Information Day 2017

10:00  Coffee on arrival

Everyone was asked to write what they were hoping to get out of the day on a post-it note. Some wrote specific questions which were answered throughout the day, others more general hopes/aspirations. These were divided into groups: Diet; Surgical; Meeting Others; Life with a Pouch; What’s New; Common Problems; Tips and Tricks and What to look out for.

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

10:45 Putting Pouch Problems into Context  – Dr Oliver Brain: Gastroenterologist OUH NHS Foundation Trust

Dr Brain began by saying that the “Patients are experts”, although medical experts can say what is normal for a pouch from their perspective it is different for every individual and ultimately you know what is normal for you. This idea of individuality became a theme of the day, what is normal for one person is not for another. Dr Brain then explained that normal pouch function should stabilise one year post surgery and from a medical perspective is characterized by:

• 6-8 bowel movements per 24 hours

• 1-2 bowel movements per night

• Lack of urgency in bowel movements

• The output is expected to be loose and semi formed

• Occasional seepage

Dr Brain explained that often this would get worse as patients got older and their pelvic floor weakened.

Comparisons with ‘normal’ bowels

Dr Brain then compared how normal pouch function to bowel function in people who had their full bowels saying that although some people go once or twice a week and others go four times a day. People with regular bowels do not go at night, this is something which is unique to people with bowel problems. There is however a huge variation of function between people with full bowels and up to 15% of people have IBS.

Dr Brain cited a study of 278 women aged 60, 146 were ‘normal’, 72 had diarrhoea (IBS-D) and 58 had constipation (IBS-C). Within this group the problems reported were:

• Urgency 16%-31%

• Straining 5-23%

• Postprandial BO 25-34%

• Incomplete evacuation 13-32%

It is important to note that the study was made up of all women and women are more likely to have digestive problems.

Laura noted that this was very encouraging, it is very easy to focus on the downfalls of having a pouch, but in actual fact there is a huge variation in ‘normal’ gut function and many people go to the loo often, not just those with pouches.

What is Pouchitis?

Pouchitis is inflammation of the pouch which is suggested by:

• Stool Frequency

• Urgency

• Bleeding

• Incontinence

This diagnosis is confirmed by a pouchoscopy and histology. Interestingly pouchitis only occurs when the ileostomy is closed.

Dr Brain informed us that pouchitis can either be acute or chronic, acute pouchitis lasts less than four weeks while chronic pouchitis lasts longer than four weeks.

Pouchitis can be:

• Infrequent

• Relapsing

• Continuous

• Treatment Responsive

• Treatment Refractory

Dr Brain said that 50% of patients with Ulcerative Colitis patients have more than one acute episode and 60% suffer from chronic pouchitis. 10%-15% of all pouches fail and have to be reversed.

There is conflicting evidence for why people get pouchitis, but people with FAP (Familial Adenomatous Polyposis) where lots of polyps are formed on the bowel so it must be removed and a pouch is formed, almost never get pouchitis  – which indicates that pouchitis might be due to genetics. Patients are more likely to get pouchitis if they smoke or had severe Ulcerative Colitis previously, which Dr. Brain pointed out is more indication that it is related to genetics. Another thought is that Pouchitis occurs because the pouch is formed of the small intestine and is doing the job of the large intestine which it can struggle to cope with and get infected.

Dr. Brain was asked if there was any data about how much time after the operation usually passes before pouchitis occurs. Although he reiterated that everyone is different and there is no rule it is rare to get it after you have had a pouch for a long time without contracting it as most people get it within a few years of surgery.

Dr. Brain then went on to talk about Dysfunctional Pouch syndrome which he said was not a helpful term, that is used to talk about all manner of problems with the pouch. It is often used to mean: a poorly functioning pouch; an inflamed pouch or pouchitis. Dr. Brain said the reason this term was unhelpful was due to the broad range of issues it can be used to mean, it is for this reason it is not a diagnosis but an indicator that something is wrong. The risk factors involved in having a Dysfunctional Pouch are: IBS; Weak Sphincters; surgery; peri-pouch sepsis, anastomosis formation, small pouch volume, lifestyle and diet.

