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

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

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

6. 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. Guidelines for Sexuality observations

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

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

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

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 My spouse partner and I are sexually intimate I desire sexual intimacy Prior to ostomy surgery With 26 weeks post- operative Malesr=0.865r=0.521 Femalesr=0.791r=0.703

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.