Date: Saturday October 6th

Venue: John Radcliffe Hospital, Oxford

From 10:00 – Registration, with Coffee on Arrival 

Everyone was asked to write what they hoped to get out of the day on a post-it note (Hopes for the Day) which were gathered together into rough groups to form the topics for the break-out sessions

10:30 – Welcome and Domestics – Laura Dunn: Kangaroo Club Chairman

Laura began by welcoming all the attendees and introducing the committee members.

10:40 – Pouch Surgery (Developments and Variations) – Mr Bruce George: Kangaroo Club President, Colorectal Consultant Surgeon OUH NHS Foundation Trust

Mr George began by asking for our help, he wanted to know what information patients felt they needed to know when making decisions about what surgery they should have.

Mr George then gave us some background information, so we could understand why he was asking us this question. The latest SWORD (Surgical Workload Outcomes Audit Database) data shows us:

• A gradual reduction in pouch surgery per year in the UK, it has experienced a constant decrease from 425 to 340.
• More and more the procedure is done using keyhole surgery.
• The average length of hospital stay is 10.1 days – Mr George expressed a slight disappointment in this.
• 6% of people had a re-operation within a month of the initial surgery and 27% were re-admitted into hospital within the first 6 months.
• 126 surgeons did 1 surgery each and 26 surgeons did less than 15 procedures in 5 years – Mr Bruce commented that as a patient this is not what you want, the more procedures your surgeon has done the better!
• The main indication for surgery were:
  • An acute UC attack
  • Failure of medical therapy
  • The risk of malignancy (cancer)
  • Growth in children being retarded

Mr George said that in these cases the options are:

• Ileostomy
• J-pouch/Ileo-anal pouch
• Kock Pouch
• IRA
• No surgery

Mr Bruce explained that since it is uncommon for surgeons to perform the Koch Pouch and IRA surgeries and no surgery isn’t always possible, the big decision tends to be between having an Ileostomy or an Ileo-anal pouch.  This brought us back to Mr George’s original request:

If you were making this decision now what would you like to know? What do you wish you had been told? What is important for the patient to know? And what could the doctors and nurses do better?

We got into small groups to discuss the questions set by Mr George.

Mr George then explained to us the factors which influence surgical thinking.

• The only reason for a pouch is to avoid an ileostomy.
• The certainty of diagnosis – if someone has Indeterminate Colitis or Crohns, this effects the decision.
• If a patient is on steroids or anti-TNF drugs, then the outcomes for surgery are worse.
• If a patient’s sphincters are damaged, then the pouch function is worse.
• The health of the person, if they are frail then their outcomes may be worse.
• The patients coping, socialising skills and if they have any anxiety.

In general, the surgeons recognise the 4, 4, 2 rule:

• 40% of people do really well
• 40% do okay
• 20% do quite badly – 10% have a reversal and 10% feel very unwell for a long time.

Mr George explained that a Koch pouch might be an option if the rectum is too damaged; the surgeon creates a reservoir which is attached to a stoma which is emptied when a catheter is inserted and it should not leak. It is very complicated, high-risk surgery, only possible if you have a functioning ileostomy and patients need to be very aware of this and still very motivated to have one.

Then all of the groups fed back what they had wished they had known when making the decision to have surgery, these included:

Information about Ulcerative Colitis and Indeterminate Colitis. Specifically, could it be that your symptoms are being managed for Ulcerative Colitis when it isn’t 100% sure what you have?

Mr George explained that UC is always said to be unspecified, unless you have had your colon removed, in which case it will be said to be Indeterminate UC.

How having emergency surgery effects the decision and where you can get good information if you have had emergency surgery?

Mr George told us that when you have emergency surgery to remove your colon the surgeon will leave the decision open ended and you will be able to have pouch surgery later or opt for a permanent ileostomy.

How to find out the success rates of a particular surgeon and nationwide success rates?

This information is available in published papers, however the best question to ask is how many surgeries they have done and how many cases are in the hospital. Mr George stressed the importance of the second factor, saying that there is lots of evidence which says hospitals with more patients make better decisions. Talking to the stoma nurses is also going to be very helpful.

