Invisible Illnesses: Inflammatory Bowel Disease
Invisible illnesses are often the subject of much confusion – the term covers a vast array of conditions, including the entirety of mental health. With the advent of the internet and social media, more information is available and people are beginning to appreciate the often destructive effects of invisible illnesses. However, beginning is very much the operative word. The overwhelming normality is still a world of misconceptions and stigma, meaning that on top of the actual illness itself, people are often facing a battle to either hide their condition or overcome that social stigma. Few conditions can claim to be the subject of quite as many misconceptions as Inflammatory Bowel Disease (IBD).
Often confused with Irritable Bowel Syndrome (IBS), which is a separate and unpleasant condition in its own right, it is considerably less severe and difficult to manage than IBD. Whether toilet humour, which so often accompanies both, is ever in good taste, is a matter of personal preference, but here, it detracts from the very serious nature of the condition.
IBD does include some of the same symptoms as IBS (diarrhoea, constipation, abdominal pain), but on top of that, patients can typically suffer from extreme fatigue, joint pain, eye inflammation, rectal bleeding, intestinal scarring, malnutrition and severe weight loss. Not things that can be taken lightly, and hardly conducive to a ‘normal’ lifestyle. As a digestive disease, it also requires a strict diet, avoiding fried and fatty foods, as well as caffeinated drinks.
Around 10 million people around the world are currently living with IBD, and the National Center for Biotechnology Information reports that these numbers are on the rise. It is widely accepted that there are many more living with IBD without a medical diagnosis. Due to the unpredictable character of the disease, and complicated nature of treatment, it is notoriously expensive to treat, costing the USA an estimated $2.2 billion a year.
While there is no cure for IBD, a range of medications can be used to reduce symptoms and allow those with IBD to live more or less unhampered by the condition. This being said, 60-75% of patients with Crohn’s disease (one of the two most common forms of IBD, along with Ulcerative Colitis) will require surgery at some point to repair their digestive system. 1 in 5 of those with Ulcerative Colitis will have severe symptoms that cannot be relieved by medication.
Nevertheless, things have improved. Increased understanding and better medications have led to a better outlook for those with IBD. One of the driving forces towards this continued improvement is World IBD Awareness Day, taking place every year on the 19th of May – a result of collaboration between IBD societies around the world, which has grown to include over 50 countries. The campaign calls on people to wear a purple a ribbon, in the same fashion as the successful Pink Ribbon campaign for breast cancer awareness, in order to draw attention to the disease; pushing governments and healthcare professionals to support the 10 million with IBD around the world, as well as attempting to reduce the stigma surrounding it.
As mentioned earlier, technology is changing the way we live and healthcare is no exception to that. One such example of this, and a useful tool for those not just with IBD but all chronic conditions, is the MyTherapy app. While we do have better treatment options, these options, especially in the case of IBD, often include rigorous regimes, which can obviously be difficult to balance with everyday life. The MyTherapy app seeks to take the difficulty out of these regimes. Developed in collaboration with healthcare experts and hospitals, the app is a simple platform which reminds you to take your medication whenever needed, tracks your symptoms and lays out your adherence for you in simple graphics. It gives the user an accurate overview of how their treatment plan is working for them. The sharing option makes it possible to share the information; be that with your doctor to work out how best to progress, or family and friends for extra to support with sticking to the regime. The app is free, easy-to-use and available both on iOS and Android.
The impact of IBD on a person’s life is so often underestimated, and can lead to others unfairly questioning the person, when in reality, they have no idea of the exhausting effort maintaining something like IBD is. Hopefully, with the help of campaigns like World IBD Day, and new solutions like the MyTherapy app, life with IBD can one day get to the point where this underestimation becomes a reality.
Author: Ruairidh Barlow