Dr. Brain told us that the key to good pouch function is how well the surgery goes, if the surgery goes well with no complications, you are much more likely to have better long-term pouch function.

Dr. Brain then explained how some of the most common problems are diagnosed and how they can be treated.  Pouchitis can be diagnosed by looking in, above, below and around the pouch using an endoscopy, if these areas are inflamed then it is diagnosed to be pouchitis. Often experienced nurses and doctors can diagnose this based on symptoms and an endoscopy is not necessary. Pouchitis is treated using antibiotics which are usually very effective. Weak Sphincters are diagnosed by hearing about the symptoms and can be dealt with using pelvic floor exercises in less serious cases, Loperamide or Oodive in more serious cases and an ileostomy in the most serious cases.

Dr. Brain told us about small Pouches which are very rare and subjective, they are best diagnosed by a surgeon who may decide corrective surgery is needed. If the pouch is not emptying properly this can be treated using a medina catheter, bio feedback, revision surgery or in very severe cases an ileostomy. Irritable pouch syndrome can be caused by a weak pelvic floor, some lifestyle factors or a faster working than usual small intestine so your doctor will look at your lifestyle and work with you to improve your pouch function. Sometimes anti-depression medication can be used to help with the pain and alleviate and improve symptoms. As with many other pouch problems severe cases may result in an ileostomy.  Dr. Brain told us that the narrowing of the small bowel is quite common and can be treated by stretching the top with a balloon, the narrowing of the lower end of the pouch is more complex to treat and tends to be handed over to surgeons. Often in most cases doctors will do several tests and find out which course of treatment is the most appropriate.

Dr. Brain told us that Pouch dysfunction is generally measured by what disrupts the patient’s life, this is often urgency, incontinence and going often during the night. In general, although everyone is different, people with pouches tend to go at a higher rate than normal, but this can be managed.

Dr. Brain was kind enough to stay and answer a few very interesting questions at the end of his talk.

Q. Can you recommend any medication to slow or control bowel movements?

A. Dr. Brain said that patients can often have problems with Loperamide capsules as the outer casing can take a while to dissolve, which means they pass through the bowels too fast and have no effect. Loperamide tablets dissolve faster so they don’t have this problem. However, Dr. Brain mentioned some patients still have problems with the Loperamide tablets in which case he recommended liquid Loperamide which comes in both low or high strength.

Q. What are your thoughts on VSL 3?

A. Dr. Brain said that VSL 3 was a good option for some, but can be difficult to get hold of and isn’t very palatable. It is helpful if you have recurrent pouchitis as it modifies the bacteria in the gut. Dr Brain said that many people can get tired of taking it and stop tolerating it.

Q. Can you recommend some effective antibiotics for Pouchitis?

A. Dr. Brain told us that many common antibiotics stop working after an extended period of time. Although many people can be on antibiotics long term, this does mean that the goal posts can keep moving. Dr. Brain recommended three antibiotics Ciprofloxacin, Metronidozol and Augementin. Some attendees reported having trouble getting a prescription for Ciprofloxacin, Dr. Brain said this was probably because some areas try to limit the prescription of some drugs in order to stop a resistance. However, you should have access to the antibiotics you need and if this happens you should speak to your surgeon who can rectify the situation. Dr. Brain also mentioned that Vedolizimab, which is a medicine used to treat IBS, is currently being tested to see if it works to treat pouchitis.

Q. What exactly is Indeterminate Colitis?

A. Dr. Brain explained that there is a medical overlap between Crohn’s and Colitis. Crohn’s in the colon is more genetically similar to Ulcerative Colitis than it is to Crohn’s in the ileum. Sometimes doctors find it difficult to tell the difference, this is known as Indeterminate Colitis.