Can I have a J-pouch reversal?

Although a reversal is possible and in many cases is necessary, it is not as easy as trying a pouch and if you don’t like it going back to an ileostomy. End ileostomies after a colectomy are so much better than ones done after pouch surgery. Often the failed pouch is left in place but is taken out of the circuit, the cancer risk is minimal but, in some cases, the pouch must be removed if it is infected.

Another thing which came out of the discussion was that the comment that it would be good if the surgeons, doctors and nurses could use simpler language so that patients can better understand what everything said means and what will actually happen to them.

Another comment was that consistent advice would be helpful. Mr George said that differing advice from different people might actually be a good thing, sometimes people give false information which is bad, but differing viewpoints are good and help you to come to a decision.

The presentation slides for this session can be found here: Pouch options 2018

11:35 – What is Normal?  –Laura Dunn (S-pouch), Emma Harris (Ileostomy), Paul Whitford (J-pouch)

This topic arose from the 2017 Information Day, when both Dr Oliver Brain and dietician Lisa Vokes emphasised that everyone has their own different ‘normal’ and what works for them.

Three of our committee members agreed to talk about what ‘normal’ means to them.

Laura Dunn (S-pouch)

Laura started by explaining that she has one of the oldest and very earliest pouches.

Laura’s initial surgery was in 1982, it was meant to be three-stage, but Laura became very ill and it ended up being several stages. Laura really did not want to have an ileostomy but was forced to because of how ill she was, eventually she had her pouch surgery in 1985.

Laura said she initially had many problems including wound infections and abscesses, but that she has got increasingly better over time. She then said that she had heart failure 10 years ago and now takes selenium to try to avoid this recurring and has abscesses on her ovaries – but that these are not pouch related.

Laura described herself as reasonably fit, “for a 57-year-old with the body of an academic” and she feels very well in her day-to-day life. She has no need for loperamide, VSL3 or antibiotics and she has not had pouchitis as far as she is aware.

Laura’s S-pouch requires a catheter to empty it, which she does about 4 times a day, so she has no problems with continence – although the tube is quite thin so can get blocked. As a result, she avoids eating raw cabbage, mushrooms and sweetcorn. She also ensures she eats a lot of soup!

Laura said she might have some potential absorption issues, so she eats a bit more salt and drinks a lot more water than most people, but this does not affect her quality of life.

Emma Harris (Ileostomy)

Emma started by saying that she has had a few different ‘normals’ over the years. She had Ulcerative Colitis for about 8 years which led to an emergency colectomy in 1995 and later on that year she had pouch surgery.

Emma said that for many years she had a successful pouch. She had a few adhesions and a blockage, but generally she was able to eat what she wanted, although she avoided fruit and salad and always took loperamide before eating. Most importantly though she was able to drink wine! She tried VSL3, but it didn’t seem to help her. She estimated that on average she went to the loo five to six times a day and twice at night, but as she has never had problems getting back to sleep this didn’t worry her.

For 15 years she was mostly well – she had a few bouts of pouchitis but overall felt healthy. Unfortunately, she then became being really quite unwell with pouchitis. At first, she was on and off antibiotics and then needed to take them permanently, which helped for a while, but gradually they stopped working. Emma told us that she had promised herself she would never get as ill as she did just before she had her colectomy, but it took her a while to get her head around the idea of the reversal.

In 2013 Emma had pouch reversal surgery and now has an ileostomy. Emma told us that as a result she now has a much better quality of life, she eats whatever she wants and does lots of sport, including running, cycling and Pilates. She could take loperamide, but she manages fine without it and is very happy to be drug free.

Paul Whitford (J-pouch)

Paul described how he had Ulcerative Colitis for 25 years before he had surgery which was done in two stages. The first stage created a stoma bag which he was keen to get rid of as he is very active and found it could get in the way of this. Paul had his pouch surgery in 2014.

Paul said that his normal when he had Ulcerative Colitis was going to the loo about eight times a day and now it’s only four to five times a day and once at night. He has to be careful with staying hydrated and makes sure he drinks a lot of water at night, but this might not be any more than anyone else.

