Information Day 2015

10:00  Coffee on arrival

10:30  Welcome & domestics – Laura Dunn: Kangaroo Club Chairman

10:40   People, Places and Pouches - Professor Neil Mortensen: Colorectal Surgeon OUH NHS Trust, Professor of Colorectal Surgery University of Oxford Medical School, Fellow of Green Templeton College

Professor Neil Mortensen,” taking a trip down memory lane” wore a white coat for his talk. He spoke about being the founder of the Kangaroo Club and said he had decided to name his talk, People, Places and Pouches as he had been asked to talk about his career at the OUH NHS trust -place - and the origin and evolution of pouches and of course pouches belong to people.

Professor Neil Mortensen said it had been a great privilege to have met so many people along the way, including everyone there that day.

Pouch Development

The ileo-anal pouch was developed at St Marks Hospital by Parks and Nichols, publishing its development in the BMJ in 1978. Since then, approximately 40,000 pouches had been made around the world with Oxford being the place where the second most have been developed.

The first pouches were made in a W-shaped design, this was later changed to a J shaped design. This was partly to make their creation easier and partly because changing the design didn’t make a significant effect on the frequency of need to empty the pouch.

Pouch Complications

Professor Mortensen said that prior to 1986, there hadn’t been a single pouch re-do undertaken at Oxford, however by 2014 re-dos had risen to 20% of pouch their operations. These result from Pouch complications:

• Bleeding

• Infarction

• Peritonitis

• Leak

• Pouch and fistula

• Pouch vaginal fistula

• Stricture

• Small bowel stricture

Septic complications are the most common. A fifth of these are due to a leak around the join. “We don’t sleep the night following a pouch operation worrying about leaks.”

These arise because the stapling devices used aren’t perfect, and “patients aren’t perfect”.

Where the whole pouch operation is performed in one go leakage is more of a risk. If the Colectomy has been performed previously, the risk reduces from about a third to 12%.

If the patient is on steroids at the time of the operation there is more chance their pouch will leak.

Any pouch sepsis will take place shortly after surgery. Most pouch failures will occur either very early on or slowly years later.

So, what can be done?

Early diagnosis is key. There is also the option of vacuum assisted healing. Or the pouch might need re-doing.

Salvage

Professor Mortensen drew sketches on the white board to explain the reasons why a pouch might need salvaging or redoing. The reasons can be:

Mechanical:

• Long efferent limb

• Small pouch

• Long blind limb

• Twisted pouch

• Intra pouch prolapse – or ‘hour glassing’

• Anastomic stricture

Sepsis – “infection as discussed before”

• Partial anastomotic separation

• Anastomotic sinus

• Anastomic stenosis

Professor Mortensen summarised the take home message as: “overall 70% of redo operations are successful”.

He then explored complications after redo surgery, stating that pouch failure after redo surgery is around three times more likely than after the initial pouch surgery.

What if reconstruction is not possible?

There are basically three options:

• Pouch excision

• Permanent diversion

• Convert to a Koch Pouch

Pouch Excision (removal) is not for the feint hearted. It’s a big operation with potential for complications.

There is growing evidence that leaving the pouch in place, but diverting the bowel is the safest option.

The conversion of the ileo-anal pouch to a Koch Pouch is “tough on the patient, tough on the surgeon and tricky country altogether.”

Value slips are a common occurrence and require a full tummy operation to repair.

So, what’s the key message?

The key message for surgeons is to “get it right first time”. Be in a surgical team who frequently undertake pouch operations – in one of the top ten.

The key message for patients – ensure that your surgical team are one of the top ten teams for frequency of pouch operations.

Looking back:

Over the last 30-40 years we have seen:

• The creation of pouch surgery – which is now performed all around the world.

• Technical refinement

• Advances in medical treatment for pouch problems – although this is still not brilliant re pouchitis

• Were now in the age of redo surgery – which is no longer last ditch, 70% of re-dos have a good outcome.

Professor Mortensen concluded by saying that it had been an enormous pleasure and privilege to have helped people during a tough time like pouch surgery and he thanked the Kangaroo Club for their support.

Questions:

Q: What are fistulas?

A: There are 3 kinds:

• Anal gland fistula – lots of treatment options just as for non-pouch owners.

• Fistula from pouch join to perineum or vagina – difficult to fix, generally need to redo the pouch.

• Fistula from pouch join to urethra – rare, are things that can be done about it.

Q: What level of exercise can people with pouches undertake?

A: Once healed following the operation, pretty much everything. Perhaps be cautious about lifting massive weights.

