Inflammatory Bowel Disease

There is an increased risk of bacterial infections such as salmonella and listeria, leading to gastroenteritis (food poisoning). You can try to reduce the risks by using good food hygiene, e.g. hand washing before preparing food, after going to the toilet and after touching raw meat. Also washing your fruit and vegetables. Keeping raw and cooked meat on separate shelves in the fridge etc.

Also try to avoid:

• Raw eggs, so fresh mayonnaise, hollandaise sauce, eggnog
• Unpasteurized milk and cheese, this includes most soft cheeses
• Insufficiently cooked or raw meat, poultry or fish.

Seek specialist travel advice if intending to go to a developing country, your GP surgery should run a service. You need to take special precautions especially if you are being treated with an immune suppressant drug. 

Crohns and Colitis UK has a very comprehensive advice leaflet about travelling with IBD that you can access via their website and/or there is another website offering travel advice specifically for IBD patients it can be found at ibdpassport.com

If you are a smoker, stopping smoking is one of the best things you can do to help your Crohn’s disease, your risks of needing surgery are up to 3 times higher if you smoke! Your GP/practice nurse can advise you of the many different tools now available to stop smoking.

Ladies, there is a very slight increased occurrence of HPV (Human Pappiloma Virus), a sexually transmitted disease. Certain strains are linked with an increased risk of cervical cancer.  So using a barrier contraceptive is always advised, even when on other birth control methods. And it is also strongly recommended that you attend for cervical smear tests when requested by your GP, plus if in the age bracket attend for HPV vaccination when requested.

Another point to note on oral contraception is that if your disease is active and you’re having a lot of diarrhoea, you may not absorb all of your medication and so it may not be as effective, so you should use a barrier contraceptive during these times as well or talk to your GP about other options such as a coil or implant.

Try to follow the government’s advice on leading a healthy lifestyle, i.e. get your 5 a day of fruit and vegetables and try to do 30minutes of moderate exercise 5 times a week. There are no specific dietary guidelines for IBD, (unless you have a stricture), you may find that certain foods trigger symptoms and so try to avoid these. 

It is important though that you get a healthy balanced diet as being malnourished makes you more prone to infections and also makes it harder for you to cope with a flare up. 

You can find more information on Crohns and Colitis UK as they have a very good booklet entitled ‘Food and IBD’, that you can order free of charge.

If you have general questions about how to manage a certain symptom for example bloating or constipation or want to know a little more about a medication, please first look at the wealth of patient information available on Crohn’s and Colitis UK.

If you then have further questions or are having difficulties with your IBD the first people to contact about your condition are the specialist nurses via the

IBD Advice line: 01905 760732

Email: [email protected]

The advice line is an answer phone service only, is open Monday to Friday 8am-12 noon. Outside these hours you will not be able to leave a message. We are closed on weekends and bank holidays. The last messages are taken off on a Friday morning any messages left after this will be picked up the following week. We aim to get back to urgent calls within two working days anything non urgent four working days.

This service is not for emergencies, for that you should contact your GP or NHS 111. 

You can contact us for anything directly connected to your condition, (apart from rebooking/cancelling appointments etc this should be done via the booking office).

For example,

1. If you are worried about symptoms and think you are having a flare up of your disease, you should not wait for your next appointment unless it is within a week or two, flare ups are best treated quickly!
2. If you would like more information on a prescribed drug or feel you may be getting some side effects.  Please always contact us first if you want to stop a drug or change the dosage, even if you have been well for some time.
3. If you are planning a pregnancy or fall pregnant and want advice on medications.

Other organisations you may find useful are:

Crohns and Colitis UK  - www.crohnsandcolitis.org.uk

This is one of the best websites for patient support and information, it has a large number of information leaflets you can download covering symptom management, medication information plus advice on disability/PIP etc.  It also has forums and facebook forums etc.

BSG – British Society of Gastroenterology - www.bsg.org.uk

CORE charity - www.corecharity.org.uk

CICRA – Crohn’s In Childhood Research Association - www.cicra.org.uk

NHS choices - www.nhs.uk

You can get a wealth of information from the internet, but the quality and evidence base can vary immensely. The above websites are ones that we would recommend.

Being diagnosed with a chronic disease (long term condition), can be quite scary and you may worry how you will cope with it on a day-to-day basis. You may have questions of an intimate nature or feel silly voicing certain questions/concerns.

Don’t be. The IBD team is here to help you, and you can always contact the specialist nurses for advice. Chances are we’ll have heard it before and you won’t be the only person ever to feel like that, so ask away.

Positive mental wellbeing does not mean that you never experience feelings or situations that you find difficult, but it does mean that you feel you have the resilience to cope when times are tougher than usual. Feelings of contentment, enjoyment, confidence and engagement with the world are all a part of mental wellbeing. Self-esteem and self-confidence are, too.