Paul told us that he largely eats anything he likes, although he tries not to eat fatty foods too often, he doesn’t eat nuts alone, but he will eat things with nuts in them. Paul also said that he can’t eat pepper, chilli flakes or mustard and he can’t digest mushrooms, but thinks they aren’t normally digestible anyway. Paul now finds it hard not to put on weight, when he used to have the opposite problem! Paul also avoids drinking with meals as he finds this hinders digestion. When he goes to the pub, he tends to choose G&Ts and red wine over beer, but he also mentioned that he had drunk two pints of beer the previous night and most definitely isn’t sober for October!

Paul said he used to take fifteen loperamide a day but now he only takes seven, five before breakfast and two before bed. Paul said he can get quite dry skin and itchy legs, so he takes a piraton for that, he also takes one ciprofloxacin a day which makes his pouch function better and he takes calcium and vitamin D every now and again as Ulcerative Colitis stops the uptake of calcium and he believes everyone is deficient in vitamin D. Paul also finds that his pouch function is getting better and better over time.

12:10 – About the Kingston Trust – Julia Dook, Chair and Trustee, The Kingston Trust

Julia began by telling us what the Kingston Trust does: provide monetary support for people with ileostomies and internal pouches who are in financial hardship.

The Kingston Trust was established by Julia’s father in 1962. Leslie Kingston had been invalided out of both the Army and Navy due to his Ulcerative Colitis – during the next 20 years he had 20 operations for his colitis and went from weighing 13.5 stone to just 6 stone. In order to improve his condition, he was given a permanent ileostomy.

At the time the stoma technology was not as good as it is now, in fact Leslie Kingston was sent home with no instructions as to how to look after it. So, when he was discharged he made himself a stoma bag using materials from the bike repair kit, but he was forced to return to hospital as the skin around his ileostomy was very sore.

Leslie Kingston began to wonder how elderly people might deal with an ileostomy, especially since at the time most care homes didn’t accept patients with an ileostomy – one lady who was accepted was forced to sit alone.

Thus, it was decided that an ileostomy association should be set up – in 1946 it was known as the QT, but it quickly changed its name to the ileostomy association. The IA gave out information such as how best to care for the skin around the ileostomy and trained stoma care nurses. They then set up a trust: The Kingston Trust – with the objective of setting up Homes throughout the country where Ileostomists in need would be cared for by people understanding the disabilities involved.

In 1964 the trust opened a home for convalescence and holiday relief. They also taught people how to manage their ileostomies and gave them tips and tricks, eventually they had several homes and some of them had full time residents.

Julia told us that the trust initially raised money through bring and buy sales, marathon sponsorships, donations and legacies. Then in the 1980s they began to sell the homes off as people found it easier to manage in their own homes or didn’t want to move and the homes couldn’t run with only a few people living in them.

Julia told us that in 2017 The Kingston Trust expanded it remit to include younger people and those who have ileo-anal pouches. She then explained who can apply for grants: people with permanent or temporary financial hardship and those aged 16 and older with ileo-anal pouches and ileostomies. The trustees will consider all qualifying requests such as holiday relief, washing machines, tarmacking driveways and modifying bathrooms.

Julia told us that applications can be made by filling out a form with the details of the applicants GP, stoma nurse and surgeons. They are considered at any time of the year, there is no ceiling on the amount requested. Applicants are not limited to one grant but must be over 16 and have either an ileostomy or ileo-anal pouch.

More information can be found at www.kingstontrust.org.uk or by emailing secretary@kingstontrust.org.uk

The presentation slides for this session can be found here: The Kingston Trust

12:30 – Colorectal Surgery as a Speciality and Occtopus – Professor Neil Mortensen: Colorectal Consultant Surgeon, Professor of Colorectal Surgery University of Oxford Medical School, Fellow of Green Templeton College, Vice President of the Royal College of Surgeons of England

Professor Mortensen started by saying that he had been very humbled to hear the ‘What is Normal?’ stories, as he was one of the early pioneers of pouch surgery 40 years ago. Professor Mortensen said that you can’t know everything about a procedure in only 40 years and sometimes pouch function just gets worse over time.

