Living with a Stoma-A Psychological Approach

1. Living with a Stoma-A Psychological Approach Dr Julian Stern Consultant Psychiatrist in Psychotherapy St. Mark’s Hospital, Harrow, UK

2. Living with a Stoma - Structure of presentation • Introduction • 2 Cases-Mr T and Gemma • Who does well psychologically ? • Internal and external support • Principles of management, and support for Colorectal and Stoma Nurses

3. Living with a Stoma - Introduction • What does it mean to have a stoma ? • Life-saving surgery or mistake? • Lifelong illness or recent ? • Medical and nursing support • Emotional support • Stage in life-cycle

4. Continence • Achievement of continence crucial developmental step-praised, rewarded • “Incontinence”-a word with very negative connotations. Which adult is incontinent ? Only the Elderly, Demented or Psychiatrically ill • Faeces is kept private in our 21st Century society. The stoma threatens this privacy • Faeces is also mostly kept separate from sex-FI and a stoma threaten this too

5. Case 1: Mr T. • Man , mid- 60’s, referred by surgical team • Failed graciloplasty as the “muscle became too tight” and increased perianal pain • Now - permanent colostomy • Enormous trouble accepting it, changes bag at all times. “It smells”

6. Referral (continued) • Refuses to go out, has become a recluse • Moved to a separate bedroom, no sexual contact with wife • Spends his days in the greenhouse and when he goes into the bathroom, locks the door at all times • “Refuses to see you or Stoma Nurse Specialist”

7. Re-referred a year later • Sees a new surgeon and re-referred to me • “He now lives as a total recluse” • Is the diagnosis ‘stoma phobia’ ? • On antidepressants for 18 months, and for the first time, seems quite enthused about psychiatric help

8. Psychotherapy assessment • Arrived on time • Been depressed for the past 18 months • On sertraline (SSRI) which “doesn’t really help”

9. Assessment (continued) • Anal pain since 1980 • 4 operations at another hospital for abscesses and eventually fistula formation • 1990: referred to St Mark’s with fistula and incontinence • Temporary colostomy, then Graciloplasty • Finally, permanent colostomy 18 months ago

10. Graciloplasty

11. Colostomy • Eventually permanent colostomy 18 months ago

12. Assessment (continued) • Anal discharge stinks, leaks -disgusting. • Plugs it with swabs and a plug • Stoma is ugly and disgusting-“If I had a knife I would cut it off” • “If people deny that it smells, they are lying” • “There must be something wrong with your nose”

13. Restrictions to life • Cannot swim with grandchildren, nor play with them lest they jump on his bag • In past- enjoyed caravanning, dancing, clubs • Now does not leave the house. Showers 4 times daily, new locks on the bathroom door • No sex with wife

14. Personal History • 4th of 5 children • Father strict but “a terrific man”-would occasionally belt patient. Died at 83 • Mother “lovely woman”-died at 53 • “No physical abuse” at home

15. Personal History (Continued) • School till 15, then worked in sausage factory where he met his wife to be-”a diamond” • Ended up as a carpenter, then running his own business • Since 1990 (age 45) on State benefits

16. Personal History (Continued) • Has been married (after a 4 month courtship) for 40 years • 5 children, 7 grandchildren-sees them all weekly • “No psychiatric history” • Temazepam 20mg nocte and Sertraline

17. Personal History (Continued) • Age 13-anally raped in isolated park near his home • Cried about it at the time, washed himself thoroughly when home • Never told parents -would have got belting

18. Mental State Examination • A tall sad man, clearly embarrassed, humiliated and depressed • If not for religion “I would have killed myself” • Voices inside his head –”Mary is a tart” • Cries daily. Poor sleep, no enjoyment, no appetite

19. Mental State (Continued) • Obsessional features regarding cleanliness-body, home. “I always leave home with polished shoes, a crease in my trousers and an ironed shirt” • Doctor : “I think you have an inner sense of disgust and contamination” • Mr T: “I just get on with life, and cope as I can”

20. Additional information • Seen in 1984 on a number of occasions by psychiatrists at the previous hospital • Anxiety, depression and insomnia • “Bed wetting till 14” • “Inadequate personality” • “Try him on anti-depressants”

21. Additional information • May 1984, at follow up-headaches, violent feelings towards his wife. Dx - ? Frontal tumour • August 1984-CT scan normal. “He needs to stop lazing around all day” • May 1985-Discontinues medication. Wants to remain on benefits. “I will see again in 6 months, but he should look for work because there is no real mental illness”

22. In psychiatric history • No mention of bowel/ anal problems • No history of abuse

23. In surgical history • No mention of abuse • Occasional mentions of his personality

24. Psychiatric follow up • DSH (deliberate self harm) • Religion • Relationship with me • Relationship with wife • Further revelations

25. Mr T’s attitude towards his stoma What does it represent ? What does his faeces mean to him ? Can he allow himself to get better ? Even if technically perfect, he will always have trouble with it !

