1. 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

2. Ulcerative Colitis Disease of the lining layer of the gut Chronic unpredictable diarrhoea Passage of blood and mucous Haemorrhage Development of cancer

3. Treatment Sulphasalazine Steroids Surgery

4. Epidemiology Young to early adulthood More common in females Prevalence 100 per 100,000 Incidence 5-10 per 100,000 Family connection 10% cases

5. Subjects Had all had total colectomy and ileostomy for ulcerative colitis

6. Sample Medical and surgical outpatient clinics Ileostomy association Volunteers Snowball sample

7. Methods Fifty in-depth interviews tape recorded manual transcription identification of key themes intellectual craftsmanship

8. The impact of serious illness

9. Primary social attachments Family Friends Work

10. The start of the trouble initial uncertainty “I must do something about this” symptom escalation an acute episode “you really are ill”

11. Diagnosis X rays and barium enemas colonoscopy resistance acceptance

12. Living with chronic disease variable symptoms pain and uncertainty loss of control diet relationships

13. Fighting back

14. Carrying on regardless

15. Making sense of it all Trying to understand cause hope of recovery extreme ill health risks of cancer

16. Consenting to surgery

17. The immediate impact of surgery Pain Fears Dependency experiences Relief Grief

18. Becoming an ileostomist Disgust Management issues Fears Complications learning the skills

19. Difficult micro hand skills Availability of help varies Incorporation of skills into lifestyle Can never be entirely forgotten about or ignored

20. Being different Incontinence Carrying faeces around Incorporation of oddities into self conception Minimalizing Resolutely carrying on as normal Doubts and worries remain

21. Information management

22. Imperatives versus irrelevance Control over information flow Inability to control information

23. Relationships Irrelevance Paralysis Openness Anxiety

24. The right to be taken seriously as a sexual partner

25. Complications and problems Medical and surgical Perineal wound Skin Blockages and dehydration

26. Types of coping Technical Intrasubjective Interpersonal Intersubjective

27. Self A sense of who and what I am

28. Identity What other people believe me to be

29. Conclusion Situated self Substantial self situated identity substantial identity