The presentation slides for this session can be found here: Understanding Pouch Problems (in context)

11:30 Brief Break

11:45 Surgical Team Update – Mr Bruce George: Kangaroo Club President, Colorectal Surgeon OUH NHS Foundation Trust

Mr. George began by giving us all a hypothetical scenario to think about:

Consider a 25-year-old woman with an ileostomy and a colectomy, she has continued to have problems with her rectum and does not like her ileostomy. Mr. George gave us the four options she would have.

1. Have surgery and get a pouch.

2. Get an ileo-rectal pouch, however this has the downfall of anastomosis which gives her an increased risk of rectal cancer.

3. Do nothing, although she has problems they are being managed and her life isn’t in danger.

4. Remove her rectum and give her a lifelong ileostomy.

Mr. George then gave us all a difficult question to think about.

Imagine you have a terminal illness which will kill you very soon, you are given two treatment options.

• Treatment A has a 50% chance of curing you instantly and a 50% chance of killing you on the spot.

• Treatment B gives you X amount of time in complete remission and after that time is up you die.

How long does X need to be in order for you to choose B over A? If it is 100 years you will pick B but if it is 6 seconds you would pick A.

Mr George asked us all to think about our answers and when asked to say what our answers were, they ranged from one year to 35 years. Apart from one person who said they would always take option A. Mr. George pointed out that our answers were all different, because we all have different aspirations and values. He told us that when he recently asked this question of his medical students, the answers ranged from 6 months to 50 years – with one recently married couple giving answers which were at opposite ends of the spectrum.

Mr. George went on to tell us about Nadine and Sam Montgomery, Sam was a larger baby and due to starvation of oxygen to the brain during birth he contracted cerebral palsy. Nadine took the hospital to court and won as she said she had not been told the risks of vaginal birth with larger babies and if she had been fully informed, she would have had a caesarean.

Mr. George told us that this court case has changed the way that doctors practice medicine, before this court case, doctors only needed to find one doctor who would have done something similar in a similar situation in order to not be charged with malpractice. However, now doctors and surgeons need to know what it is important for their patients and must take them into account.

Mr. George said the main factors to take into account when considering our 25-year-old hypothetical patient are:

• Bowel function

• Body image

• Risk of Cancer

• Being able to go back to work quickly

• Fertility

Mr. George told us about his patient who is a body builder with an ileostomy. His priorities were being able to get back to working out again quickly and the pictures he posts on Instagram (@blake_beckford) prove that you can have fantastic body image with an ileostomy.

Another thing to consider is the failure rate of the operation, pouch operations have a failure rate of 10-20%. How you define the failure rate depends on how you define failure but is generally defined by a need for reversal or a lack of function.

Pouch Report 2017

Mr. George then went on to summarise the Pouch Report 2017 for us.

The pouch report looked at patients who had been given pouches from 1980 to the present day. 20% of people had a complication and 25% of people had an unplanned readmission within a month of their operation. There has been a gradual increase in keyhole surgery and now about a third of people have keyhole surgery. Mr George told us that the report shows a low volume of operations done, with only 26 surgeons who did more than 15 operations per year. There were 126 surgeons who did one operation per five years and 108 of the 126 operations surveyed did less than 5 operations per year. As you might expect, the outcomes were better in hospitals with a high volume of operations.

Mr. George next went on to tell us about how pouch surgery affects fertility rates. Before having a pouch operation, patients with Ulcerative Colitis have a 20% rate of medical infertility which rises to 60% post-operation.  However, Mr George pointed out that what is important is not rates of medical infertility, but the chances of getting pregnant overall. He told us about a study done on 160 women who had undergone pouch surgery and 160 women who had undergone an appendectomy. Of the women who had pouch surgery 67% managed to get pregnant naturally and 80% were able to get pregnant overall, of the women who had appendectomies 81% were able to get pregnant naturally and 92% were able to get pregnant overall.

This shows that although fertility is impaired it is not a disaster, overall the chances of becoming pregnant per unit time are reduced and infertility is increased. Mr George told us this was because during surgery adhesions form on the fallopian tubes. It is hoped that modern surgery is going to improve this and there will be less of a chance of infertility with new techniques.

