Chronic Illness and the Life Course: the case of
Ulcerative Colitis
Professor Mike Kelly
Health Development Agency and the London School of Hygiene
and Tropical Medicine
Ulcerative Colitis
• Disease of the lining layer of the gut
• Chronic unpredictable diarrhoea
• Passage of blood and mucous
• Haemorrhage
• Development of cancer
Treatment
• Sulphasalazine
• Steroids
• Surgery
Epidemiology
• Young to early adulthood
• More common in females
• Prevalence 100 per 100,000
• Incidence 5-10 per 100,000
• Family connection 10% cases
Subjects
• Had all had total colectomy and ileostomy for ulcerative colitis
Sample
• Medical and surgical outpatient clinics
• Ileostomy association
• Volunteers
• Snowball sample
Methods
• Fifty in-depth interviews
• tape recorded
• manual transcription
• identification of key themes
• intellectual craftsmanship
The impact of serious illness
Primary social attachments
• Family
• Friends
• Work
The start of the trouble
• initial uncertainty
• “I must do something about this”
• symptom escalation
• an acute episode
• “you really are ill”
Diagnosis
• X rays and barium enemas
• colonoscopy
• resistance
• acceptance
Living with chronic disease
• variable symptoms
• pain and uncertainty
• loss of control
• diet
• relationships
Fighting back
Carrying on regardless
Making sense of it all
• Trying to understand cause
• hope of recovery
• extreme ill health
• risks of cancer
Consenting to surgery
The immediate impact of surgery
• Pain• Fears• Dependency experiences• Relief• Grief
Becoming an ileostomist
• Disgust
• Management issues
• Fears
• Complications
• learning the skills
• Difficult micro hand skills
• Availability of help varies
• Incorporation of skills into lifestyle
• Can never be entirely forgotten about or ignored
Being different
• Incontinence
• Carrying faeces around
• Incorporation of oddities into self conception
• Minimalizing
• Resolutely carrying on as normal
• Doubts and worries remain
Information management
• Imperatives versus irrelevance
• Control over information flow
• Inability to control information
Relationships
• Irrelevance
• Paralysis
• Openness
• Anxiety
• The right to be taken seriously as a sexual partner
Complications and problems
• Medical and surgical
• Perineal wound
• Skin
• Blockages and dehydration
Types of coping• Technical
• Intrasubjective
• Interpersonal
• Intersubjective
Self
• A sense of who and what I am
Identity
• What other people believe me to be
Conclusion
• Situated self
• Substantial self
• situated identity
• substantial identity
