Information Day 2016

10:00  Coffee on arrival

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

10:40 – Drug Treatment Development for Autoimmune Diseases – Andrew Nesbitt: Field Medical Director UCB

Andrew commenced his presentation with the following key information:

• He is a scientist not a medical doctor. He has a degree in biochemistry and a PhD in cells immunology.

• UCB does not make drugs authorised for Ulcerative Colitis (UC) or Crohns disease (CD).

• All the views he expresses are strictly his own and not necessarily the views of UCB.

He then explained that biologic drugs are used for treating all types of autoimmune diseases, including:

• UC and CD

• Arthritis

• Multiple Sclerosis

These are all diseases in which the immune system attacks the body, causing swelling and problems and we don’t know why it does this – which is the biggest problem in finding a cure.

Possible reasons:

• Genetics may play a role – we know that if one identical twin gets an autoimmune disease, the other is more likely to get one.

• Bacteria may play a role.

• Environmental factors such as smoking may change the risk.

• Obesity is a risk factor in some of the diseases.

But none of the above are the whole story, just a small part. Even if you are genetically predisposed to an autoimmune disease, you won’t necessarily get it.

Different autoimmune diseases target different areas of the body, for example with UC the gut is attacked.

The Cells of the Immune System

The immune system is incredibly complicated, but there are basically two types of immune cells:

• Innate cells – those that do something

• Adaptive cells – those that produce the right response to the problem

Key Immunology Terms

• Antigens – A molecule recognised by an antibody or the adaptive part of the immune system, these are usually a protein.

• Antibodies – A protein that binds to an antigen and facilitates its clearance.

• Cytokines – These are proteins which enable cells to communicate with each other and co-ordinate immune responses. These molecules are really important and are key to us developing an immune defence and we have about 100 of them.

• Antigen Presenting Cell – These pick-up bacteria and chew it up to present back to the cells in the adaptive immune system so they can get rid of the bacteria, this is an important step in the adaptive immune response.

• Lymphocyte – These important cells can recognise and distinguish between antigens.

Organs & Tissues

There are two different types of Lymphoid Tissues:

• Primary Lymphoid Tissues – All immune cells originate in the bone marrow and T-cells are matured in the thymus.

• Secondary Lymphoid Tissues – Lymph nodes, spleen and mucosal – associated tissues – important sites for generating adaptive immune responses.

Adaptive immune responses can be as simple as when you have a cold, the glands in your neck swell.

Macrophage

These are important in the regulation of immune responses – they may function as antigen-presenting cells because they go to the site of infection and ingest foreign materials and present these to other cells of the immune system such as T-cells and B-cells.

This is an important step in the initiation of an immunological response.

T Cells

Andrew called these cells the conductor of the orchestra, they are normally divided into two different sub-groups:

• T helper cells – who produce cytokines and interact with all the other immune response cells, they are involved on the coordination and regulation of immunological responses.

• Cytotoxic T cells – these cells are involved directly in killing certain tumour cells, virus infected cells, virus-infected cells, transplant cells and sometimes parasites.

B Cells

• The major function of B lymphocytes is to develop into plasma cells which produce anti-bodies.

• Anti-bodies are specialized proteins that specifically recognise and bind to specific antigens to neutralize them, they are comprised of two chains, one heavy chain and one light chain.

Biologic Drugs

• In most cases biological treatments are made up of synthetic anti-bodies. These are much bigger than chemical drugs such as paracetamol.

• Biologic drugs are designed to bind to the target with high affinity, when the target is a cytokine the anti-body binds and neutralises the activity. They can also work by stopping a functional interaction between two cells.

• Due to their size these drugs can’t be delivered orally as the enzymes in the gut would break them down, thus they would no longer work.

• This means that biologics need to be given to patients as a solution, usually given by a subcutaneous (into the skin) injection.

• A few biologics are given by intravenous (into the vein) injection.

• This takes a number of hours and has to be administered in a hospital or medical facility.

The principle target of these biologic drugs are cytokines.

Andrew explained that in certain auto immune diseases there is an imbalance of cytokines, with there being an over production in Anti-inflammatory or Pro-inflammatory cytokines. So Anti-body drugs are created to bind to cytokines to stop them causing inflammation due to over production.

