1. Psychological aspects of bowel care By courtesy of Christine Norton PhD MA RN Nurse Consultant (Bowel Control) & Professor of Gastrointestinal Nursing St Mark’s Hospital & Kings College London, United Kingdom

3. Ms CR 32 years old, severe diarrhoea (Crohn’s) Out shopping with 5 year old daughter Urgency, could not hold on, accident No public toilet Unhelpful assistant Eventually used staff toilet How to cope? How to explain to daughter? “I want the floor to open and swallow me”

4. Werner-Beland, 1980 Nurse with SCI "Do you know what it feels like to lose control over one of the first functions over which one gains mastery in life? …. The very act of messing the sheets because of involuntary bowel activity, or, its reverse of having to have one enema after another to be rid of the stuff was almost more than I could cope with. Nurses would say things like, "I don't know why you are so upset. It's just an enema." I wanted to scream: I have crapped on my own for 36 years! You just don't understand! I am dead!“.

5. Cavet, 1998 People don’t understand Detailed study of people's experiences of living with faecal incontinence Powerful social rules associated with this area of life meant that families (of teenagers with faecal incontinence) faced public distaste, embarrassment, ridicule, general ignorance and very limited opportunities for discussion Negative effect of this social climate, compounded by the invisibility of the condition and the pressures on all young people to conform to very narrow stereotypes of bodily perfection.

6. Effects of poor control Restricted world, boundaries constrained by toilets, need to conceal “Living on a leash” Keep control by staying close to safety Envy of other’s freedom Major constraint on quality of life

7. Quality of life & bowel problems Life often revolves around toilets First concern when go anywhere new Horror of queues Avoid places and activities in case no toilet available “Chained to the toilet” (Chelvanayagam & Norton 2000)

8. Normal bowel control Complex learned voluntary skills, such as languages and driving, become “incorporated” once learned: inaccessible to conscious effort (Leder, 1990) Know “how” but cannot access individual components. Body harmoniously “understands” without conscious effort (Merleau-Ponty, 1962) Bowel control is voluntary, but subconscious

9. Reaction to excreta Innate or learned aversion? Smell linked to “lower” animal functions Can learn to repress disgust (nurses, sewerage workers), Context-specific, arbitrary features determine response? (OK at work) Cope with own infants Differentiate biological disease / atypical social functioning (which attracts blame) (Turner 1984)

10. Bladder & bowel control One of first socialisations in childhood Incontinence is naughty & socially unacceptable - embarrassment Elimination used as an expression of hostility & aggression, verbally & physically Infant learns that witholding or performing can produce a reaction (Loudon, 1977) All connotations of bowels negative

11. Loss of control In dysfunction: loss of organic silence – become aware of body functioning Conscious effort interferes with “autopilot” functioning Cycle of anxiety and hypersensitivity Difficult to regain control as it was learned in pre-conscious memory era Difficult to communicate and “teach”

12. Toilets are not available in many places Anxiety can trigger urgency Vicious circle develops: urge  panic  urgency  more panic  incontinence  panic more next time