Information Day 2014

10:00  Coffee on arrival

10:30  Welcome & domestics

10: 40  Introduction –  Bruce George, Kangaroo Club Chairman & Colorectal Surgeon Oxford University Hospitals (OUH) NHS Trust

Diagnosis of Ulcerative Colitis (UC) and Crohn’s Disease (CD)

A major problem remains the difficulty of differentiating the diagnoses of UC and CD. UC affects only the large bowel and only the mucosa, whereas CD affects the whole gastrointestinal tract and all layers of it. The fact that CD can mimic UC presents challenges for surgeons during pre-pouch work-up.

The Cleveland Clinic (USA) is one of the biggest centres in the world for pouches, having done over 3,000. A recent survey found that 204 pouches had been made for CD patients: of these 20 were done intentionally (where there was no evidence of peri-anal or small bowel CD), 97 were diagnosed immediately on colon pathology and 87 were diagnosed after a delay. There remains, therefore, a need to minimise the surprise finding of CD in pouch patients. One way forward is, if in doubt, to remove the colon first and then do a three-stage operation (which is not the practice in Cleveland).

Poor Pouch Function

For pouchitis, Ciprofloxacin is the best antibiotic. The probiotic VSL#3 would seem to have long term benefits (better than placebo), especially after antibiotics.

It must be noted, however, that there are other causes of poor pouch function than pouchitis – and full assessment of pouch function is therefore needed. (Practitioners need to continue to look inside, above, and below, as well as outside the box!) Treatment must be dependent upon identification of the cause of poor pouch function.

A study made by the University Hospital Leuven (Belgium), which is one of the biggest centres, found that the anti-inflammatory, anti-TNF drugs, infliximab (IFX) and adalimumab (ADA) led to improvement in 88% of patients, whether of UC or CD.

There are also surgical options for failing pouches; indefinite diversion (with pouch excision or with pouch left in-situ), pouch reconstruction (which is rare, because problematic), or the formation of a Koch Pouch.

The Future

Significant advances are being made in keyhole surgery, which causes far less scarring and fewer adhesions. This could increasingly be robotic assisted, a technique already being used at Aarhus University Hospital (Denmark).

The full presentation can be downloaded by clicking here

11:20  A Discussion about Diet – Karen Jackson, Dietitian RD, BSc Hons, Sports Nutrition Specialist PG Cert, OUH NHS Trust

The Ileo-Anal Pouch and Diet

Introduction

Function of the colon:

• absorption of electrolytes e.g. salt

• re-absorption of water (although 90% of this is absorbed in the ileum)

• formation of stool

• fermentation

• synthesis of vitamins

 Compensation for these functional losses in all post-colectomy patients is complex. The verdict must be that experiment is necessary to determine individual tolerance – and this is especially the case with fruit and vegetables. Soluble fibre, found, for instance, in the soft flesh of a peach, helps the bowel to absorb water.

Dietary Recommendations

Protein: 1.5 ounces per day, as more is just excreted in urine.

Milk and dairy products: these provide the most abundant supply of the most ‘at risk’ nutrient, especially in CD, but they can also have an impact on pouch output, so it may be best to keep to small amounts.

Fluid Intake: 8-10 cups per day. High output leads to loss of water, salt and potassium. Tea and coffee can encourage dehydration, so should be limited to 4 cups per day.

Special Considerations

Particular thought should be given to the following:

• calcium

• vitamins and minerals

• hydration

• energy (calories) – either too much or too little, depending on the individual

Pouch Dysfunction

Dietary contributory factors could be:

• alcohol

• fat

• sorbitol

 Probiotics

There is no overall consensus on the efficacy of these. Some research has been based on small samples and of poor quality. There is some small evidence that high dose probiotics have led to patients with chronic pouchitis remaining in remission. They may be particularly useful after antibiotics, which wipe out all (good and bad) bugs. They may vary in efficacy. As ever, the need to experiment is paramount. Over-the-counter yoghurts etc are probably less efficacious: the question with these is, when the yoghurt gets to the supermarket, are the bacteria still alive?

Foods with Adverse Effects

Again, individual pouch owners report very different experiences, so experimentation is paramount. The following is a rough guide:

Foods which increase wind and odour:

• broccoli, cabbage

• onion, garlic

• beans

• spicy foods

• carbonated drinks, beer

• eggs

Foods which increase output:

• pulses and leafy vegetables

• high fibre foods

Conclusion

Individual experiences vary tremendously, so it is necessary to experiment. If there are particular problems, a formal assessment from a specialist dietician may be needed.

The full presentation can be downloaded by clicking here

12:00  AGM and Kangaroo Club Update

12:30  Lunch

13:20  Nurse-Led Clinics – Simon Turley, Colorectal Nursing OUH NHS Trust

The clinics were established in 2003 by Angie Perrin and were the first of their kind in the UK. Slots are 30 minutes each, so there is plenty of time for investigation and discussion. If a patient has not been seen for 3 years, or comes from outside, a GP referral back into the system is required.