Biologics Approved in Ulcerative Colitis

These are:

• Three anti-TNFs – Remicade, Humira and Simponi.

• And one antibody which binds to an adhesion molecule – Entyvio.

Andrew then took a closer look at what the Tumour Necrosis Factor TNF-a does.

• Target of therapeutic action of the anti-TNF agents.

• The principle mediator of the acute inflammatory response.

• Primary source is macrophages.

• Mediator of inflammation, tissue destruction, and organ injury.

General Issues for Biologics

• The drugs do not cure the patients of the disease because they are treating the symptoms.

• Many patients fail one particular drug due to side effects or a reaction by the body to the drug.

• Around 25% have little or no response to these drugs.

• The cost of these drugs is around £10,000 and patients could be on these drugs for many years, meaning the drugs are hard to access.

British issues with the use of biologics

In the UK for RA you can only get an anti-TNF or other biologics if you have a Disease Activity Score of 5.2 or more.

Patients with this level of a Disease Activity Score are quite severe and all the evidence shows that there are better outcomes if patients are treated aggressively earlier in the course of the disease.

If patients fail one anti-TNF they are not allowed to have a second despite the fact that the evidence shows that the response to the second anti-TNF is only slightly lower than the first.

The Hope for the Future

Andrew described the approaches which he believes give us hope for the future.

• Approaches which target 2 molecules at once.

• Optimisation of dosing of current drugs.

• Novel targets – these are more effective and have fewer side effects.

• Replacing injected drugs with a pill to allow for easier dosage.

Lastly, Andrew emphasised how powerful the immune system is. Many of the new cancer treatments are based on ways to harness the immune system to attack tumours – this approach may also be beneficial in treating autoimmune diseases.

The presentation slides for this session can be downloaded here: Drug Treatments for Autoimmune Diseases

12:10 – The Kangaroo Club Update, Including AGM – Laura Dunn

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

13:20 – The Physiotherapist’s Viewpoint – Jane Newman: Specialist Senior Physiotherapist in Women’s and Men’s Health

Jane started her talk by saying that she wanted to make us think about our muscles and the best way to exercise them.

Our muscles support us. If we think about our body as a trunk, the pelvic floor is at the bottom, the diaphragm is at the top and deep abdominal muscles joining these together wrap around in a union jack shape. It’s these muscles which gives us shape and it is these muscles which give us core stability.

The best way to exercise these abdominal muscles is to work from within, outward.

Research on people who have had back pain showed that of those who exercised their core muscles from the inside out, only 30% had a re-occurrence of back pain, whilst of those who didn’t, the re-occurrence rate was 80%.

Strengthening these core muscles from the inside out, impacts favourably on both the back and the gut.

Ballet dancers find that if they do Pilates – which focuses on good core stability – they are less likely to be injured.

Tai Chi and Yoga, whilst coming from different backgrounds, have much the same approach to achieving core stability as Pilates.

Pelvic Floor Muscles

The pelvic floor is, “the bottom of the box”. Both men and women have a pelvic floor. It is layers of muscle around a hole.

In men the cross over is further forward than in women, at the base of the penis. For men the pelvic floor helps to give a clean finish at the end of a pee, prevents dripping and spraying and is protective of the testicles. It also helps maintain erections.

For both men and women:

• The pelvic floor ties in with sex

• Is important for continence

• It is important that it is toned, rather than strong.

Muscle tone is important for continence. There is increased pressure down on the bladder neck when we cough, sneeze, laugh etc. And our pelvic floor can kick/push up the bladder neck to stop leakages. This is especially important for men as their prostates and urethras are longer, so leakages are more of a problem.

Jane emphasised again the importance of pelvic floor tone, not strength. Because we use these muscles all the time, we need to have muscle tone – Jane used the analogy of leaving the car engine running in case you need to make a quick get away at any point.

Jane said that since muscles turn off if they are not used, we need to train then so they are ready for use at any time. She recommended we exercise our pelvic floor 3-4 times a day when we are building up our strength, then as often as possible once we have attained it.

