10 Things you need to know about inflammatory bowel disease
Here we separate fact from fiction and give you the lowdown on inflammatory bowel disease
1. It’s not just about poo
When people think about inflammatory bowel disease (IBD) – the umbrella term for Crohn’s disease and ulcerative colitis – they tend to only consider the digestive symptoms, which include stomach pain, bleeding when you go to the loo, and diarrhoea. While these can be debilitating, IBD actually goes far beyond this. The disease can impact almost every part of your body, with extra-intestinal manifestations including eye problems, painful joints, skin issues, and mouth ulcers.
One common symptom is fatigue, impacting up to 72% of patients when flaring, and still affecting a third of people even when they’re in remission. Fatigue is a symptom that’s difficult to fully explain; it goes far beyond regular tiredness and, however long you sleep, the feeling still remains. Yet, because of this, many IBD sufferers find themselves being labelled as lazy and unmotivated – when this could not be further from the truth!
2. It’s proven to impact your mental health
It’s thought that those with IBD are twice as likely to experience anxiety, and are at an increased risk of postnatal mental health issues, too. There are potentially many reasons for this: being diagnosed with any long-term illness can be difficult to cope with, but the nature of IBD’s symptoms can also make socialising difficult, with sufferers embarrassed to share the reality of their condition. That’s why considering the mental health of IBD patients should be just as important as considering physical symptoms.
3. There’s no cure
Many individuals with IBD are lucky enough to go through periods of remission, but there’s currently no cure. However, things like surgery, and a range of medications, can make it manageable, and possible to live a full life.
4. Diagnosis can be a long journey
While more than 300,000 people have been diagnosed with IBD in the UK, chances are the number of people living with it is probably far higher, since it can remain misdiagnosed for many years. IBD can be difficult to diagnose, as a colonoscopy is the best way to confirm the condition, but without this some patients might be initially diagnosed with the less serious condition of irritable bowel syndrome (IBS).
5. It’s very different from IBS
Talking of IBS, it’s worth knowing that while there might be only one letter difference between them, IBS and IBD are worlds apart in many respects. IBS can of course be debilitating, but unlike IBD it doesn’t cause any ulceration or inflammation, meaning it doesn’t usually need treating with medication or surgery.
6. A healthy diet can help – but it’s not a cure
We all know the importance of nutrition when it comes to our gut health but, unfortunately, it’s not so simple in the case of IBD. Many find a change in diet can help reduce symptoms, but what works for one, does not work for all.
“Everyone is very different in the way IBD behaves, and what you can eat will vary depending on phases of disease,” explains Dr Sammie Gill, a registered dietitian who specialises in gut health.
“There is no specific diet that can prevent or treat IBD, but there may be some foods that patients are sensitive to, such as alcohol, spices, caffeine, or large amounts of nuts, seeds or raw vegetables, and fruits with skins,” Dr Gill adds. Keeping a food diary and working with a dietitian may be beneficial.
7. Stomas should be celebrated
Some people with IBD are given a stoma (an opening that diverts your poo into a special bag, allowing the small intestine or colon to heal). While some stomas are temporary, many live permanently with them, and find they change their lives for the better. Unfortunately, stomas can be perceived as embarrassing or disgusting – with controversy sparked last year when stomas were pictured on cigarette packs to discourage smoking, and the colon cancer risk that comes with it.
Yet, for many, this procedure massively increases their quality of life, and users are campaigning to normalise them. “Electing to live with a permanent stoma was by far the best decision I’ve ever made,” explains Shell Lawes, who chronicles her life with a stoma on her Instagram page. “My stoma gives me freedom I never had when IBD had its grip on me. I am not ashamed of my stoma, I respect it, and life has vastly improved with it,” she adds.
8. Patients are in good company!
IBD is more common than you think, and the condition doesn’t discriminate when it comes to who it affects.
9. It’s an invisible disability
Don’t judge a book by its cover! Many IBD patients might look the picture of health, which means they can even be accused of faking it when it comes to using a disabled loo. Accessing disabled toilets is vital for things like changing colostomy bags and avoiding accidents, but a general awareness of this is lacking.
10. IBD can massively impact relationships
Along with its physical symptoms, it’s worth knowing that IBD can also significantly impact relationships. The chances are you probably know someone with the condition – whether it’s a friend, colleague, family member, or partner. Communication issues can be a problem; those with IBD can find it difficult to explain why they can’t attend social gatherings, while symptoms can lead to fear of leaving the house, and can affect patients’ sex lives and body image.