Kangaroo Club Information Day Bruce George 7th October 2017

Should I have a Pouch? 25 year old woman What operation? UC since age 20 colectomy + ileostomy with retained rectal remnant age 24 troublesome proctitis and doesn’t like ileostomy What operation? Ileo-anal pouch Ileo-rectal anastomosis Defer surgery Proctectomy and permanent ileostomy

Forced choice question How long does X have to be to choose treatment B over treatment A? Diagnosed with terminal illness 2 treatments approved by NICE Treatment A: 50:50 chance of complete cure or death Treatment B: Gives X period of time in complete remission and then death

Nadine and Sam Montgomery

Montgomery vs Lanarkshire Health Board Replaces Bolam principle Dovetails with GMC guidelines about informed consent Individualised approach to informed consent Dr must discuss issues even if low risk which may be particularly important to that patient

Should I have a pouch? 25 year old woman What operation? UC since age 20 colectomy + ileostomy and retained rectal remnant age 24 Troublesome proctitis and doesn’t like ileostomy What operation? Ileo-anal pouch Ileo-rectal anastomosis Defer surgery Proctectomy and permanent ileostomy

What factors are important to this patient? 25 year old woman UC since age 20 colectomy + ileostomy and retained rectal remnant age 24 Troublesome proctitis and doesn’t like ileostomy What factors are important to this patient? Bowel function Sexual function and fecundity Morbidity of surgery/ returning to work Cancer risk/surveillance Body image

Body image is important Blake Beckford

Function BO x 5-7, night 53%, urgency 16% Failure rate 10-20%:

UK Ileoanal Pouch Report 2017 > 5000 patients (1980- today) Supplemented by SWORD (surgical workload outcome reporting database) Key findings: Length of stay 10 days 25% re-admission within 30 days 20% complication Gradual increase in laparoscopic procedures (33%) Concerns about low volume hospitals and surgeons Only 26 surgeons undertook >15 ops in 5 yrs 126 surgeons only 1 op 108 (of 126) hospitals less than 5/yr

Fertility Meta-analysis of 8 studies Pre-op UC: Post-pouch UC: Infertile 105 Fertile 423 = 19.9% “medical” infertility Post-pouch UC: Infertile 301 Fertile 300 = 50.1% “surgical” infertility Waljee et al Gut 2006

Lepisto et al BJS 2007 Questionnaire to 160 post pouch patients (and 160 post appendicectomy controls) 54 (39%) attempted to become pregnant post pouch 60 (46%) of controls Of pouch patients trying to become pregnant 36 of 54 (67%) succeeded naturally 49 (82%) of controls

Need for fertility investigations 13 of 18 infertile post-pouch patients underwent fertility investigations: Ultimately 8 conceived Overall cumulative pregnancy after 72 months, including after infertility treatment = 80% Lepisto et al 2007

How should we spin this? Infertility rates: x 2-3 fold increase 20% to 50% Waljee et al 2006 Eventual chance of becoming pregnant if trying 76-80% (91% in controls) Lepisto et al 2007

Ileo-rectal anastomosis in UC Initially described in 1950’s Fell into disrepute due to high cancer risk Recent resurgence of interest selected patients with: Mild proctitis No dysplasia No PSC Compliant with surveillance

Ileo-rectal anastomosis in UC (compared to pouch) Lower bowel frequency, better continence Similar urgency Less complicated procedure , faster return to normal activities No (or postponed) pelvic surgery Better preservation of fertility Need for surveillance/cancer risk

Deferred surgery Persisting ileostomy Persisting rectal remnant symptoms (10 year rule) No risk to fertility No change in sexual function/quality of life

Proctocolectomy and permanent ileostomy Negative impact on body image and sexual function Relatively straightforward surgery, return to normal activities Preservation of fertility

Summary 25 year old woman What operation? UC since age 20 colectomy + ileostomy and retained rectal remnant age 24 Troublesome proctitis and doesn’t like ileostomy What operation? Ileo-anal pouch Ileo-rectal anastomosis Defer surgery Proctectomy and permanent ileostomy

Decision making in Pouch Surgery Challenging Find out what matters most to the patient Need for multidisciplinary care Changing medico-legal landscape