Information Day 2010

10: 00 Coffee on arrival

10:30 Welcome & Domestics

10:40 Introduction from Bruce George, Kangaroo Club President and Colorectal Surgeon JR hospital

Restorative Proctocolectomy

Decision Making – Indication for surgery in UC

  • Acute attack
  • Failure of medical therapy
  • Risk of malignancy
  • Growth retardation in Childhood

Selection and consent (having a pouch avoids a permanent end ileostomy)

  • Certainty of diagnosis – ? indeterminate / Crohns
  • Steriods
  • Sphincters
  • Co-morbidity
  • PSC

40% do well, 40% manage with diet, 20% have problems Indeterminate colitis patients do less well.

If taking steroids leaking is greater.

Long term outlook for pouch function does not change greatly over a 10 year period.

Oxford data shows that of 400 patients having pouch surgery, 30 pouches have been removed due to poor bowel function.

Common problems are Pouchitis, Strictures, and Cuffitis.

Persistent poor function requires investigations. (Problems can occur outside, above and below the pouch). Investigations include pouchoscopy, CT/MRI and ultrasounds.

Future of Pouch Surgery

Most common method is to remove the colon by keyhole surgery, followed by keyhole pouch surgery, but requiring a small cut to be made.

Pouch function can deteriorate over time and patients can be offered repeat pouch surgery, but the outcome is not as good as the initial pouch surgery.

Kock Pouches (an alternative to an end ileostomy) are now being formed by creating a reservoir behind the stoma whereby the patient does not wear a bag but catheterizes the stoma every 3 or 4 hours and a small stoma cap may be used to contain mucous leakage. Patients can be offered this surgery following a failed pouch. This is a major, technical operation requiring repeat surgery and has a 60% success rate.

A video was shown of laparoscopic pouch surgery.

11:15 Living with a Pouch; the Patient’s Perspective – Angie Perrin, Senior Nurse, Colorectal Team, JT hospital

Angie completed her masters in “A Patient’s Perspective – Life with an Ileo-anal Pouch”

The Hypothesis for her research

  • What is the individual’s perception of their own quality of life following ileo-anal pouch formation?

“The ileo-anal pouch procedure is now viewed as the operation of choice for those individuals with a diagnosis of Ulcerative Colitis and Familial Adenomatous Polyposis.” (Fazio 1998, Seidel, 2000)

Background/current practice

Ileo-anal pouch developments

  • Shape – S, W or J
  • Staged approach
  • Ileostomy v No ileostomy
  • Mucosectomy v No mucosectomy
  • Hand-sewn or stapled

Continued developments – Nurse-led ileo-anal pouch clinics

  • Referral guidelines
  • Advanced training of CNS
  • Designated clinic space
  • Telephone follow-up
  • MDT liaison and referral

Basis of research

Common concerns

  • Peri-anal skin soreness
  • Ineffective emptying
  • Peri-anal itching
  • Dietary concerns
  • Slight incontinence
  • Frequency
  • General anxieties
  • Sexual function

Research process

  • Qualitative research study
  • Phenomenological approach
  • Proposed research considered at National Ia 2007
  • Recruited volunteers
  • Selected randomly, 6 participants interviewed over Summer 2007
  • 3 male, 3 female subjects
  • Interviews transcribed into narratives which were then analysed

Angie’s Findings

Concurrent Themes

  • Information prescription/Lack of support
  • Seeking control
  • Diet
  • Fertility and Fecundity
  • Role and Relationships
  • Employment

Information Prescription

  • Support and lack of support from health care professionals
  • Lack of knowledge and understanding from health care professionals and others Eg. Insurance companies,
  • Advocacy for fellow sufferers and “pouchies”
  • Value of support groups, chat rooms etc
  • Lack of resources, inadequate literature

Seeking Control

  • Making the decision – many people wanted control of what was happening

“ I got to the point when I said look I’ve had enough I want to have the operation……I said look you have got to get someone to do something about this, I was up 22-24 times an hour. I was soiling the bed. I had no control”

  • High motivation, but no guarantees
  • Dietary modifications


  • 50% individuals modify their diet
  • Not adequately discussed by Health Care Professionals
  • Attitudes towards food; eating what you want or to reduce pouch issues

“I eat late and do not follow any rules, I don’t do any of those things your supposed to do. I do what everyone else is doing. I have a drink, life’s too short!!”

  • Lack of literature regarding diet

12:00 Ferritin Research Study – Stephen Tattersall, Senior Gastroenterology Registrar, JR hospital

Iron and Pouches

  1. Most of the iron in the body is in red blood cells as haemoglobin.
  2. There are stores of iron in bone marrow, liver and spleen.
  3. We absorb iron from our food – in meat, fish and poultry.
  4. In the western diet there is more iron in food than is necessary.

At the JR one third of pouch patients do not have enough haemoglobin in their blood and 22% lack iron.

Iron deficiency is caused by blood loss from the gut.

Iron deficiency is usually treated with tablets (which may have side effects and is slow to act). Iron injections are also available which can be given in a larger does and is rapidly absorbed with few side effects and is not likely to cause inflammation.

The JR are now offering iron injections to patients and are routinely looking for patients lacking in iron who may be asked to participate in the study.

All patients who come to pouch clinic or have telephone pouch follow ups are asked to get their bloods taken and a low iron count will be picked up and you will be asked to take part in the study. The study will commence shortly for 6 months.

12.30 Lunch

An opportunity to meet and chat with other pouch owners and their partners and talk to representatives from a number of pharmaceutical companies and the NACC & IA

13:45 Kangaroo Club AGM

14:15 Exercises for the Pouch – Jane Newman, Senior Physiotherapist, John Radcliffe Hospital

The digestive system is a muscle system working its way through the body.

To teach exercises members were asked to think of the middle of the body as a box. The pelvic floor muscles are made up of 2 layers and are the bottom of the box. The deep core abdominal muscles at the front and back of the body are the sides and the diaphragm is at the top.

To strengthen the core abdominal muscles lift the legs either side standing up or on all fours keeping the trunk still. (A superman action on all fours) This will help build up tone.

Support for the Pouch comes from the tone of your muscles. These should be strengthened little and often and do not need to be strenuous.

An exercise leaflet was made available for both men and women.

14:45 Questions & Answers with the Colorectal Nurse team

15:30 Raffle and Finish

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