to try battle it and I’m trying to lead a normal life at the same time? Fatigue is the symptom I’m struggling with most at the moment. I can go from quite perky to zombie in a matter of minutes. It’s the kind of tiredness that no amount of napping will cure. Where even sitting upright is a struggle. It’s not triggered by anything in particular – and it’s really hard to manage. It’s all part and parcel of the condition – and I hate it.

7. “You’re so lucky you don’t have to worry about your weight!”

This is the WORST. Sure, I don’t have to worry about my weight, but it’s because I’m chronically ill. I’d happily trade places with all the women (and it’s always women) who say this. You get to be skinny, but you do have to put up with the threat of pooing yourself in public. The choice is yours!

8. “I know someone who cured their IBD.”

No one can cure IBD. Next!

9. “You were OK yesterday.”

The beauty of this disease is that one minute you’re fine, and the next you’re not. It can change in an instant. Every day when I wake up, I have a little moment of, ‘I wonder how today will be.’ And you just have to go with it.

10. “Can’t you hold it in?”

Now. When my Crohn’s is bad, if I need to poo, I need to poo. There’s no ‘clench and carry on’ around here. I get a 30-second warning before whatever’s inside me has to evacuate, and my bowel doesn’t really care where I am. I am no athlete, but I have sprinted for the loo on more than one occasion. I have sped off, mid-conversation. If I have to go, I have to go. See why I scan any restaurant/bar/café I go into to locate the toilet as soon as I get there.

IBD is horribly misunderstood. And more needs to be done. In terms of research, treatment, diagnosis, understanding – the full whack. There’s thousands of us. And probably lots more who haven’t been diagnosed.

Living with this illness is hard. Sometimes, we need a bit of support. So if you know someone with IBD? Find out what you can. Ask intelligent questions. And just listen. Because honestly? That is so much more helpful than a bottle of aloe vera juice. Trust me. I’ve tried it…

For more information and advice on IBD, head to the Crohn’s and Colitis UK website.

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