Mr. George was kind enough to answer a few questions for us.

Q. What are the advantages of Keyhole Surgery over regular surgery?

A. Mr. George said he didn’t think it added much to pouch surgery, but it depends on the surgeon. If the surgeon prefers keyhole surgery, then that is probably best.  The ideal is to get it right first time so it’s best to follow their advice.

Q. What exactly is the Koch pouch? What are its advantages? 

A. A Koch Pouch is a continent ileostomy, a pouch with valves in is made out of the bowel and it needs to be emptied with a catheter four to five times a day. It can be useful if you have weak sphincters and can work very well for some people, but it has a high need for revision surgery with a 25% to 75% need for a second operation within the first 12 months. Its advantage is that it can be done for failed pouches, and it can be done if you don’t want to have a pouch for personal reasons.

Q. What are the recent developments in pouch surgery?

A. Mr George said that the way surgery is done has changed with more people opting for keyhole surgery and the amount of blood lost during surgery has been reduced. The amount of surgeries done per year have stayed at a constant rate although there has been a slight decrease in surgeries done as a result of Crohn’s disease. The mechanics of the operation have stayed the same although people are putting it off and having an ileostomy for longer more and more. This varies with ages with 75% of patients over 50 choosing to not have a pouch and sticking with an ileostomy, however 75% of patients in their 20s and 30s choose to have pouch surgery. Mr George told us that although the technology is available for a colon transplant and it has been done for small bowels, the risk involved in transplants is too great for it to be worthwhile, since it is possible to live without a colon.

Q. What is the life expectancy of the pouch?

A. Mr. George said that the first few weeks after a pouch operation can be very tough but there is a marked improvement after a year where you have much better pouch function. After that there is a gradual decline in pouch function, but Mr George said this could be a normal decline in bowel function that happens to everyone with age. Most data shows that pouches decline after 20 to 30 years however, the first pouches were done in the 1970s so there is no data for pouches older than 50 years old.

Q. Can you tell us more about pouch surgery at the Oxford University Hospitals, NHS Foundation Trust ?

A. Most surgery is planned to take place at the Churchill, but some emergency surgeries take place at the John Radcliff. There are 6 surgeons who do gastro surgeries, three of them do pouch surgeries. The need for surgery for Crohn’s disease is more likely than for Ulcerative Colitis. The bowel cancer risk almost virtually disappears after having pouch surgery, although a small risk remains it is very unlikely.  Mr George told us that in Oxford about 25 pouch surgeries are carried out each year.

Q. In what circumstances should you go back to an ileostomy from a pouch?

A. Mr. George said that often it is obvious when you need a reversal, if you are in a huge amount of pain or you have poor function then you know you can’t carry on with a pouch. Often it comes down to a quality-of-life decision, what is going to give you the best quality of life, having a pouch or having an ileostomy? This is the patient’s choice.

Q. How do you define bad pouch function?

Mr. George stressed that once again pouch function is defined from the patient’s perspective. Although it is known that pouches with fistula’s have impaired function.

The presentation slides for this session can be found here: Surgical Team Update 2017

12:30 The Kangaroo Club Update, Including AGM – Laura Dunn

12:45 Lunch – Sandwiches, cake and fruit and an opportunity to meet and chat with other pouch owners and their supporters

13:30 A General Discussion about Diet: Q & A – with Lisa Vokes: Gastro/Intestinal Transplant Specialist Dietitian, Angie Perrin: Clinical Lead, Innovation, Salts Healthcare and Fran Woodhouse: Senior Specialist Nurse, Colorectal Nursing Team, OUH NHS Foundation Trust

Q. What should and shouldn’t patients with a pouch eat?

A. Lisa began by saying that what you should and shouldn’t eat is a personal choice, everyone is different, and some foods agree with some people but cause problems in others. This is true if you have a pouch or not. It is best to try everything and see what works for you. Lisa explained to us that a healthy diet involves one third carbs, one third fruit and veg, one sixth dairy and one sixth protein, people with a pouch should have no trouble eating this way. Although pouch patients might have to make adjustments, like eating white bread instead of brown bread, you should be able to eat the right amounts of each food group.