26. Case 2: Gemma • 24 year old woman from Scotland • Congenital malformation-surgery as a neonate • Constant incontinence and excoriation as a child and teenager

27. Gemma • Eventually agrees to pouch formation in her 20’s but with preservation of continence • Surgery goes wrong-anastamotic breakdown, sepsis, ITU. • Hysterctomy at 24

28. Gemma • Now on HPN, high output stoma, suing surgeon • Describes her life as “Imprisonment” • Daily routine • Filled with sadness and much resentment • (Problems in dealing with someone currently involved in litigation)

29. Gemma • 2 Dreams-of being trapped • High rate of line infections-Why ? • Problematic stoma care-never can get the “Right size”

30. Gemma • Wish to punish the surgeon, even if it meant killing herself • (Do patients always want to get better-and what does it evoke in you if they don’t?)

31. Her attitude towards her stoma What does it represent ? Can she allow herself to get better ?

32. The Psychological Assessment of the patient with a stoma Confidential Setting and Respect for the ostomate Shame Guilt Manic denial Behaviours which worsen the situation ?

33. Stoma’s -Who does well ?1. Nature of illness • Nature of illness-life threatening ? • Acute v chronic-did they have any preparation? • Act of God v Act of Man

34. Stoma’s -Who does well ?2. Surgical issues • Ileostomy v colostomy • Technical issues • Spout, siting, adherence of bags

35. Stoma’s -Who does well ?3. Personality issues • Relationship to body, body fluids • Very conservative and prude ; “at peace” with body fluids-how comfortable with sexuality ? • Current relationship/marriage?

36. Stoma’s -Who does well ?4. Psychological issues • If generally well, will cope • If previous abuse or trauma-how does the stoma “fit in”?-further punishment; further confirmation of worthlessness.

37. Stoma’s -Who does well ?5. Internal and external support • Is there someone they can turn to ? • Internal support-does the patient have an internal sense of being cared for (mother, father) • What support is there from family/friends? • What support is there from the nurse/ team?

38. Stoma’s -Who does well ?6. Internal and external support • If the patient is well internally supported, he/she can often make good use of external support • Where little internal support , he/she is less able to use external support-either very suspicious, or so needy it drives carers away-leaving patient feeling again alone, abandoned, not looked after

39. Principles of management • Collaboration with physicians, surgeons, members of multidisciplinary team, G.P, psychiatry or psychology • Find out as much as possible about patient and background

40. Principles of management (2) • If needed, what options for psychological support are available ? • Are you able to refer? • And what is acceptable to the patient ?

41. Principles of management (3) • Specific psychotherapies-psychoanalytic, family, group, cognitive-behavioural therapy; hypnotherapy • Drug therapy-antidepressants, anxiolytics • Voluntary organisations Frequently it is You (Stoma care nurse specialists)

42. Principles of management (4)-questions for you in Budapest Despair, anger, marital difficulties, body image issues, sexual problems, suicidal patients Leaves you feeling – Desperate Depressed Upset Disgusted Hopeless Tearful Angry Wanting to resign

43. Principles of management (5)-questions for you in Budapest “Despair, anger, marital difficulties, body image issues, sexual problems, suicidal patients” The same feelings psychotherapists have to deal with. Yet as psychotherapists we have: Supervision to learn ways of dealing with feelings Often our own psychotherapy treatment What Do You Have?

44. Principles of management (6)-questions for you in Budapest Who are you expected to see, over what timescale? What skills are you encouraged to develop ? What support (supervision) do you get to help your psychological understanding of patients ? What are the risks to your mental health of getting very involved ? (or of trying to block it all out ?)

45. Principles of management (7)-questions for you in Budapest At St Mark’s Hospital:- Regular sessions with nurses to look at their own feelings in dealing with these patients External courses for visiting nurses Should there be regular psychological supervision as a weekly/monthly part of your job plans ?

46. References • Stern JM (2003) Review Article: psychiatry, psychotherapy and gastroenterology-bringing it all together. Alimentary Pharm Therapeutics. 17;175-184 • White C (1997) Living with a Stoma. Sheldon Press