There is no evidence that IBD is caused by psychological issues, though they can influence how you experience IBD. Prolonged tension, stress and anxiety is not beneficial for any chronic condition, including IBD. Just like with high blood pressure, heart disease, and asthma, being stressed out can bring on or make symptoms worse.

Some people confuse IBD with Irritable Bowel Syndrome (IBS), which has been called spastic colitis or spastic colon in the past. IBS is caused by a disturbance of function of the colon, and does not involve inflammation in the intestines like with IBD. The cause of IBS is also poorly understood, and in some cases emotional factors can contribute to symptoms.

Much of the psychosocial research in IBD dedicates some portion of the study to examining something called "quality of life (QOL)" or "health related quality of life (HRQOL)." But what exactly do these terms mean? One of the struggles for researchers in this area is to generate a consistent definition of QOL/HRQOL; but because these concepts involve a lot of subjective interpretation this proves challenging.

Quality of life (QOL) has been defined as the “reflection of the way that patients perceive and react to their health status and to other, non-medical aspects of their lives”

Health Related Quality of Life (HRQOL) more specifically examines life satisfaction or happiness as it is affected by illness. HRQOL can be measured either in personal/experiential ways or using a more scientific/normative approach. A personal and experiential definition of HRQOL is "optimum levels of physical role and social functioning, including relationships and perceptions of health, fitness, life satisfaction and well-being. It should also include some assessment of the person's level of satisfaction with treatment, outcome, and health status and with future prospects" (Bowling, 1995a: 2).

No true consensus has been reached about the definition of QOL/HRQOL. However, there are hundreds of validated surveys and measurements of QOL/HRQOL that are used in thousands of research studies. So how does this apply to IBD research? What contributes to HRQOL, both positively and negatively?

HRQOL is influenced on several social levels, so that the model used to describe this has been likened to an onion - think a series of overlapping layers with the physical, mental, and spiritual well-being of the individual at the center. The next layer is family and other extended social networks including friends and partners, with the norms and obligations that come with them. Next is the community or societal level, which includes work, income, and housing. Finally, at the outer layer is the "Global Village" that encompasses cultural influences, human rights, and social welfare. One can conclude then that HRQOL is influenced, at least partially, by our social world. So how people present (or choose not to present) themselves and their illness to others can significantly impact their HRQOL. But this is just part of the equation. How others interpret IBD is another important factor, since the only thing we can control is our reactions to others, not others reactions to us. This is a topic that will be addressed in future entries.

A consistently important finding is that patients who are involved in medical decisions about their treatment are able to take their personal HRQOL fully into account. Often in IBD treatment, a balance needs to be found between the positive and negative aspects of treatment options. Negative impact on HRQOL from a particular treatment may outweigh the therapeutic benefits, especially if the treatment significantly impacts emotional and physical functioning. This is where the patient-physician relationship becomes very important, where the patient is comfortable enough to voice concerns and be part of a health care team versus the passive receiver of medical treatments.

Related to this, research has shown that people diagnosed with IBD voice several concerns about their illness. In the late 1980's, the "Rating Form of IBD Patient Concerns (RFIPC)" was developed at the University of North Carolina by Dr. Douglas Drossman and colleagues. They decided to design the RFIPC based on anecdotal patient reports of worries and concerns to gauge how common these concerns were in the greater IBD patient population. The RFIPC is a 25-item questionnaire that measures four indexes of concerns of IBD patients: impact of disease, sexual intimacy, complications of disease, and body stigma. The survey has been validated and used in several research studies since then.

The greatest concerns among patients included:

the uncertainty of having IBD
effects of medication
threat of surgery or having an ostomy
developing cancer
decreased energy levels
being a burden to others
body-image

How does this relate to HRQOL in IBD? The greater the worries a patient experiences about having IBD the poorer their quality of life will be, regardless of symptom severity. Disease activity does not appear to be a consistent factor in predicting the level of disease-related concerns in IBD patients, so people who have very severe symptoms may not always report the most concerns. Crohn's Disease and Ulcerative Colitis patients typically have similar scores on the RFIPC though some group differences exist when analyzing specific types of concerns.And finally, women tend to report greater concerns than men. So this tells us that psychological factors, such as worry or concerns about illness, may contribute to poorer outcomes; making this an important area for continued research and intervention.

IBD is not contagious. While the cause of IBD is unknown, some scientists suspect certain types of bacteria such as strains of mycobacterium may play a role. To date, there is no convincing evidence that IBD is caused by an infection. We do know that IBD is a disease that arises from genetic predisposition combined with some environmental trigger. But it is not transmitted from person to person, like the common cold or other infections.

One of the most important things patients can do is become more educated about their illness, so that they may make informed decisions about their care and day-to-day activities. There are a multitude of sources of information - some great, some not so great - for IBD patients. Over time, some myths about IBD have surfaced that you should be aware of. This information is valuable to share with others in your life who may not have much knowledge about IBD in general, or have some misconceptions about Crohn's and Ulcerative Colitis. While there may be other myths, those included in the "IBD Mythbusters" series tend to be more common than others. A new myth will be posted each week.

The Northwestern Center for Psychosocial Research in IBD blog "IBD R&D" will bring you news and updates from the world of research and other supportive information about Crohn's Disease and Ulcerative Colitis. Our emphasis will be on information about living and coping with being diagnosed with IBD. Information will come from clinical psychologists, nutritionists, and other invited experts in the field. So please check back often.