Q: How likely is it that a pouch owner will suffer from pouchitis?

A: 10% of pouch patients required long term or continuous anti-biotics?

There is a lot of interest in which bugs are doing the damage. It is an evolving story – there will be more information and treatments down the road.

Please click here to download the presentation: People Pouches and Places

11:20 – Presentation to Professor Neil Mortensen on the occasion of his retirement on the behalf of the Kangaroo Club by Emma Harris: Kangaroo Club Committee Member

11:30 – Pouch Support at the OUH NHS Trust – Simon Turley: Advanced Nurse Practitioner OUH NHS Trust

Simon explained that face-to-face nurse led Pouch Support clinics are held twice a month alongside Professor Mortensen’s clinic at the OUH NHS Trust. The team also give reviews over the telephone – during which they ask exactly the same questions as when face-to-face, the only difference is that the pouch owner needs to get their blood tests done at their GPs prior to the call and either ask for the results to be sent to the Pouch Support team or follow up with the GP for the results.

Please click here to download the presentation

11: 35 – The OUH NHS Trust without Professor Mortensen – Mr Bruce George: Kangaroo Club Chairman, Colorectal Surgeon OUH NHS Trust

Mr Bruce George said that Professor Mortensen has seen pouch surgery from the onset and over a career of 30 to 40 years had had a massive influence on a large number of people.

However, he wanted to reassure everyone that the OUH NHS Trust will be carrying on with pouch surgery at the same quality after Professor Mortensen’s retirement.

Volume of surgery is key

The key factor is the volume of surgery undertaken.

Less than 20 cases over 8 years translates broadly into worse outcomes. This is not just re the technicality, but also in the decision making. Is pouch surgery the right thing to do?

St Mark’s, London has the biggest volume, followed by Oxford – although perhaps Oxford are currently number one in the year 2015.

The future: as envisioned in 2010

Bruce George said that in 2010 he had given a talk on the future of Pouch Surgery, which he had summarised as follows:

• Laparoscopic colectomy

• Laparoscopic pouch formation

• Emergence of” re-do” pouch surgery and the Koch pouch.

In fact, in 2015 Oxford they don’t do any totally laparoscopic surgery, they do “laparoscopic assisted” surgery.  Increasingly the thought is that really difficult technical surgery is better done through open surgery, as this is less likely to lead to complications.

Over the last couple of year there has indeed been an increase in the number of re-dos and also Koch pouches formed. These have often been performed by two surgeons to increase institutional knowledge and prepare for Professor Mortensen’s retirement (he will however be returning to assist with very complicated cases following his retirement).

In 2015 the big new surgical development is taTME or ‘trans anal or bottom-up’ surgery. This is pioneering surgery, which is minimally invasive, but if, and it’s a big if, the patient is large with a narrow pelvis, it is very difficult to get the join to the pouch in the right place.

Robotic techniques are also technological advances (see slides in presentation which can be downloaded below), but they are not yet mainstream and the cost is currently pretty massive.

The future: as envisioned in 2015

So, the future of Pouch surgery in Oxford as expected in 2015?

• Maintaining high-volume, high-quality pouch surgery

• Maintaining challenging re-do and Koch surgery

• Introducing robotics and new techniques as they come on-stream.

Questions:

Q: What is a koch pouch?

A: Basically it is a continent ileostomy (Click here for more details). Surgically and for the patient, this is a big undertaking, it needs a lot of thinking through.

Making the continent valve is a big challenge.

Q: What is the minimum number of pouches that a patient should expect their surgeon to have made?

A: At least 10 per year is probably acceptable. At Oxford we make 20-30 a year– this level will be continuing.

Q: What is the life span for a pouch?

A: No-one really knows, as the first pouches were made in 1978/79. Generally, there is a bit of deterioration in bowel function as we get older, but this isn’t necessarily worse for pouch owners.

Q: How do you ensure the best outcome from pouch surgery?

A: The greatest problem is predicting the outcome of pouch surgery. Sometimes everything goes well, but pouch function is poor- for no identifiable reason. However, generally the outcome is better when you are in generally good health when you have the pouch surgery.

Please click here to download the presentation: OUH without Professor Mortenson

12:00 – The next phase for the Kangaroo Club, including AGM – Laura Dunn

12:30 – Lunch – Sandwiches, cake and fruit and an opportunity to meet and chat with other pouch owners and their partners

13:20 – The Ileo Anal Pouch and Nutrition – Karen Jackson: Dietitian and Nutrition Specialist, OUH NHS Trust

What is the function of the colon?

