Misconceptions and myths about inflammatory bowel disease are common and you may come across them when researching your condition.
On this page you will find some of the most common misconceptions about inflammatory bowel diseases (IBD), balanced with reliable information based on medical research.
IBD is not the same as irritable bowel syndrome (IBS). Some of the common symptoms of IBD and IBS overlap, but they are not the same condition.1
IBS causes discomfort and emotional distress but, unlike IBD, it does not damage the gut. While inflammation of the gut is characteristic, ongoing, and slow to resolve in IBD, IBS patients show low grade or even no inflammation.1
This is not true. Diet cannot cause IBD; it is a chronic (long-term) autoimmune disorder.
Because neither Crohn’s disease nor ulcerative colitis are caused by diet, there is nothing you can eat or stop eating to cure them.
IBD is cause by a combination of genetic and environmental reasons. If you have genes that make the immune system more prone to developing IBD, environmental factors, like diet, may cause the immune system to react and be ‘triggered’, resulting in IBD.2
There is no ‘Crohn’s and colitis diet’; research has not been able to prove the connection between IBD and any specific dietary factor.3 Many people with IBD come up with their own personal diets based on their preferences or experience with foods that make their symptoms better or worse. No evidence has been found to support the idea that there are certain foods that you can eat – or avoid – to cure your IBD.3
To find out how best to approach your diet in a way that works for you, read more about nutrition in IBD. You can also try tracking your diet in our Food Diary to help determine what foods might be influencing your IBD.
Stress does not cause IBD; it is a chronic autoimmune disorder.
Old misconceptions about stress causing IBD are difficult to dispel. Even though we now know this not to be true, it is an idea that persists around IBD.
Although stress does not cause IBD, it can make your symptoms worse. This is related to something called the ‘gut-brain axis’; inflammation in the gut can affect your mood and your mood can impact your gut, so you may see a link between when you’re stressed and when your symptoms get worse.4
Living with IBD can be incredibly challenging and cause you to become stressed in many different ways. Your doctor should advise you to look out for your mental and emotional health and to talk to them if you are struggling. They can then offer you appropriate support.5
People with IBD report that they worry about their condition constantly (23%) or every day (35%), and this got worse for many during COVID.6
Maintaining mental wellbeing is important in managing your health generally.7 Read more about Mental health in IBD.
Crohn’s disease and ulcerative colitis do not directly affect fertility.
Although people with IBD are more likely to not have children, this appears to be due to choice, rather than any effect of IBD on fertility, because people with IBD have similar levels of fertility to the rest of the population.
Reasons for remaining child-free can be due to worries about:8,9
Most people with IBD have a normal pregnancy and delivery and give birth to healthy babies. Research shows that periods of remission are the best time to conceive and carry, particularly if you have Crohn’s disease, where active disease does slightly lower fertility.10,11 Being pregnant does not increase risk of relapse.10 To find out what other factors to consider when trying for a baby, read more about Fertility and pregnancy with IBD.
Passing IBD on to your children is possible, but not inevitable. If one parent has IBD, the chance of a child developing IBD is around 2%, rising to 30% if both parents have it. It’s still not known exactly how IBD is passed on, and additional factors are needed to trigger the development of Crohn’s or colitis.12
Crohn’s & Colitis UK have more information about Reproductive health.
The primary symptoms of IBD appear in the gut, but the inflammation that causes it can have an impact elsewhere in the body.
You might experience dry eyes, swollen and/or itchy eyelids, and red or inflamed eyes. Your doctor can help with treatment and in some cases may refer you to an ophthalmologist.13-16
You might develop red or dark bumps and patches on your skin, very sore patches (often near your stoma, if you have one), or tender, red bumps. Treatment may be with steroids and/or immunosuppressants. You may need to see a dermatologist.14-16
You might experience pain or swelling in your joints or inflammation of the tendons around the joint. It may not be obviously connected to your IBD by a gut specialist, so you should always talk to your doctor about new symptoms.15
Vaccination is recommended, particularly as some treatments for IBD might make you more vulnerable to infectious disease.
