The truth about living with Inflammatory Bowel Disease

The condition of which one in four newly diagnosed people are under 16


Over the past year or so you may have been scrolling down your timeline and seen pictures of people with an odd looking bag attached to their stomach, accompanied with the hash tag #getyourbellyout. This has been a largely successful campaign by the charity Crohn’s and Colitis UK that has got people talking about Inflammatory Bowel Disease (IBD). But what exactly is it, and how does it affect people’s lives?

What is IBD?

IBD is the collective term for the chronic conditions Crohn’s Disease and Ulcerative Colitis, diseases that cause inflammation in the digestive system. Colitis can affect the colon (large bowel) and rectum, and Crohn’s can inflame any part of the gut, including the oesophagus, ileum (small bowel), and colon. Most people require medicine to keep the inflammation under control, their treatments ranging from tablets, to injections, to infusions. Colonoscopies are also needed frequently to keep an eye on the development of the disease. However, sometimes these approaches are not enough, and surgery is required when the condition becomes too severe to cope with.

After surgery, many people are left with what’s called a stoma – an opening of the intestine onto the abdominal wall, over which a bag can be fitted and sealed to the skin. Online awareness of IBD has largely brought attention to ostomy bags, most famously by Bethany Townsend’s bikini picture.

Living with Crohn’s has its challenges

However, sharing experiences online can be easier than doing so in real life. James, 19, reveals he had “personal difficulty” sharing the fact of his ostomy in the past with friends: “It took me a few months before I could tell them about it. But this year specifically, I was able to tell my new flat mates about it within the first week, and they all understand.” Some people tend to screw their nose up at the thought of an ostomy bag or anything  poo related at all, however, James feels that there isn’t so much a stigma against it, rather that the “conditions are so unknown that people don’t know how to react.”

Living with Crohn’s or Colitis has many challenges, and people often misunderstand the fluctuating nature of the disease. We can do everything you can do one day and the next day you won’t see us in class cause we’re constantly in need of the toilet or physically unable to leave bed. It’s pretty shit at times (pun intended), as during flare ups, when inflammation worsens severely, people experience diarrhoea, blood in their poo, mucus – the works.

Your social life revolves around the nearest toilet

As you can imagine, it can be hard to navigate a social life, especially for young people. A constant worry for us is, “where’s the closest toilet?” This is probably the most embarrassing issue when living with IBD. Sleepovers, parties, any social gatherings, are often tainted by the question, “what’s taking them so long?” when you’ve rushed off to the toilet and have been there for 45 minutes. We’re also shot accusatory looks when we use the disabled toilets. Since our condition is not always so obvious from our appearance, people assume we’re just bunking the cue and make us feel bad for using a private toilet – even though we are absolutely entitled to. Thankfully, Asda has introduced new signs on the disabled toilets in 400 of their stores, highlighting the existence of invisible illnesses.

Many people are ignorant to the other, more unknown symptoms and effects of IBD, such as fatigue. Fatigue in itself is often refuted and belittled, and to have people call you lazy when you barely have energy to get out of bed is hurtful and frustrating. We can also experience joint pain and are at a high risk of osteoporosis. There are times when we have to miss out on fun experiences because we physically are unable to partake, like having to abandon your trek up a mountain because you feel that burning sensation in your bum that warns you to find a toilet fast.

Just because I don’t look sick, doesn’t mean I don’t have a problem

One of the most common and frustrating things for us is the feeling that our condition isn’t taken seriously because of its apparent invisibility. The phrase, “you don’t look sick” is perhaps intended as a compliment; however, it simply undermines the legitimacy of our disease. IBD is real and it is a constant burden to bear, whether we’re inside watching Netflix or partying in a club.

Like any chronic condition, there is also an impact on mental health. The stress of having to learn how to cope with a stoma, balancing uni with hospital trips, and acknowledging the bleak fact that you’re going to have this condition for the rest of your life can lead to a cycle of negative thoughts. Depression has been diagnosed in a number of sufferers, as the reality of our condition sets in. Anxiety about future operations, flare ups, and missed opportunities can plague our minds, as we anticipate a low quality of life ahead of us.

But there is hope. More research is being conducted in the UK and beyond to develop medicines, and to find the exact cause of the disease. If we find the cause of the disease, we can one day hope for a cure. Until then, help us on our journey by being sensitive, considerate, and kind.