Professor Mortensen talked about how surgeons’ ideas change over time; forty years ago it was thought that pouch surgery was only for younger people, but now they will happily do the surgery on people in their seventies. He told us about two patients in their sixties when they had pouch surgery, who are now in their eighties and are fighting fit and have very good pouch function.

Professor Mortensen told us that pouch surgery has its origins in Bristol, where they performed more S-pouch than J-pouch surgery. He explained that it started off as a kind of human experiment and patients spent many months on the wards recovering from the surgery. Professor Mortensen explained that he was the registrar for Sir Alan Parks – who invented the surgery – at St Marks Hospital, so he was there at the very beginning of pouch surgery.

Professor Mortensen reflected on how surgery and surgeons have changed over the years. During the second world war ‘general surgeons’ could perform any procedure which was needed, such as:

• Cardiac
• Urology
• Vascular
• Gastrointestinal – which has now been split into ‘Upper GI’ (everything above the small intestine) and ‘Lower GI’ (the small intestine and colon)

Professor Mortensen explained how in order to become a skilled surgeon people need to practice for many hours.  It used to be that a surgeon needed to have practiced 34,000 hours of surgery to become a consultant but now it is just 8,000 hours, so they must be more specialised in order to have the same level of skill.

Professor Mortensen told us that he has been very lucky in his professional life as he was around at the beginning of pouch surgery, the beginning of the specialty and – most importantly of all – the beginning of the Kangaroo Club!

Professor Mortensen explained how Occtopus began its life as a trust fund, but it took a hit on the stock market, so Professor Mortensen decided to set up a charity to raise money. Occtopus focuses on the three C’s: Cancer, Colitis and Continence. So far, they have raised half a million pounds, gathered a lot of research and funded new keyhole theatres in the Churchill hospital.

Professor Mortensen then told us about a very exciting lunch he had had in June 2018 (the actual lunch wasn’t exciting it was a very average salad) during which he asked his lunch companion to largely fund a permanent chair in the Blackwell name at Oxford University (this costs £3.5 million) for Gastrointestinal surgery. They agreed! This will mean that GI surgery will always be in the conversation and is really fantastic news!

Professor Mortensen then answered some of our questions.

Laura started the questions by asking:

Q: How does Occtopus raise money?

A: Professor Mortensen told us that they have a few different ways to fundraise, they have day-to-day sponsorship which raises money such as cake sales and marathon running, they also went to industry to ask for cheaper theatre equipment, they asked people for specific things and people with high net worth for donations – if you don’t ask you don’t get! Some people are very rich and need a little help with the best way to spend their money!

Professor Mortensen stressed the importance of having a focus such as ‘this is what we want to do, how much will this cost?’

Q: Why has there been a reduction in pouch surgeries?

A: Professor Mortensen told us that there have been more new medicines developed in the last few years, so some people delay their surgeries due to new medicines. This might be permanent, or it might just be a cohort of people whose surgeries have been delayed due to new medicines. So far, the specialty has not been disadvantaged funds wise.

Q: What is your opinion on high volume or low volume centres?

A: Since there are only a certain number of patients, for some centres to be high volume, some centres need to be low volume. However, since pouch surgery is the most important few hours of a patient’s life – hospitals must get it right.

It is a hard surgery to get right, so Professor Mortensen said that having a minimum number of surgeries per year per hospital would be a good idea. If you want the very best, you may need to travel to a high volume centre.

Q: I had my Surgery in Glasgow in 2001 which was fantastic, but the aftercare was rubbish, what can we do to improve the aftercare we get?

A: Professor Mortensen started by saying that is what the Kangaroo Club is for, to ensure you get the support and care that you need, which is why it is so important we continue to run. He also said that normally your first point of call for care is with your GP, but they might not know anything about it – this means you end up educating them yourself. In Oxford we know where to go for support, but this isn’t always the case in other places.

Angie Perrin had researched the outcomes for pouch patients for her Masters’ thesis which showed that those who came away from high volume centres had much better aftercare than those in low volume centres. High volume centres often have the facilities to support patients no matter where they are, so if you can travel there you will probably get better care.

