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