The Oxford hospital patient guides to strengthening pelvic floor muscles for both men and women can be found here:

A guide to the pelvic floor muscles – women

A guide to the pelvic floor muscles – men

The pelvic floor has two types of actions:

• Fast actions – Such as in sex

• Slow actions – provides our main support

Continence is a mix of fast and slow actions.

Jane stressed that it is important to practice both – the more that you practice both fast and slow, actions the better.

The best way to do this is to practice little and often while thinking about muscle groups and individual muscles – this allows you to get control over your muscles and become body aware.

To practice control our control of our pelvis floor we need to practice letting it go, as well as contracting it – this is particularly important in men as it can result in pain in the pelvis if they don’t.

Digestive System Muscles

The muscles in the digestive system have involuntary movement – as they work without being told to. However, we can think about how to get them working as well as possible.

Things which impact our Digestive muscles:

• Rushing

• Stress

• Exercise

• Eating late

• Skipping meals

Jane warned us that if you skip meals then have a massive meal, this is just like not doing any exercise then doing loads all at once – it is going to hurt!

The mechanics of our digestion are driven by loads of things, so when we feel good (or bad) we can look at what makes us feel that way and avoid or do more of it!

The body is a system that likes patterns, we simply need to find the patterns that suit us.

Regular Exercise

Jane recommended that we exercise 5 to 7 days a week for half an hour a day – to push our hearts.

• As a rule, you should be out of breath but not hugely – you should still be able to talk.

• However, it is important you do not strain.

Doing this can:

• Reduce your risk of a heart attack.

• Improve your cardio-vascular health.

• Reduce the likelihood of developing dementia

• Improve recovery after surgery

Regular exercise usually makes everyone feel better, but Jane stressed that what suits one person, doesn’t necessarily suit another.

Post-Surgery Jane suggested:

• Tai Chi

• Pilates

• The Cross Trainer

To build your core strength:

• Brisk walking

• Walking up and down the stairs

• Gardening

Jane explained that Hernias are caused by a weak point in your core muscles and can develop for a number of reasons. However, if the surgery is done well then you are less likely to develop one.

Jane stressed how important it is to get your core muscles working well before building up to more intense exercise. She also mentioned that when you are exercising it is important to keep your abdomen flat – not doming.

The fitter you are before surgery the more likely you are to get back to your fitness level after surgery.

Jane emphasised that you should think about how exercise makes you feel – exercise should make you feel good, particularly that evening or the next day. If it does not make you feel good, then you should pull back and not push yourself so hard.

14:00 – Benefits of Pilates –Laura Dunn

Laura talked through the Pilates exercises on the Kangaroo Club website which can be accessed here.

14:30 – Discussion about Stress – Led by Laura Dunn, Supported by Angie Perrin: Clinical Lead, Research & Design, Salts Healthcare

Angie and Laura started by saying that we are entirely allowed to feel anxious, but they wanted to help us to find ways to deal with it. Such as:

• Concentration

• Meditation

• Mindfulness

Angie and Laura shared a few quotes:

“Excretion is a universal part of the human experience, but it is veiled in taboo. Psychologists have torn the veil off other taboos, such as sex and death, but they have largely ignored elimination.” Nick Haslam Professor of Psychology at the University of Melbourne.

“The diseases of the crude, base organs of the body which clog and soil the patients mind.” The Goncourt Brothers, Madame Gervaisais (1869)

Angie said that often people with bowel conditions, commonly patients in clinic, don’t like to talk about their problems and don’t want to talk about exactly what reconstructive bowel surgery is. This results in patients who don’t understand what their options are.

These issues are complicated however, so need to be discussed and understood.

Angie told us that often people feel a relief from sharing – ‘a problem shared is a problem halved’– which is why the Kangaroo Club is so important, it allows us to share our problems.

For her Master’s thesis Angie interviewed people with ileo-anal pouches, post-surgery. She found that there was a key trend in patients feeling isolated after surgery. One of their major issues was that people – including medical professionals – have not heard about ileo-anal pouches and there are only a few centres who deal with pouches.

As a result of this study there has been more research into chronic illnesses and two pouch nurses Angie (from Oxford) and Julia (from St Marks) wrote a research pack for nurses who care for pouch patients.