Q. How do you manage a weight reducing diet with a pouch?

A. Lisa said that you should be able to eat however you want to eat and if that means having a weight reducing diet you should be able to do that. As long as you eat whatever you can tolerate within the three major food groups, you can restrict your calorie intact in order to reduce weight if you need to.

Q. Is digesting food less efficient for pouch owners?

A. Lisa told us that nutritionally all absorption takes place in the small intestine and the colon recovers electrolytes, sodium and water. Although some of the ilium might be lost when the pouch is created you don’t need your whole small bowel to absorb all the nutrients you need. Lisa mentioned that pouch patients might need some extra B12 and iron but this is very individual so anyone with a pouch should check your B12 and ferritin levels yearly. Laura added to the theme of everyone being different by saying that she needed to eat extra salt and drink a large amount of water otherwise in her words, “my body becomes one big cramp”.

Q. Are pouch patients able to participate in endurance sport?

A. Lisa let us know that it should be fine if you generally eat normally, you should be able to eat as you would if you didn’t have a pouch. There is a potential that patients with a pouch might need to have electrolyte drinks more than those without a pouch, but that is the only change you might need to make.

Q. What is the Colon’s job?

A. Lisa explained that the colon’s job is hydration and hydration control, homeostasis is not possible without a colon it controls the body’s water output. This means you need to be more careful when managing your water intake. Lisa explained that if your output is particularly watery and you are going more often than normal, then you might need to take a dioralyte and drink more often. Angie said that after a certain amount of time without a working colon, the internal section of the ilium begins to look like the internal section of a colon. It adapts to absorb more fluid.

Q. What are the health impacts for a pouch owner of having a low fibre diet?

A. Lisa explained to us that the only potential health issue caused by a low fibre diet is that since you are not eating very much fruit and vegetables you might benefit from taking a multivitamin. However, yet again, this is down to the individual and patients should consult their own specific cases with their doctor.  Lisa said that there are some low fibre fruit and vegetables which can be easily incorporated into your diet and if you can contact a dietician to discuss your options further.

Q. Are people with pouches more likely to get kidney stones?

A. Fran told us that people with colorectal surgery have a higher likelihood of getting kidney stones, however again this depends on the individual.

Q. Do you recommend body cleansing through fasting?

A. Lisa told us that pouch patients are in a more vulnerable situation to people with a working colon which means it is a bad idea. Lisa told us that some of her patients who fasted during Ramadan have only had problems managing their hydration and that food intake wasn’t an issue. Lisa said that the best way to stay healthy is by eating regular meals, chewing your food very well, staying hydrated and eating little and often. Although yet again it is worth experimenting safely with your diet to work out what works for you, it is a good idea to start with the simplest changes, as they can often be the most effective.

Q. What effect does drinking alcohol have on the pouch?

A. After asking how many pints we would normally drink in one sitting (around 3) Lisa compared this with the amount she had drunk with her lunch, which was a cup of tea and a small glass of water. She explained to us that since you are drinking a much higher volume of liquid when you drink alcohol than you normally would, you are likely to get a higher output. This means that beer or cider and other alcohol which you drink a lot of might be more troublesome. Another issue which you might have with alcohol is that it stimulates the muscular contraction of the stomach which means you are more likely to have liquid output.

14:00 Break-out sessions: Groups Based on Hopes for the Day:

• Diet – For ease of reading everything captured which is relevant to Diet has been included above.

• Living with a pouch – The following was discussed:

Q. What is the best way to deal with wind?

A. This is a problem which many people in the group had, the things they recommended were buscopan tablets, peppermint oil tablets, charcoal tablets and peppermint tea. Fran and Angie added that it helps if you drink after you have eaten and not during your meal and that smoking and chewing gum can exacerbate the problem. As your pouch gets older you learn to differentiate between wind and stool better, but if you are unsure then you can lie on your stomach. This makes it impossible for you to pass stool and you should not have an issue.

