The Emotional Impact of IBD. Chelsea Sherrington, Psy.D.

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1 The Emotional Impact of IBD Chelsea Sherrington, Psy.D.

2 Who is this talk for? Patients Caregivers, friends, and loved ones Professionals Advocates in the fight for living well with IBD

3 Who am I? (aka: What the heck do I know?) Professional experience Clinical and health psychologist Areas of focus and experience Chronic pain, cancer, HIV, pelvic and bowel disease, grief and bereavement, peripartum mood disorders, neonatal loss Personal experience A caregiver of 14 years to my wonderful husband, Alex (severe, active Crohn s disease, originally diagnosed as Ulcerative Colitis) What it means to be a caregiver We re in this together Note: Being a care-giver does NOT mean never being a care-receiver. Mutual support is important for long-term success of relationships.

4 Stress and IBD IBD is stressful in a whole host of ways Loss of control Fatigue Unpredictability of disease Pain Urgency Fear of relapse Embarrassment / shame / stigma Social withdrawal Spiritual questioning Loss of independence Time away from work / school Impact on body image and sexual health Medication side effects

5 Did stress cause my IBD? NO! Why is this myth still present? Historical belief that IBD had a psychogenic origin In the1930s, IBD was considered a psychosomatic illness by gastroenterologists and psychiatrists, and in the 1950s, IBD was linked to certain personality traits These theories have not been supported by research Misconception about similarities with IBS, which has more clear links to psychological and emotional factors Current research There is no strong evidence that supports the claim that stress or stressors can cause or initiate IBD

6 Can stress make my IBD worse? YES Tension, depression, and anxiety can modify how patients experiences IBD, but psychological factors do not cause either UC or CD Stress appears to have an impact on inflammation, mediated by changes in hypothalamic-pituitary-adrenal function, alterations of bacterial-mucosal floral interactions, activation of mucosal mast cells, and peripheral release of corticotrophin releasing factor Stress also plays a role in gut motility and fluid secretion Stress can also make it more difficult to cope with the challenges of symptoms and to engage effectively in treatment Ex: Anxiety and depression negatively impact sleep, energy and motivation, which in turn negatively impact recovery, efforts at prevention, and adherence to recommendations

7 Is it all in my head? NO! To be clear, though stress appears to have an impact on the course of IBD, flares and progression of disease are be triggered by a variety of factors (biological, environmental, chemical) Let go of the blame game! Your disease is not your fault Stress is only one piece of the puzzle

8 Can IBD impact my mental health? YES The unpredictability, uncertainty, and chronic course of the disease can impact psychological and interpersonal functioning During remission Anxiety and/or depression as high as 29-35% During relapse Anxiety as high as 80% Depression as high as 60% In comparison with other autoimmune diseases (rheumatoid arthritis), patients with IBD endorse a greater need for psychological interventions due to greater psychosocial restrictions and issues around stigma and shame

9 The Invisible Disease

10 The Invisible Disease

11 Will I always feel this way? NO! When you are in the middle of emotional suffering, it can feel like things will never get better. However, like physical flares, feelings of anxiety and depression may come and go along with changes in the disease and in the rest of your life. Emotional suffering, in the face of adversity, is NOT pathological. If you are distressed, in the face of a distressing event, there is nothing wrong with you. Recognizing that distress is a normal part of living with Crohn s and Colitis can help de-stigmatize emotional suffering, both for yourself and for those around you.