People with IBD who are not on immunosuppressive therapy can have vaccinations as normal. Those who are taking immunosuppressive medicines should, if possible, be vaccinated before starting treatment.17
People with IBD who are on immunosuppressive therapy are more at risk of infectious diseases, many of which can be prevented by vaccination.17,18
Research recommends that people with IBD have the following vaccinations: annual seasonal inactivated influenza (all), pneumococcal (all), hepatitis B (all seronegative), human papillomavirus (HPV, recommended in young people with IBD), and herpes zoster (people with IBD aged 50 years and above).17,18
Everyone with IBD is recommended to have the COVID-19 vaccination.19
Read about NHS vaccinations here. You should consult your doctor before taking a vaccine.
Not necessarily! For some patients, having surgery can improve their symptoms or let them stop taking some of their treatments.
You might be offered surgery if your treatment has not helped, or you have not achieved remission.20 Depending on the part of your gut affected, it might be appropriate for you to be offered surgery as part of your treatment to improve your condition.21
About 10 people in 100 with ulcerative colitis will need a surgery in the decade after diagnosis.22
About 9 out of 10 people with Crohn’s disease need surgery at some point in their lives.23
It’s also important to know that people with IBD can see a significant improvement in health-related quality of life following surgery.24
It is never a good idea to stop your medicines without speaking with your doctor. Your treatment is maintaining your remission. New symptoms might be side effects from treatment – your doctor will tell you if you should stop or change your medications.
Because the causes of IBD are not totally understood, we do not have drugs that can cure it. Instead, the aims of treatment are to reduce the inflammation to the point of remission (where you have no symptoms), and then to maintain that remission.25 If you feel well, that means the treatment is working to maintain remission.
Undesirable effects of treatments are called ‘side effects’ and some of them are predictable and common. You can find out what to expect from the information that comes with your medicine and from your IBD team. If your treatment is difficult to tolerate or is stopping you taking it, you should tell your doctor. They may be able to give you other medication to tackle the side effects, switch your medication, or give you advice on stopping the treatment gradually. Some drugs can be dangerous to stop suddenly.
Actually, it’s possible that your doctor will offer you a new treatment, or suggest you join a trial of a new drug in development!
Your doctor may decide that you are a suitable candidate for a new treatment that has just become available for people with Crohn’s disease or ulcerative colitis. They will explain the possible benefits and risks before offering it to you. You may decide to try it, or you may prefer to remain on your current treatment.
Alternatively, you or your consultant might come across a new treatment for IBD that is in clinical trials. Clinical trials are usually first done in a healthy population to check they are safe and then later trials are done in the ‘target group’ – people with the condition that the drug treats – to see how effective it is. Taking part in a clinical trial can mean you are one of the first people to benefit from a new treatment. However, be aware that the trial may find that the new drug is not as effective as expected or may be no better than existing treatments.
You can find information about current trials in the UK from Be Part of Research.26 Patient organisations often provide news updates on medicines in development. Crohn’s and Colitis UK also have information on treatments that may be available soon in the UK, including drugs that have been approved as safe but may not be funded by the NHS.27
There is no evidence for the efficacy (effectiveness) of complementary and alternative medicines (CAMs) in the treatment of IBD. Your doctor will provide you with evidence-based medical treatment aimed at addressing your symptoms and diagnosis.28
CAMs are non-conventional medicine products or medical practices that include herbal and dietary supplements, probiotics, traditional Chinese medicines, and many forms of mind-body practices.28 There are several reasons patients may turn to CAMs, however it is important to remember that CAMs have very limited evidence about how effective and safe they are and are not endorsed by recognised regulatory bodies. Compare this with conventional medical therapies that your doctor prescribes in the management of IBD, which undergo stringent approval processes.28
If you decide to use or are using CAMs, you should discuss this with your doctor, as certain oral CAM therapies may have side effects, interactions, or organ-specific toxicities.28 You should also not stop taking your prescribed medication without a discussion with your doctor, as some drugs can be dangerous to stop suddenly.
*IBDrelief patient survey data from 167 respondents with IBD in the UK. 23% of respondents said they worried about their condition ‘constantly’ and 35% they worry about it ‘every day.’6