Q: How many pouch surgeries have you performed?

A: Professor Mortensen answered this by simply saying “about 300” – how impressive!

Q; How often should we be looking at/checking up on the pouch?

A: As a scientist and academic Professor Mortensen answered that he is obviously interested in how pouches are doing as an academic exercise, but for now the current wisdom is that we only need to check on pouches with a possibility of cancer changes. Most of the time pouches only need to be monitored when people are unwell. Another thing to consider is the cost of examining pouches, it is a lot of money which shouldn’t be spent if it is unnecessary to do so.

Professor Mortensen left us to go to his Mother in Law’s 100^th (!!) birthday party and said how pleased he was to see so many of his former patients and the Kangaroo Club doing so well.

13:00 – Lunch – Sandwiches, cake and fruit and an opportunity to meet and chat with other pouch owners and their partners

13:40 – The Kangaroo Club Update (Website & Facebook Group) followed by AGM

During this session Elena Harris explained how to sign up to Facebook and use The Kangaroo Club’s private Facebook Group.

Her slides and instructions can be found here: Facebook

14:00 – The History of the Stoma bag – Angie Perrin: Clinical Lead, Innovation, Salts Healthcare

Angie began by introducing herself, she became the lead stoma/colorectal care nurse at the Oxford Radcliffe Hospital NHS in 1998 and in 2002 (or 2003, she wasn’t sure!) set up the first UK nurse-led ileo-anal pouch clinic. In 2012 Angie moved to join Salts Healthcare.

Angie then took us through the history of the stoma bag.

1948 – Edward Salt and Bryan Brooke began to hand make ostomy bags.

1956 – Salts became the first company to manufacture ostomy appliances in the UK – the rubber pouches are still made in the UK now.

1958 – Norma Gill becomes the first ileostomist in the United States.

1971- Barbara Saunders a ward sister at St Barts Hospital was appointed as a stoma care nurse.

In the United States Jimmy Chen and E.R. Sqibb developed Stomahesive which was a first-generation hydrocolloid. Angie told us that a hydrocolloid means it is water loving and has a substance microscopically dispersed throughout another substance. This means it is both fluid-loving and adhesive, the perfect material for a stomahesive.

Over the years Salts has built on these initial products to developed stoma bags in the Coloplast Assura Range, Convatec Durahesive, Hollister Moderma Flex, Salts Natural Range, Clinimed Aura Range and Coloplast Sensura.

Angie told us as part of her role at Salts, she talks to patients to find out exactly what they want in a stoma bag. This has resulted in the next generation of stoma bags – Coloplast Sensura Mio and Salts Confidence Be – which offer more colour options: nude, white and black. Angie said she had given samples to people who had their surgery up to 20 years ago and while they didn’t know quite how to feel about these new style bags to start with, once they tried them they found they really liked them.

The presentation slides for this session can be found here: The History of the Stoma Bag

14:20 – Break-out Sessions, based on Hopes for the Day

• Living with a pouch
• Treatment developments: what to expect
• Reverting to an Ileostomy
• Supporter group

15:20 – Question and Answer Session – Fran Woodhouse, Simon Turley: Senior Specialist Nurses, Colorectal Nursing Team, OUH NHS Foundation Trust, Laura Dunn, Paul Whitford. Led by Angie Perrin

The Question and Answer session was carried out in the style of a gameshow. Angie played the host and read out the questions while the contestants Fran, Simon, Laura and Paul were given buzzers to press if they knew the answer to the question.

Q: Can you recommend any medication or ways to help with trapped wind?

Simon won this round!

A: Simon said you should look at what might be causing the problem, long periods of time between eating, eating very quickly, chewing gum and smoking have all been known to cause trapped wind.

Simon told us that in addition to trying to change your habits you could also try charcoal tablets (although these are not very nice!), peppermint tea, or cordial. Another option is to talk to your stoma nurse about getting a catheter, you can insert this to release the wind. The process can be rather difficult which is why it’s best to talk to your stoma nurse first, Angie has written an advice sheet to help with it!