Further information is now available in electronic form.

The following blood tests are recommended:

• FBC

• U&Es

• LFTs

• Vit B12

• Ferritin

The full presentation can be downloaded by clicking here

13:30  The Koch Pouch – Fran Woodhouse, Colorectal Nursing OUH NHS Trust

The Continent Ileostomy, or Koch Pouch was first introduced in 1969. It was largely superseded by the Ileo-Anal Pouch, introduced by AG Parks and RT Nicholls in 1978. The K pouch started being performed again in 2007 at the Oxford Radcliffe Hospitals NHS Trust due to patient demand. Professor Neil Mortensen is currently the primary practitioner.

 The Koch Pouch can be an option after failure of an Ileo-Anal Pouch – but it is not without problems of its own. The biggest difficulty is of valve slippage, which can lead to the need for an ileostomy bag. This is most common in the first 3 months after the operation and can require a further operation to correct it.

The full presentation can be downloaded by clicking here

14:00  Pouch Function and Dysfunction – Dr Simon Travis DPhil FRCP, Gastroenterologist OUH NHS Trust and Linacre College

Normal Pouch Function

This can be defined as:

• 6-8 bowel movements per 24 hours

• 1-2 per night

• loose or semi-formed stools

• able to defer for 1 hour

• occasional seepage at night

• function stabilises 1 year after surgery

Pouchitis

Pouchitis affects 30% of patients.

Risk factors include:

• extensive UC

• Primary Sclerosing Cholangitis (PSC) – a bile duct disorder

• being a non-smoker

• auto-immune cytology of perinuclear anti-neutrophil cytoplasmic antibodies (pANCA)

Pouchitis would appear to be driven by bacteria.

Diagnosis

There are 3 ways of diagnosing pouchitis; observation of symptoms, endoscopy or histology. The Cleveland Clinic (USA) only followed up patients by telephone and therefore could only use the first method. Consequently they ‘found’ a much higher occurrence of pouchitis in their patients.

There has been a miserably small amount of real research. One survey, for instance, numbered only 20 patients. The probiotic VSL#3, which contains 8 different bacteria, has been found to be effective by Claudio De Simone, at the University of Bologna, but unfortunately it would seem to work better in Bologna than it does in other parts of the world.

The solution is most likely to be complex.

Caveat – Centres of Excellence

78% of hospitals in the UK now offer pouch surgery: the median number of procedures in a year they do is 1. The back-up of an interdisciplinary team is necessary.

 Pouches and Pregnancy

The problem of sphincter weakness is the reason why pregnant women with pouchitis or pregnant women with UC who are thinking of pouch surgery are recommended by the Oxford Radcliffe Hospitals NHS Trust to have an elective caesarian section. The view is that it is imperative to protect the sphincter muscle. It must be conceded however that many people with pouches have normal births elsewhere.

 Other Diseases

The difficulty of differentiating between UC and CD remains. It could be said that there is nothing like a pouch for bringing out CD in patients.

Cancer, however, is stunningly rare in pouchees. Not a single example of cancer in a pouch has been found where there were no early signs of cancer in the colectomy specimen.

14:40  Break

14:45  Discussion Groups:

• Pouchitis

• Sport and an Active Life

• Longevity –pouches over time

15:15  Questions and Answers – Simon Turley & Fran Woodhouse Colorectal Nursing OUH NHS Trust

Q: What is the cause of itchy skin?

A: This is probably the result of lack of absorption of fatty acids. The advice is to put olive oil on the skin.

Q: Is the medical world yet on common ground on the cause of UC?

A: Oh yes –everyone agrees that we don’t know what it is! It is probably 40% genetic – and attributable to bugs in the gut. There is probably not a single cause. Stress may be a factor: stress could lead to colitis, which could lead to more stress, which could lead to ongoing colitis.

Q: Is there any new information on the longevity of pouches?

A: Questions are ongoing. Keep asking for second opinions. Keep in touch with the Kangaroo Club.

Q: What Barrier creams/wipes are available?

A: Barrier creams/wipes available are as follows:

• Coloplast comfeel

• Drapolene (baby cream) – over the counter

• Bepanthen (baby cream)- over the counter

• Vaseline

• Prescription creams- Clinimed LBF/ Pelican protect

• Barrier wipes- Ostomart Ostoguard/ Salts Periprep/Opus Skin safe

Q: What is the correct positioning to enable the most effective emptying of a pouch?

A: The best things to do to enable effective emptying of your pouch are:

• Relax

• Sit with a slight pelvic tilt

• Elevate your feet on a pile of magazines or equivalent- the Oxford English Dictionary!

Q: Does going to the gym especially for stomach exercises help reduce leakage?

A: The best way to reduce leakage is through:

• male and female pelvic floor exercises-

• Maintaining a “strong abominal box”

• Keeping a healthy BMI

15:45  End

There was plenty of opportunity to meet and chat with (other) pouch owners and their partners during the day.

Next Year