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Inflammatory bowel disease and anxiety

This page posted 28th April, 2014

By Voula, ADAVIC Volunteer


In this article I discuss my experience of living with Crohn’s disease, a form of inflammatory bowel disease (IBD), and the impact of living with IBD on my emotional wellbeing. Chronic physical illness can negatively impact emotional wellbeing, leading to anxiety and depression. Common symptoms of Crohn’s disease are diarrhea and/or constipation, lack of appetite, food intolerances, fatigue, bleeding from the digestive tract, anemia, low grade fevers, abdominal pain, joint pain and nausea. There are no known cures, though medications can bring about remission. Some people go into remission for very long periods of time and others have continuous fluctuating symptoms.
    
Some studies suggest that people living with chronic illness, including inflammatory bowel disease (IBD), are at increased risk for anxiety and depression compared to the general population. “As is the case with most chronic illnesses, there is a higher rate of anxiety and depressive disorders in IBD than in the population at large” (Graff, Walker & Bernstein, 2009), particularly during periods of active disease (Nahon et al., 2012). In IBD “the rate of anxiety and/or depression has been estimated at 29%–35% during periods of remission and as high as 80% for anxiety and 60% for depression during relapses” (Nahon et al., 2012). However, “some studies have reported higher rates of psychiatric disorders in IBD compared with other chronic illnesses or healthy controls” (Graff et al., 2009). Alternatively, other studies find increased psychological distress only when IBD is active, and in periods of remission the rates of psychological distress are similar to the general population (Nahon et al., 2012).

When my disease is at its worst, I spend much of my day running to the toilet. It is like suffering from unremitting gastroenteritis. My appetite wanes because eating causes pain and digestive upset, and I suffer from low grade fevers. Fatigue resulting from lack of proper nourishment, and from the disease process itself, as well as anemia from a bleeding digestive tract, negatively impact on quality of life. Naturally this experience creates anxiety and depression.

My IBD also limits my social interactions as I become wary of leaving the house if I won’t have easy access to toilets on the way or at my destination. It is difficult to miss out on family events and on socialising with friends. At times I have felt alone with my illness and occasionally misunderstood about my level of commitment to social events, when in fact I was anxious about saying yes, because of the uncertainty of not knowing how I would be on a certain day. This has partly been the result of not always feeling comfortable about discussing my symptoms. After all, the symptoms of IBD do not make for socially acceptable dinner table conversation. The unpredictability of IBD, not knowing how I will be from one day to the next, causes stress and anxiety. I like to think of myself as a reliable and conscientious person and IBD challenges that self-concept.

I have written in the past of my journey through agoraphobia, and with the addition of Crohn’s disease, life has at times felt very difficult indeed. Thankfully I have a small group of family and friends who do not cringe from the reality of my illness and my experiences. My online IBD support group has been invaluable. In recent years, I have become more open about discussing my IBD with others, because I believe that through honesty and openness awareness is raised, and this may improve the chances of people with IBD to get the understanding and support they may need. It is pleasing to see that anxiety disorders and depression are more freely discussed these days. It is time for the same openness about IBD.

I have experienced many emotional reactions to having a chronic illness. Anxiety about what the future holds,  and worries that the disease may worsen. Frustration and depression about recurring flare-ups, embarrassment about symptoms, feeling alone and misunderstood. Every person’s experience of IBD is unique in terms of their emotional reactions, symptoms, and level of disability. There is no doubt that having IBD has been a major contributing factor in keeping my anxiety issues going.

Perhaps the biggest lesson for me and one which I have yet to fully master is living in the moment.  Acceptance of what is, in this moment, is important, and this is something I am still challenged by, though getting better at achieving. In the early years of my diagnosis I fought against accepting the idea that I would always have IBD. In one sense this was useful as it motivated me to try to find solutions. In another sense though, this denial did not assist me in achieving peace of mind and physical healing. Practising good self-care, emotionally and physically is something I am also getting better at, as is asking for more help from others. Practising meditation is also hugely important in improving my quality of life.

I now accept that I will always have IBD. Everyone has at least one challenge or struggle that they strive to overcome. I am no different. Crohn’s disease has taught me a lot about myself, about others and life. In Greek  mythology the character of Chiron, known as the wounded healer, suffered an eternal incurable wound. He failed to heal his wound, but in his search for a cure for himself, he healed many others. His eternal wound was his strength. A herbalist many years ago told me this story and encouraged me to reflect on it. My Crohn’s disease is a painful incurable wound, but it holds within it many gifts, such as compassion, insight and learning, wisdom and strength. It has both wounded and healed me and it will continue to do so. Our wounds and our healing are inextricably intertwined. This is how it is.


© Voula, 2014


Resources and information:

Websites:

www.crohnsandcolitis.com.au
www.ibdsupport.org.au


Books:

Amy B. Trachter. (2001). Coping with Crohn’s disease: Manage your physical symptoms and overcome the emotional challenges. Oakland, CA: New Harbinger Publications.


References:

Graff, L. A., Walker, J. R. and Bernstein, C. N. (2009), Depression and anxiety in inflammatory bowel disease:  A review of comorbidity and management. Inflamm Bowel Dis, 15: 1105–1118. doi: 10.1002/ibd.20873

Graff LA, Walker JR, Clara I, et al. Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. Am J Gastroenterol. 2009; 104: 2959–2969.

Nahon, S., Lahmek, P., Durance, C., Olympie, A., Lesgourgues, B., Colombel, J.F. and Gendre, J.P. (2012), Risk factors of anxiety and depression in inflammatory bowel disease. Inflamm Bowel Dis, 18: 2086–2091. doi: 10.1002/ibd.22888


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