World IBD Day - making the invisible, visible and removing the stigma around bowel diseases


by Aliza Marogy

World IBD Day - making the invisible, visible and removing the stigma around bowel diseases

As a society, we have made talking about anything to do with gut health, taboo. In doing so, we have inadvertently perpetuated the suffering and challenges that those with serious bowel conditions endure. Today is World IBD Day, a day dedicated to spreading awareness about Inflammatory Bowel Diseases, with the goal of improving diagnosis and increasing societal awareness of the difficulties faced by patients. The hope is that by opening up the conversation around IBDs and other gut disorders, we may mimic some of the positive progress we have seen happen for other conditions such as mental health - in lifting stigma, fear, and shame - bettering life for patients, their families and carers. 

What is IBD? 

Often described as 'invisible' illnesses, Inflammatory bowel diseases are lifelong autoimmune conditions that are relapsing and remitting in nature, affecting 10 million people worldwide. In the UK, roughly 300,000 people are currently diagnosed with either Crohn’s disease or ulcerative colitis - the two most common IBDs. With around 1 in 420 British people suffering ulcerative colitis and 1 in 650 affected by Crohn’s, you’d expect that we’d all know more about these illnesses, but the reality is that many people have no idea about what the symptoms are, don’t have a benchmark for what gut behaviours are ‘normal’ and are too embarrassed to discuss the goings on in their gut because as a society we are ashamed to talk about our bowel habits. The result? There are likely many more people unknowingly living with IBD - which is an issue, because early diagnosis leads to more successful management and better treatment outcomes. 

What are the symptoms of IBD & what causes it?

IBD symptoms can be similar to those of other conditions, which may be a contributing factor to late diagnosis. The disease and its symptoms can affect each patient differently, but during periods of active disease, common symptoms include: 

Frequent diarrheoa - 5-30 times a day is not uncommon, and if you’ve ever had food poisoning and know how unwell and weak it can make you feel, you get an idea of how unwell IBD patients can become after weeks, months and sometimes years of experiencing this symptom. 

Chronic constipation - this is less commonly seen, and is a symptom which can present as a result of inflammation of the rectum - the lower part of the gastrointestinal tract.

Fatigue - for some patients with particularly virulent disease, this can be severe enough to impact their ability to execute light tasks or even walk short distances.

Abdominal pain, nausea, and bloating - some patients don’t experience these symptoms, whereas others describe the pain they experience as ‘crippling’. 

Blood and mucus in or on attempting to pass stool - this can occur as a result of damage to the GI tract due to ongoing inflammation. Blood in the stool is always a ‘red flag’ symptom and could indicate other medical conditions such as colon cancer, so if you spot this - either as fresh blood or blackish coloured bits (often described as looking like coffee grounds) - it’s imperative to see your GP for a referral to a gastroenterologist. 

Extraintestinal symptoms - Although IBDs are illnesses of the GI tract, they are sometimes described as ‘systemic’ diseases. This is because the inflammation may affect other areas of the body. It’s not uncommon for IBD patients to experience joint, eye and skin issues, though extraintestinal inflammation can affect anywhere in the body. 

One very important issue, which often goes forgotten, is the mental health impact of having a lifelong illness that can be unpredictable and difficult to manage. One survey revealed that during a flare up, 80% of IBD patients suffered anxiety and 60% reported symptoms of depression.   

If I think I have IBD, what should I do? 

If you notice any changes to your gut function lasting more than a few weeks, it’s important to book an appointment with your GP to rule out other causes and to have your symptoms properly checked. If it’s supected that you may have IBD, you should be referred to a gastroenterology team as soon as possible for further investigation. 

How does IBD affect the lives of patients? 

Crohn’s and ulcerative colitis patients are usually able to live a full life when they are in remission, however, during a flare - which may last many months or years, and can be extremely debilitating - ordinary life can be restricted. It affects everything from work to school to friendships and dating. 

Many young patients fear they may never have a ‘normal’ life, go on to find love, have a family or the career of their choice. For those of working age, career prospects can be curtailed, job security is a constant worry, and ability to be a great parent are a concern. 

For all patients, embarrassment and shame is a running theme, a simple commute on a bus or train can be petrifying, and fear of eating, failing to get to the bathroom on time, and what the future holds, loom large. Managing expectations of friends and family can be difficult too, especially when often, the impact of the disease isn’t obvious. 

And it’s not just patients who are affected;- parents lose around 20 working days per year in caring for their children with IBD. 

How can I help a friend, family member, or colleague with IBD? 

Ask them what you can do to improve things for them at this time. Many with chronic conditions are reluctant to request the support they need, and simply opening the conversation can be a start to improving their quality of life. If your friend with IBD has had to cancel social plans, consider offering to visit them if they would still like to meet. If your employee is in a flare and they fear the journey to work because they’re feeling nauseous or concern about the lack of bathroom access, offer to allow them to work from home, or if they need a rest in the day, suggest they make up the extra hours in the evening if that works for them. We’re all teleworking at the moment, so we know that for many jobs, it is perfectly possible to work in this way. 

I’ve just been diagnosed, what does this mean for me & how can I get the support I need? 

Having a new diagnosis of IBD can raise feelings of fear and isolation, and you will likely have many questions. There are associations all over the world which are there to support you as well as to answer any queries and provide information on all aspects of the illness. In the UK, the main one is Crohn’s and Colitis UK.

What treatments are available? 

Medical treatment is aimed at dampening inflammation and suppressing the immune system. There are a variety of different drugs which your medical team can try, but it can take some time to find an effective treatment, as not all medications work for everyone. Many respond well to drug therapy, but unfortunately some don’t, which means around 23 to 45 percent of people with ulcerative colitis and up to 75 percent with Crohn's disease will require surgery at some point. Some surgeries can be life-changing, but more common are smaller operations to remove damaged parts of the GI tract. To make things more complicated, the course of the disease can be unpredictable, and a medication which may have been previously successful may not work for the same patient at another time.  

Are there any complementary therapies that can help? 

There is evidence that diet and lifestyle can contribute to the development of IBDs and may also be an important aspect of managing the condition. However, complementary measures or therapies should be just that - used to complement medical management to boost treatment outcomes. Additionally, some supplements such as probiotics - which can benefit some people - may be contraindicated for certain patients, and there is a risk of some supplements being unsuitable for use alongside specific medications. The inflammation which characterises IBD can quickly spiral out of control and lead to serious complications if incorrectly managed, so interventions such as diet and supplements should be incorporated only whilst under the care of your gastroenterologist of IBD nurse, and with the advice of a qualified and registered dietitian or nutritional therapist experienced in working with IBD patients. However, stress management techniques such as meditation, light exercise, and implementing good sleep hygiene, are safe to incorporate daily. 

What does the future look like for me? 

During a relapse or first ever flare-up - which may have been going on for a while - it can be easy to feel as if life will be curtailed forever and you may not be able to achieve the goals and milestones that you envisage for yourself, or indeed simply to live a ‘normal’ life. Statistics show that the majority of patients will go on to enjoy periods of good health once their illness is well managed. Some may go on to have life-changing surgery, but with the right support, you can go on to achieve the career goals you dream of, travel, have a happy relationship or start a family. It can be hard to stay positive about the future when you are sick, but it’s not uncommon for IBD patients to forget the difficult periods of a flare-up once they are back to health and making the most of life. 

If you enjoyed reading this article, you might like Inflammatory Bowel Disease, medical management and complementary therapies Part 1.

 

Post author

Aliza Marogy

Nutritional Therapist, ND & Founder of Inessa