It is to:

• Re-absorb electrolytes (salts) & water

• Form stools

• Fermentation

• Synthesize & absorb vitamins (Vit K, B12, thiamine)

Post pouch op guidelines

Are to edge back to a normal diet. Reintroduce foods in small quantities (especially fibrous foods) and chew well.

What should you eat to maintain a healthy body?

The normal guidelines for the whole population apply:

Carbs: 55%

Fat 30%

Protein: 15%

Fluid Intake

This is very important for the function of the pouch and general health. High caffeine drinks increase pouch output as can hypertonic drinks such as fruit juice etc. dehydrating further.

It is important to remember that a high output is also likely to result in low potassium which should be replaced. Ripe bananas have a high potassium content.

The WHO rehydration formula is very effective and can be found on-line, one version is here: https://rehydrate.org/solutions/homemade.htm#recipe

Special dietary considerations

If you are limiting your diet at all, take into account your calcium intake.

If you are taking additional vitamins and minerals – speak to a dietician. Too many can be a problem, competing against each other and as they are processed by the liver causing toxins.

The dysfunctional pouch

Studies show that lifestyle impacts the way that the pouch is maintained.

The following can all have an impact:

• Erratic eating habits

• High caffeine intake

• High alcohol intake

• High fibre diet

• High fat intake

• Poor fluid intake

• Sorbital intake – this is a sugar substitute which is increasingly found added to products to prolong their shelf life. Is also added to liquid medications. It can irritate the bowel and create high output.

• Irritable bowel syndrome

• Food intolerance – might be developed when unwell pre-surgery, or if suffering from pouchitis

• Pouchitis

Get back to basics and really know what you are eating.

Do Probiotics help?

The studies have only involved very small numbers, the Cochrane library looked at all the evidence in 2010, only 11 trials world-wide significant enough to form an opinion. On the basis of these, they said VSL#3 is more effective than a placebo.

It should be used for a minimum of 3 months.

Foods to thicken output

See slide in presentation, which can be downloaded below.

NB Mashed potatoes shouldn’t have any skins.

Banana should be ripe.

Foods that increase pouch output

See slide presentation, which can be downloaded below.

Also, chickpeas, baked beans, peas, blueberries, strawberries, raspberries.

But don’t avoid, unless in high output.

Optimising pouch function

Eat freshly cooked carbohydrate e.g. fresh pasta not dried.

Avoid foods that cause you irritation – this varies from person to person.

If needs be get a formal assessment from a dietitian.

Good nutrition and healthy eating make a difference!

Please click here to download the presentation: Ileoanal Pouch & Diet

14:00 – Discussion Groups:

• Diet (Group discussion led by Karen Jackson and Martin Brandt)

The main comments captured were as follows:

Be careful about ready meals and processed foods – it hard to know what’s in them.

If you like foods that cause wind and you are at home, don’t worry about it!

Experiment with quantities.

Eat something before you eat salad.

• Lifestyle and exercise (Group discussion led by Laura Dunn and Emma Harris)

The benefits of Pilates were discussed: building up core stability, strengthening the pelvic floor, protecting your back by having strong core muscles. Helpful for other exercise – such as cycling, core strength is really important for controlling the bike. There are many DVDs on Pilates exercises, covering the basics for beginners and onwards.

It was agreed that the key thing is to get out there, do some exercise and live your life. Find reasons to get out, especially to the countryside.

Walking works well, the impact helps with bone density.

After the pouch operations, just take it easy and build up. People had used the treadmill, bike, cross trainer – after they were well, they had done virtually everything.

One of the group recommended mediation, lots of people felt it was important to get your mind in the right place. It was felt that it is easy to be negative and important to have a positive frame of mind.

It was generally felt that stress makes pouch function worse, but that it can’t always be avoided. Singing makes some of the group feel positive – and it was agreed that you should do what makes you feel good.

14:30 – Brief Break

14:35 – Question and Answer Session – Simon Turley: Colorectal Nursing OUH NHS Trust and Angie Perrin

Q: If I have a pouch because of FAP, rather than UC, does that mean I am less likely to get pouchitis?

A: Yes, it would be extremely unusual.

Q: How do I reduce pouch output from 14 times a day?

A: Take loperamide – half an hour to an hour before you eat. Consider all the facts talked about diet and make sure that you empty your pouch fully. Tilt your pelvis and use your core muscles.

Q: Once the colon has been removed, are there additional manifestations of UC?

A: Skin conditions and inflammatory arthritis are the most common.