Q. Can people with pouches do exercise as normal?

A. Fran and Angie both agreed that there was no reason why you shouldn’t or couldn’t do exercise if you have a pouch. You should be able to start exercise after your surgery as soon as you feel able, and gentle exercises will improve recovery. People with pouches need to be extra careful to stay hydrated and make sure that what they drink will not upset their stomachs. A few members had experienced some light bleeding when they ran a particularly long way, this is caused by the extra bouncing around internally which creates friction. Both Fran and Angie and lots of people within the group emphasized how much having a strong pelvic floor helps. There are some Pilates exercises on the website which can develop core muscles and are low impact so it does not matter what your fitness level is you can give them a go!

Q. What is and isn’t acceptable to live with? When should you go to the GP about something?

A. Fran and Angie were emphatic when they said that, if the number of times that you get up in the night to go to the loo has increased then you MUST go to your GP. Otherwise, you should consider what you normally put up with, when things begin to differ from your normal you should consider going to the GP. Fran and Angie mentioned that having blood in your stool was quite likely to be as a result of piles, since people with pouches spend more time on the loo than usual. They warned that you should be careful of straining and the group offered some helpful tips such as sitting on the rim of the toilet and not the seat or putting a stool under your feet when you are on the loo. However, if you do experience bleeding it is best to ask for a referral, since everyone is different.

Q. How does having a pouch effect how our bodies absorb drugs?

A. Pills which have a plastic coating might not be absorbed and may pass through you too quickly. It is best to let your GP know that you have a pouch as some drugs are absorbed through the colon which might be an issue. For example, the contraceptive pill might not be as effective.

Q. How helpful are GPs to pouch owners?

A. Pouches and ileostomies are very specialized subjects and GPs tend not to know much about them until they have a patient. This is why the Kangaroo Club has been set up, it provides support and help. The nurses and the clinic are always available to help and provide expert advice.

Q. What can be used to help with anal burn and itching?

A. Fran and Angie recommended using a regular and small amount of barrier cream every time you go to the toilet, but ensure you only use a small amount. Different creams suit different people but Sudocrem, piles cream and 80% Aloe Vera gel are good ones to try. Others are available on prescription. Fran and Angie suggested trying them pre-operation to harden the skin in preparation.

14:30 Brief break

14:45 Kangaroo Club Survey: Results so Far – Led by Laura Dunn 

Laura started her talk by thanking all those who have contributed to the survey. The purpose of the survey is to find out what life with a pouch is like, however as Laura explained the results have been limited by the small number of respondents.

The main thing highlighted by the survey is that everyone’s cases are so different, this means that although the Kangaroo Club can provide general advice it is no substitute for advice specific to you.

The Dates of Surgery range from 1982-2009

• 44% of correspondents having their surgery at an Oxford University Hospital and 56% elsewhere

• 22% had the pouch surgery in two stages and 78% had it in three

• 67% had no early complications, 11% had some and 22% had multiple

• 22% had no later health issues, 55% had some and 22% has multiple

• Of the immediate complications 33% had pouchitis and 2 people had a wound infection.

However, Laura pointed out that the sample is self-selecting and the people who are happy to answer questions on the topic are more likely to have a positive outcome from their surgery. The health issues reported which are associated with the original disease are:

• Pouchitis – 44%

• Iritis (inflammation of the Iris) – 22%

• Arthritis – 44%

• Fistulae – 22%

• Hernias – 22%

• None – 22%

How well you feel after your surgery seems to depend on how well/unwell you are before it.

