How are our patients doing?

1. How are our patients doing? Beverley Colton Member of the Ostomy Forum group

2. Denmark England Netherlands Japan Norway Poland Scotland Sweden Participating countries

3. Project timelines 2000-2006 • A History Taking Form was developed and tested • A pilot on the Follow-up Form and Observation Index was undertaken • The Follow-up Form, Observation Index and guidelines were revised, extended and retested

4. Revised Observation Index

5. Revised Observation Index

6. Guidelines for Sexuality observations • Guidelines for use • A. Is self-explanatory. • B. All patients may experience pain on intercourse following major abdominal surgery. • Low pelvic surgery and/or Removal of rectum: • Male patients - retention of urine, inability to fully control their bladder function and urinary incontinence are all signs that nerve damage may have occurred at surgery.Erectile dysfunction and ejaculatory problems may be temporary or permanent. Urinary incontinence may have a severe impact on sexuality • Female patients - Surgery may alter the position of the vagina.  Nerve damage may cause vaginal dryness and altered sensation.  Resection of the posterior vaginal wall will also cause significant changes. Urinary incontinence may have a severe impact on sexuality • Removal of the bladder • Male patients - There may be no penile sensation or erectile function following excision of the bladder. • Female patients - there may be altered sensation in genitals. • C.The stoma care nurse must discuss possible sexual and urinary implications pre-operatively, giving short explanations. She must follow this up post-operatively, ensuring that the patient is given opportunities to ask questions and discuss their fears. The patient may wish the stoma care nurse to talk with their partner, either with or without the patient being present.

7. Revised Follow-up form

8. Revised Follow-up form

9. Revised Follow-up form

10. Revised Follow-up form

11. Methods of investigation • Standardised Observation index • Follow-up form • Medical outcome study (SF 36) • SAS Version 9.1.2. • A minimum of 10 consecutive patients • Monitored for a maximum of 1 year

12. MOS Medical Outcomes: health and general well being

13. Commitment

14. Language and Culture

17. Colostomy Social Assessment: progression to ‘normal’ status Normal = normal for patient based on HTF

18. Colostomy Sexual Assessment: progression to ‘normal’ status Normal = normal for patient based on HTF

19. Ileostomy Psychological Assessment: progression to ‘normal’ status Normal = normal for patient based on HTF

20. Psychological Issues and Time from Surgery

21. A stoma means a change of body image

22. Sexuality

23. Pre and post-op sexual intimacy

24. Associations of sexual intimacy

25. History • Aug 1978 constipated, rectal atresia,recto/vaginalfistula.>Rectosigmoidectomy + colostomy • Jan 1978 Colostomy closed • June 1986 Repeat Duhamel for faecal incontinence : London • Oct 1986 Psychiatric help • Jan 1987 Formation of colostomy and taught to irrigate : Bristol • 1993/4 8 month in patient stay at psychiatric unit • June 1997 Gracillis procedure :London • Aug 1997 Colostomy closed • Sept 1997 ACE procedure • Oct 1997 Stricture between ACE and rectum Formation Loop Ileostomy • July 1998 Ileostomy > Colostomy. ACE and stimulator removed distal bowel oversewn • July 2001 Cholecystectomy+ division of adhesions : Bristol • Jan 2005 Colostomy refashioned • Sept 2006 Colostomy refashioned

26. Listen – and you will make a difference • Use of a History Taking Form, standardised Follow-up form and Observation index. • Review of input and support at 3 months. • Development of communication, • counselling and listening skills.