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