The eight most common myths about inflammatory bowel disease dispelled

Over half a million people in the UK have inflammatory bowel disease, most often either ulcerative colitis or Crohn’s disease. The vast majority lead full lives with proper management of their condition. However, there are still many myths that persist about inflammatory bowel disease, from the causes to the treatments. Here we’ll dispel the eight most common myths:

Myth one: Inflammatory bowel disease only affects the gut

Inflammatory bowel disease causes many symptoms that affect or are related to the gut, including blood-tinged diarrhoea, cramps, loose stools, more sudden and frequent urges to open your bowels, loss of appetite, stomach pain and weight loss. However, patients often experience other symptoms called extraluminal features. 

Extraluminal features do not directly relate to the gut and include joint pain, often lower back pain and ankle pain, a blistering flaky rash, bright red colouring in the whites of your eyes and mouth ulcers. 

In general, if you have active gut symptoms, these extraluminal features will also be worse. However, it is important to note that not everyone with inflammatory bowel disease develops extraluminal features. 

Myth two: Inflammatory bowel disease is the same as irritable bowel syndrome

Both irritable bowel syndrome and inflammatory bowel disease cause gut symptoms, however they are two different conditions. With irritable bowel syndrome, your gut is healthy but is less tolerant to food, environmental factors and stress. This results in cramps, spasms, diarrhoea and bloating. However, it doesn’t need medical treatment or visits to the hospital. 

Inflammatory bowel disease is an autoimmune condition, where your immune system mistakenly attacks part of your gut. This causes visible changes in your gut — unlike with irritable bowel syndrome, your gut is not healthy and medical treatment is needed. 

Myth three: Inflammatory bowel disease is caused by stress

Inflammatory bowel disease is not caused by stress. However, stress can increase your likelihood of having flare-ups and their severity.

Myth four: You can have Crohn’s disease and ulcerative colitis at the same time

You can’t have both Crohn’s disease and ulcerative colitis. Ulcerative colitis is confined to the large bowel and targets the innermost layers (mucosal and submucosal) of your large bowel, while Crohn’s disease can affect both your large and small bowel, and can target all layers of your bowel (transmural). 

However, it can be difficult to distinguish the difference between the two conditions, and you may therefore receive a diagnosis of unspecified inflammatory bowel disease. This doesn’t mean that you have both conditions but that it isn’t possible to clearly diagnose whether you have Crohn’s disease or ulcerative colitis.

Myth five: Following a gluten-free diet can resolve inflammatory bowel disease symptoms

A gluten-free diet is not a specific treatment for inflammatory bowel disease. However, if you have ulcerative colitis or Crohn’s disease, you may find that certain foods trigger your symptoms, which may include gluten. 

You may see a dietitian to discuss how to adjust your diet to reduce your symptoms. However, this will involve looking at your entire diet and will not focus specifically on gluten. 

A gluten-free diet is, however, a treatment for those with an unrelated, autoimmune condition called coeliac disease. 

Myth six: You can stop taking your inflammatory bowel disease medication as soon as your symptoms stop

In general, you shouldn’t stop taking medication for inflammatory bowel disease. Consistent medication will reduce your chances of flare-ups and the severity of your symptoms.

However, there are two situations where you may eventually stop taking your medication, under the guidance of your doctor. 

As inflammatory bowel disease tends to improve with age, your doctor may recommend tapering back your medication, with a view to eventually stopping it, if your condition continues to improve significantly. 

Also, if you have ulcerative colitis that only affects the last few centimetres of your back passage (rectum) — a condition called proctitis — you may be able to manage your condition by taking your medication as and when needed.

Myth seven: You shouldn’t take inflammatory bowel disease medication if you are pregnant

Unless specifically advised by your doctor, you should not stop taking your inflammatory bowel disease medication when you are pregnant or when you are trying to get pregnant. 

It is important to maintain your general health when pregnant and suddenly stopping your medication can be detrimental to your health and consequently your baby’s health. 

There are a few medications that shouldn’t be taken in your third trimester as you approach delivery. If you are taking these medications, your doctor will advise you when to stop and will also closely monitor your condition throughout your pregnancy. Some of the newer medications have less evidence of safety so an early discussion with your consultant is sensible. 

Myth eight: Surgery is inevitable if you have inflammatory bowel disease

Surgery is not inevitable for either ulcerative colitis or Crohn’s disease, and when surgery is needed, the vast majority of people can continue living full lives afterwards. 

According to the charity, Crohn’s and Colitis UK, around 80% of people with Crohn’s disease will need surgery in their lifetime. In contrast, only around 15% of people with ulcerative colitis will need surgery. 

In Crohn’s disease, surgery is usually needed to remove particularly diseased sections of the gut. As Crohn’s disease tends to occur in patches, with some sections of the gut remaining healthy (skip lesions), when a diseased section is removed, the remaining gut can be joined back together and continue to function. 

In ulcerative colitis, surgery may be needed to remove your colon if the disease can’t be well-controlled with medication, or if there are early changes in your gut that suggest you are at high risk of developing bowel cancer. 

Your risk of bowel cancer does increase the longer you have ulcerative colitis, however, most people with the condition do not go on to develop bowel cancer.

For both ulcerative colitis and Crohn’s disease, symptoms can usually be well-controlled for many years with medication and dietary therapies. Complications that lead to surgery are not inevitable and can usually be avoided until much later in life. Modern medications offer much better control of inflammatory bowel disease and offer the potential to reduce rates of surgery significantly.