Q: When should you begin taking loperamide?

A: Establish a pattern of eating after surgery and once this is settled introduce loperamide as needed. Learn to adjust the dose as needed.

14:35 – Looking to the Future for Pouch Owners – Laura Dunn: Pouch owner since 1985

Laura started by saying that she wanted to focus on the positive for the final session of the day, looking forward instead of looking at the sufferings of the past or perhaps the present.

She introduced the topic of longevity, something Laura said she thought we would all be interested in.

Laura said she was sure we have all at one time asked ourselves:

• What happens to pouches over time?

• What is the future for pouch surgery?

• Will it continue to be the ultimate solution for UC patients, or will it be obviated by medical or pharmaceutical developments?

Laura then explained that she is well qualified to talk about longevity, as she has had her pouch since 1985!

She told us that her pouch was one of the first pouches done in the John Radcliffe by Michael Kettlewell. So, as she said, her very presence here suggests that there is hope!

Laura explained that although it hasn’t always been easy, particularly in the early days, it did get better. She thinks she has been lucky as she has never had pouchitis and is generally in good health.

Laura told us that she believes the key here is INDIVIDUALITY, we are all different and how our pouches will change over time is different.

Survey Results

Laura then went on to discuss the results of the Kangaroo Club survey of pouch owners. She started by saying a big thank you to everyone who responded to the survey entitled: “What are the best and worst things about having a pouch?”

Laura told us that the results were really illuminating, but she needed to add a caveat; she explained that sometimes it wasn’t clear whether people were comparing their post-pouch situation with the time when they had the original disease, or with the interim stage when they had an ileostomy bag.

As Laura explained the results it was clear that many things went both ways:

On diet:

Best: being able to eat what I like

Worst: having to be really careful what I eat, or restrict food intake

On feeling well:

Best: not having UC anymore

Worst: having pouchitis is just as bad as having UC

On freedom:

Best: not having to keep going to hospital

Worst: having to keep on going to hospital, even when feeling well

On being sociable:

Best: the pouch allows me to lead a normal social life

Worst: having a pouch is very isolating

On going to the loo:

Best: it’s much easier to go to the loo than it was with a bag

Worst: going to the loo is so difficult, or so noisy

On frequency of going to the loo:

Best: I don’t have to worry so much about locating the loo

Worst: frequency of needing to go to the loo, or soreness as a result of this

On continence:

Best: less fear of leakage

Worst: fear of leakage, or actual leakage, especially at night

On longevity:

Best: my pouch function has got better over time, I have less leakage, or less pouchitis

Worst: As I’ve got older my pouch isn’t as reliable and sometimes it’s a problem

Laura explained that there was very little disagreement on some of the obvious negatives:

• Pouchitis – debilitating – worries about side effects of long-term anti-bs, potential loss of pouch

• The cost of the probiotic VSL3

• Some people find it harder to get pregnant

• Some are unhappy at the idea of a C Section, instead of natural delivery

Finally, Laura quoted this response to what is the worst part of having a pouch, “The long and uncertain road to get to where I am.

Laura then told us about the universal positives:

• No bag

• Feeling almost ‘normal’ – whatever that means!

• Sex is more comfortable, or less scary

Laura ended this section with 3 anonymous responses to the best thing about having a pouch that were particularly thoughtful and illuminating:

“The chance to live a near-normal life and go out for the day without worry, and to feel fit and healthy and good about myself.”

“If I treat it with respect, my pouch gives me a good deal of control over my life.”

and finally

“Knowing that the many challenges I’ve overcome has made me a better person – it has given me an inner steel but equally, a greater humility towards others.’

Laura then (referencing her day job as an English teacher) quoted King Lear:

“I have no way, and therefore want no eyes;

I stumbled when I saw: full oft ’tis seen,

Our means secure us, and our mere defects

Prove our commodities. O dear son Edgar,

The food of thy abused father’s wrath!

Might I but live to see thee in my touch,

I’ld say I had eyes again!

Oh Gods! Who is’t can say ‘I am at the worst’?

I am worse than e’er I was….

And worse I may be yet: the worst is not

So long as we can say ‘This is the worst.”

Laura admitted that this process is not plain sailing, and we have all been through a tremendous amount, even to have got to where we are today.

She also said she thought the last respondent to the survey was right to suggest that it is, to an extent, up to us to make the experience ultimately positive.

Laura finished the session with the following advice:

• BE POSITIVE

• HANG IN THERE

Please click here to download the presentation: The Future for Pouch Owners

15:30 – End

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