Angie and Laura shared their tips for reducing anxiety

• Physical exercise – which Jane had already stressed the importance of in her earlier talk. It also increases endorphins and reduces stress.

• Meditation and Mindfulness – this involves making a special effort to give your full attention to what is happening in the present moment with your body, mind or surroundings, in a non-judgemental way. The idea is that we become more aware of our thoughts and feelings and react differently to them.

• Talking – as Angie said earlier ‘a problem shared is a problem halved’, you very rarely feel worse after talking about something and almost always feel much better.

• Accepting things that you cannot change – much easier said than done, but if you don’t worry about things that you can’t change, then you will be worrying about a lot less!

Angie and Laura shared several helpful leaflets and resources which are linked to below:

Go Your Crohn Way – one woman’s story about living with Crohn’s disease

Everybody Poos – to try to remove the taboo with children

They left us with the advice that the wonderful thing about growing older is that your friends also become older and are therefore more likely to have been ill at some stage – so they will understand better what you are going through!

The presentation slides for this session can be downloaded here: Talking About Anxiety

15:00 – Break Out Groups:

• Practical Pilates

• Sport and a Healthy Lifestyle

• Diet

15:30 – Question and Answer Session – Simon Turley and Fran Woodhouse: Advanced Nurse Practitioners, Colorectal Nursing Team, OUH NHS Foundation Trust

We began with an update from the surgical team.

On 30th November 2015 Professor Mortensen retired, a new consultant has now been appointed but they are currently practicing in Scotland.

Oxford is still a centre for pouch surgery, with St Marks Hospital and the Oxford Radcliffe Hospitals, NHS Trust both offering nurse led clinics. However, referral is needed from your GP, or in-hospital colorectal unit, if you are not an Oxford patient, but wish to attend the Oxford nurse led clinic.

We them moved onto the questions asked by the audience.

Q: If you have had your bowel removed (as a result of UC)

1. Are you still classed as having UC?

2. If so, why are we never offered/given a Flu Jab since it is an auto-immune disease?

A: Once you have had your bowel removed through pouch surgery or having an ileostomy, you are not still classed as having UC. Therefore, you are not offered a Flu Jab for the pouch, but if you are trying to get insurance they will ask questions about UC.

Q: How often should you have a pouchoscopy/pouch inspected? And should you have a general anesthetic, sedation or nothing?

A: If you have had a diagnosis of UC for more than 10 years, then you should have your pouch looked at every 3 years or more.

If you have been diagnosed with Cancer, Dysplasia, or FAP then it should be checked yearly.

Regarding general anesthetic versus sedation or nothing, this depends on your pain threshold and who is performing it. If someone is very used to doing the procedure, then it will be done with less pain than if they don’t do it often.

Q: What should we be concerned about finding in our stool?

A: Blood is almost always a concern, if it is only a small amount of blood then it might just be from straining or inflammation in the anal canal.

If it is fresh blood, it is likely to be from the bottom end and be caused by haemorrhoids, fissures or pouchitis. If its old dark blood, then it is likely to be from higher up in the duodenal tract and could be caused by an ulcer.

You should seek medical assistance if it persists.

Q: Is it worth being screened for colon cancer when you have a pouch and annual check-ups with the colorectal team?

A: It is still possible to get colon cancer once you have had your colon removed, this is due to the retained cuff which can develop cancer. The length of the cuff can vary depending on your anatomy or the surgical technique used. It wouldn’t hurt to do the screening.

Q: Are there any creams or other products provided for people with pouches?

A: There are a few creams out there and you should try a few to find out which works for you. A specific cream mentioned was Comfeel Barrier Cream by Coloplast – it was advised that you should not use too much.

Q: Does anyone have an alternative that works, to Imodium, Lomotil or Codeine Phosphate?

A: Lomotil and Loperamide are the two which are recommended the most highly and it depends on pouch function which one is recommended.

Q: Is the 5:2 diet compatible with pouch owners, particularly over the long-term?

A: The main eating advice for pouch owners is to eat regular meals and keep your fluids up, this advice applies to whatever diet you follow such as the 5:2 or any other diet you wish to follow.

16:00               End

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