12 The Mind-Body Connection An example: The Fight or Flight Response

13 The Mind-Body Connection An example: The Fight or Flight Response

14 An Introduction to Psychoneuroimmunology Psychoneuroimmunology (PNI) is the study of the interaction between psychological processes and the nervous and immune systems of the human body Main focus of PNI: Interactions between the nervous and immune systems The relationships between mental processes and physical health PNI seeks to explain: The physiological functioning of the neuroimmune system in health and disease Disorders of the neuroimmune system (autoimmune diseases; hypersensitivities; immune deficiency) The physical, chemical and physiological characteristics of the components of the neuroimmune system

15 Psychoneuroimmunology in IBD ENS enteric nervous system CRF corticotrophin releasing factor SP substance P IL - interleukin From: Mawdsley & Rampton (2005)

16 Is it all bad?

17 The good stuff! Just as there is post-traumatic stress, so too is there room for post-traumatic growth Some positives that can come out of having IBD are: Resilience Determination Increased focus and appreciation of a new interest (such as art, academics, music, etc) Wisdom Perspective Empathy for others Improved sense of humour Better self-awareness and self-care Increased focus on truly meaningful relationships Better stress-management Increased sense of community, upon finding good supports

18 How to Cope

19 Self Care Seek (effective) social support Set boundaries Recognize the importance of me time Pace (both emotionally and physically) Laugh! Make use of humour Engage in physical activity Eat a balanced diet Get sufficient rest and good sleep Be matter-of-fact about your needs and plan ahead Make time for relaxation

20 Self-care is NOT Self-ish I have come to believe that caring for myself is not self indulgent. Caring for myself is an act of survival. - Audre Laude

21 When to seek professional help Feeling angry, frustrated, sad, and worried are normal in the course of a chronic illness Seek help when these painful feelings: Are pervasive (they persist most of the day, on most days) Last more than two weeks, or past the point of a situation stressor Begin to interfere with your functioning in work/school, your relationships, your family life, and your self-concept

22 How can a professional help? Relief from psychological distress Has a positive impact on quality of life Has a potential impact on course of IBD (mixed results in the current research) Types of mental health professionals Psychiatrists Experts in medical management of mental health; May provide psychotherapy Psychologists Experts in understanding, preventing, and treating mental health disorders; Primary modality is psychotherapy Health Psychologists Understand the specific impacts of medical illness on mental health Social workers Experts in the social and systemic factors which influence a person s wellbeing; Excellent at facilitating pragmatic and essential services; May provide psychotherapy

23 The Right Fit In addition to possessing the standard skills of the profession, a mental health professional will be most helpful if they are: Familiar with both the normal and erratic course of IBD Aware of the complications common in IBD Familiar with the treatments used for IBD Best practice is to have the primary care physician and the psychotherapist communicate with one another, to cooperate in in efforts to support you Note: You may be asked to sign a release of information to facilitate this communication

24 How to find a therapist Speak with your GI, surgeon, or primary care physician Ask if there is a psychosocial support service associated with your hospital College of Psychologists of Ontario Feel free to contact me! 700 Bay Street, Suite 2200 Telephone: ext 223 Reception: chelsea@healthpsychologyclinic.ca Website:

25 Wonderful Websites The Great Bowel Movement United Colon Vlog Crohn s and Me Girls with Guts Inflamed and Untamed

26 Great Books Coping with Crohn s Disease: Manage your physical symptoms and overcome the emotional challenges By: Amy B. Trachter, Psy.D., Ph.D. Check Your Pride at the Door By: Darryl D. Helems,Ph.D.

27 Useful Research Articles Mawdsley, J. E. & Rampton, D. S. (2005). Psychological Stress in IBD: New insights into pathologenic and therapeutic implications. Gut, 54, Mackner, L. M., Clough-Paabo, E., Pajer, K., Lourie, A., Crandall, W. V. (2011). Psychoneuroimmunologic factors in inflammatory bowel disease. Inflammatory Bowel Diseases, 17(3), Miehsler, W., Weichselberger, M., Öfferlbauer-Ernst, A., Dejaco, C., Reinisch, W., Vogelsang, H., et al. (2008). Which patients with IBD need psychological interventions? A controlled study. Inflammatory Bowel Diseases, 14(9),

28 Thank you for your attention! Questions?

29 Chelsea Sherrington, Psy.D. 700 Bay Street, Suite 2200 Telephone: ext 223 Reception: Website:

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