The survey found that there was a huge variation in the diets the correspondents could tolerate. Many people said that they had no problems, but others said they couldn’t digest certain vegetables. The best illustration of this is found in two quotes about pasta:

• “pasta is my subsistence food”

• “pasta means a week off work”

This comes back to our theme of the day – everyone is different, it is best to use a process of trial and error to find what works for you. Despite the issues faced, 100% of people said that the surgery had been worth it, but as Laura stressed this is a self-selecting sample and people are more likely to respond to the survey if they are happy with it. It is important to remember that people contact patient support groups when they are in trouble, but when it is all fine, they go off into the blue and don’t contact anyone about it.

The presentation slides for this session can be found here: Kangaroo Club Survey

15:15 Question and Answer Session – with Fran Woodhouse and Angie Perrin 

Q. How can you test for infection in the stomach?

A. Fran and Angie told us that blood, breath and stool tests and scopes are all effective ways to test for a stomach infection. Stool samples are still effective, even if stool passes through people with pouches faster than ‘normal’.

Q. Do you have any recommendations for specialist physios to help with pelvic floor exercises?

A. Both Fran and Angie recommended Jane Newman, they also noted that vulnerable patients can go to the anorectal physio for strength. They also suggested paying for a short private consultation or looking on the NHS website to get yourself started with some exercises. Laura also pointed out that she has worked with her Pilates teacher to create pelvic floor exercises which are specialised for people with pouches on the Kangaroo Club website.

Q. My pouch entry is narrow and sensitive which means it can be painful when I pass wind, what is your advice?

A. Fran and Angie said it was probably because there has been a narrowing where the stoma was which is quite far along the intestine. Their best advice is to not put up with pain, it is best to have another surgery to fix the problem. In the meantime, you can avoid foods which make you windy and try buscopan to relax your muscles.

Q. What are your tips for healthy living?

A. Fran and Angie emphasised how important having a strong core is, they said that you should think of your torso as having a ‘box’ of muscles around it, which should be kept strong.  Another important tip is to ensure you sit in the correct position when you empty your pouch, you should be slightly pushed forward, and your oblique muscles should be splayed. It is also helpful if you put a stool under your feet or squat over the loo.

Q. How to I spot and then treat Pouchitis?

A. Fran and Angie said that Pouchitis is like when you had bad Ulcerative Colitis, getting up more in the night is a good indicator something is wrong. They both recommended taking a course of Ciprofloxacin or Metronizadol for a week, and then to drop down to one a day from the fifth day. Although probiotics can be used to prevent pouchitis, it will not go away on its own and should be treated sooner rather than later.

Q. Do probiotics provide any benefits?

A. Although some of their patients have benefitted from drinking probiotics, Fran and Angie said the jury is still out on probiotics. They said it made no difference to some patients while it helped others, it really depends on the individual. VSL is more effective in keeping stomachs healthy, but it is quite hard to get it prescribed and if you do it can be hard to tolerate.

Q. How often should your pouch be examined?

A.  Although there are no national guidelines, the ones written in Oxford say you should have a pouchoscopy every 3 years, but if you show signs of dysplasia then it should be increased to every year.

Q. How can you not get up twice in the night?

A. Angie and Fran said that the first thing you should do is ensure that there is nothing wrong. Once you have done this you should look at not eating past 6 or 7 pm and take your loperamide strategically. Another thing to think about is what alcohol you drink and when you drink it.

Q. Why is there so little information available to do with pouch surgery specifically the Koch pouch?

A. The Oxford University Hospitals have information available, if you would like an appointment then you should get a referral from your GP. You can call the helplines from 8. a.m. – 4 p.m. Monday to Friday for any advice you need the numbers are:

• 01865 235367 for the Churchill

• 01865 221839 for the John Radcliffe

Q. Is there a genetic link for Ulcerative Colitis?

A. Fran and Angie said that although it seems to run in families, we are unsure to what extent. There has not been enough data collected to find a definite link.

Q. Does pouch surgery lessen life expectancy?

A. Fran and Angie assured us that it should not lessen life expectancy, however complications which come from the surgery can affect your life expectancy. Although many people with pouches have long term health issues, these could be the effect of Ulcerative Colitis or the steroids that are used to treat it.

16:00 End