The emotional impact of having inflammatory bowel disease (IBD)

Inflammatory bowel disease (IBD) is a group of chronic inflammatory disorders affecting the intestine and/or other organs among which we can highlight, mainly: Crohn’s disease and ulcerative colitis. Both present a similar symptomatology that frequently manifests with abdominal pain, diarrhoea, isolated bleeding, blood in the stool (rectorrhagia), weight loss, among other symptoms.

Due to this symptomatology and the chronic nature of the disease, with moments of flare-up and remission, these pathologies have an effect at an emotional level. Especially in times of flare-up, the symptoms have a direct impact on patients’ general well-being, as they see their physical condition affected and, therefore, their autonomy to carry out certain daily activities at a family, social and professional level. However, even patients with controlled symptoms report a clear impact in one or more of these areas.

Emotional support and IBD

According to one study ², most patients believe that IBD has a negative psychological impact and that their disease worsens when they feel anxious (82%) or depressed (67%). More than half of patients feel sad or depressed (58%) or have anxiety (51%) at some point during the course of their disease. Most doctors (80%) agree that psychological aspects have an influence, so it is essential to maintain good emotional health to improve the course of the disease.

The social impact of IBD

IBD also imposes an additional burden on the social, professional and family life of those who suffer from it. They report impacts at the level of relationships with family or friends or in leisure and recreational activities. It also has an impact at a professional level, conditioning their work, the acceptance of promotions or even, in some rare cases, the loss of their job.

In younger patients, academic difficulties are reported, as well as problems finding a job.

The impact of IBD on sexuality³

As with any disease we suffer from, if we are not physically or emotionally well, our sexuality3 (broadly understood) may be affected.

It is true that, IBD, since it usually appears in adolescence and/or in young adults, can have a greater impact on the development of our sexuality. At this age, body image, self-esteem and personal relationships are of great importance, and IBD could affect full sexual development by causing decreased libido, body image concerns, anxiety or stress, especially in cases where there is a stoma or ileostomy.

Patients consider that suffering from IBD has caused a decrease in libido (almost 50%), prevents them from continuing intimate relations (45%), is associated with the break-up of a relationship (36%) or worsening of sexual activity (> 35%) and has made them choose abstinence, especially during the active phase of IBD (67%) but also during remission (19%). Patients also recognise that UC affects their ability to have children (17.2%) and their ability to care for them (41%).

As explained in one of the support platforms you are informed of when you are diagnosed with IBD, Educainflamatoria ¹, it is important that upon diagnosis of the disease, we become aware of what our new condition means and that we rely on the team of professionals around us to manage the possible frustration, fear or uncertainty that may arise in any of these areas.

We must understand that when we do not ask questions, the problem does not exist for others and, therefore, it will not be addressed and solutions will not be provided.

It is essential to be able to confidently discuss these issues with the medical team supporting you, even though it is sometimes difficult to openly share aspects of your intimate life with health professionals, or you may not be clear about whether these issues should be discussed with them or with another professional, or whether they are not considered a priority in your health. 

Nursing, within the multidisciplinary team that will work hand in hand with the patient, has a very important role in this area. One of their tasks is to provide emotional support and health education and to accompany the patient in this process.

If you feel that living with your disease is causing you stress, anxiety or sadness, speak to a professional you trust so that they can help you, both clinically and emotionally, to manage the impact that the symptoms are having on your life. They will also advise you or refer you to professional experts in employment issues.

With help, planning and care, it is possible to have a full life with less negative physical, psychological, social and sexual impact from your IBD.

1. Marín-Jiménez, I., Gobbo Montoya, M., Panadero, A. et al (On behalf of GETECCU Study Group and ACCU): Management of the Psychological Impact of Inflammatory Bowel Disease: Perspective of Doctors and Patients—The ENMENTE Project, Inflammatory Bowel Diseases, Inflamm Bowel Dis, 2017, 23(9),1492-1498, Doi:10.1097/MIB.0000000000001205. https://academic.oup.com/ibdjournal/article/23/9/1492/4560710?login=false
2. https://educainflamatoria.com/bienestar-y-apoyo-emocional/como-afecta-la-enfermedad-inflamatoria-intestinal-a-mi-bienestar-emocional-2/
3. https://educainflamatoria.com/vida-sexual/
4. Calvet X, Argüelles-Arias F, López-Sanromán A, Cea-Calvo L, Juliá B, Romero de Santos C, Carpio D. Patients’ perceptions of the impact of ulcerative colitis on social and professional life: results from the UC-LIFE survey of outpatient clinics in Spain. Patient Preference and Adherence. 2018:12 1815–1823.