Q: When I had an ileostomy I had a medical exemption certificate for my prescriptions, am I still entitled to this with a pouch?

Fran was first to buzz this time!

A: Fran told us that, no, unfortunately you can’t get a medical exemption certificate when you have a pouch. Fran also recommended setting up a direct-debit or pre-payment as this can make it much cheaper.

Q: How likely is it that pouch surgery is followed by extreme post-operative sickness, lasting several days?

Paul got to answer this time!

A: Paul said that it depends how good the surgeon is and how well the surgery goes. Paul told us that he was in hospital for five weeks after his first operation but that after his second two operations he was out of hospital very quickly.

Fran added that sickness can often be caused by a reaction to the aesthetic – if you know that this often makes you sick, tell your nurse and they can help you by giving you anti-sickness medication.

Q: How can I best manage preparation before and during a long-haul flight when I usually take 15 loperamide a day? Is there any way to avoid taking so many tablets on the flight?

Laura was first to buzz!

A: Laura advised trying to get an aisle seat and when you do have to go to the loo, spraying then try using VIPOO or Poo-pourri which both work very well at neutralising the smell and saving any embarrassment you might feel. She also recommended taking aspirin and wearing flight stockings, but these are not loo related!

Fran added that you should think about what foods you are eating before and during the flight, avoiding triggering foods and fluids such as alcohol and fizzy drinks.

Angie added that if you are taking that many loperamide capsules, you might find that they aren’t being properly absorbed and ‘loperamide melts’, which dissolve under your tongue might be a better alternative. Angie also suggested the loperamide syrup but obviously the high sugar content might mean this isn’t suitable for some people.

We also had a recommendation for Norimode, a small uncoated loperamide tablet, from the audience.

Finally, Simon added that if you are worried about travelling with lots of tablets then you can take a letter with you from your GP or a copy of your prescription.

Q: I had J-pouch surgery in April 2018 – how long does it take to settle down?

Laura won this round!

A: Laura quoted what Dr Brain said in 2017, it could be one year, it could be longer, give it five years and don’t despair.

Paul added that his pouch function has been steadily improving over the last four and a half years.

Q: What is the difference between the J-pouch and the W-pouch?

Angie used her considerable expertise to answer this question.

A: A J-pouch is easier to empty as it has a smaller reservoir which means it uses less bowel, but it is more prone to incontinence.

The W- pouch has a larger reservoir so is more difficult to empty and uses more bowel but is less prone to incontinence.

Angie told us that in a study comparing the two it was found that people with a W-pouch went to the loo more and the J-pouch had better functionality.

Q: What is the volume of a pouch compared to the volume of the colon removed?

A: Angie, told us that the pouch is replicating the rectum not the colon, the rectum stores output. Although the pouch should get bigger over time it is made from different stuff to the rectum so doesn’t stretch like the rectum does.

Q: Does this mean those with a pouch go more because it is smaller than the rectum?

A: Simon answered, yes, but also with an in-tact colon the output is more solid, and the ileum is more active which reduces the amount you need to go.

Q: What is the best toilet paper to use?

A: Laura told us her preferred toilet paper is Tesco’s Aloe-Vera, which is soothing due to the Aloe-Vera content and is thick, so it doesn’t fall apart. She warned against Andrex saying that she finds that the leaves often come apart.

A member of the audience recommended using baby lotion on toilet paper saying it was very soothing.

Q: How ‘welcome’ are calls from pouches with post-surgery questions who have not had their surgery at Oxford?

A: Fran and Simon said that they would not be able to take calls from pouch owners that have not had their surgery in Oxford as they would not have access to their surgical records/history and therefore would be unable to provide appropriate advice. They said please contact your local stoma nurse for advice. However, if your local nurse needs some advice they could always contact the Oxford Stoma/Colorectal Department. All stoma nursing teams should have a copy of the SALTS ‘Ileo-anal pouch Resource Pack for Specialist stoma nurses’ first produced in 2014 & updated in 2016, which was co-written by Angie, and provides all sorts of information on different aspects of pouch surgery & lifestyle.

16:00 – End

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