It can help to think about "being well" as something you do, rather than something you are.

Evidence suggests there are five steps we can all take to improve our mental wellbeing. The ‘Five ways to wellbeing’ have been identified through extensive reviews of research and expert opinion as simple actions that anyone can take that will have a positive impact on their day-to-day wellbeing.

If you give them a try, you may feel happier, more positive and able to get the most from life. This is about building a stable foundation which will make it easier to buffer the other challenges that life throws at us.

Small changes can make a big difference. Building just five actions into our daily lives can increase wellbeing. This is all about taking action to make change – the more you put in, the more you are likely to get out. Planning and preparation is key, so remember to use a diary to schedule planned activities and involve your friends and family. In planning your time, you will take an active role in managing your wellbeing and lifting your mood. This will help you to do more of the things you want to, in addition to the things that you have to do.

HEALTHY MINDS

Worcestershire Healthy Minds supports people, aged 16 and over, who are experiencing problems such as stress, anxiety, low mood and depression. They help people improve their mental wellbeing through a range of interventions such as short courses, talking therapies, and self-help information.

Phone – 03000135727

https://www.healthyminds.whct.nhs.uk/

CROHN’S & COLITIS UK

https://crohnsandcolitis.org.uk/info-support/support-for-you/wellbeing-support

If you struggle with managing stress or anxiety there is a useful website full of hints/tips and self-help advice. Just type in www.nhs.uk/mental-health/

There is an App that you can download on your smart phone from either Google play or the App store. You can search for “My IBD Care”.

The App can help you in several ways, you can –

• Build your personal health record
• Set up reminders for your medications and appointments
• Find ways to take back control – find practical advice, tactics and the latest research
• Improve your lifestyle and wellbeing through symptom monitoring tools and courses

As previously stated, you are more at risk of certain infections/diseases or if you contract them may suffer more severely; this is due to a faulty immune response in people with IBD. It is very important that you had all of the normal childhood vaccinations and are up to date with any boosters due. If you are unsure about this, please talk to your GP.

There is an increased risk of DVT, Deep Vein Thrombosis, (a blood clot in a vein). You may have heard about these in relation to air travel. It has been found that even in remission IBD patients have a very slightly higher risk, but this increases further during an active flare up of disease.

Signs to be aware of:

• Swelling in a limb, usually the lower leg, that is tender to touch and is often warmer and harder than usual.
• Sudden shortness of breath or sharp chest pain especially on breathing may be a sign of a clot in the veins supplying the lungs.
• If you get any of these signs you should inform your GP or an out of hours’ service as soon as possible.

Prevention:

You can reduce the risk during a flare up by keeping mobile and wearing DVT stockings or flight socks that you can purchase at any pharmacy. N.B Women using a combined contraceptive pill or implant should discuss the increased risk of DVT with their GP.

People with IBD have a 20-50% chance of getting osteoporosis (thinning of the bones). Your risk is increased with age, prolonged steroid treatment, low physical activity, BMI <20 (Body Mass Index) or a weight less than 40kg, smoking, inflammatory cytokines (as found in active IBD), post menopause or those who had an early menopause.

What can you do? 

If you ever need a course of steroids, you should always receive a prescription for calcium supplements as well such as Calci-D. If you do not, then please advise/remind the prescriber of this requirement or contact the helpline so we can arrange this for you.

You need to ensure you are getting enough calcium and vitamin D in your diet. Over 1 gram of calcium daily is recommended, slightly higher if you are over 55years old or post menopause.

Calcium is in, Dairy products, like milk, yoghurt and cheese (or soy equivalents), Tinned sardines or pilchards, beans, nuts, dried fruits, spinach and broccoli, white bread.

Vitamin D is in, margarine, cereal, oily fish, egg yolks, liver, red meat. You can also decrease your risk by stopping smoking, avoiding alcohol excess and taking adequate weight bearing exercise, this can be as easy as walking, gardening, taking the stairs or even housework.

This is only a brief overview of osteoporosis, for more information you can look at the website:  www.theros.org.uk. If you have any other concerns and would like more advice you should contact your GP. 

There is some emerging evidence that low levels of Vitamin D may play a role in making your IBD worse, we don’t know why this might be at present.  It is therefore important to ensure you are taking in oral sources from food as mentioned above.

From October to end of March you will not get enough sunlight in the UK to convert Vitamin D that you eat in food.  Therefore, it is recommended for everyone in the UK to take a Vitamin D supplement during these months of 10ug a day or 400 IU.

1. Read the CCUK flare-ups document: https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/symptoms/flare-ups
2. Please call and leave a message on the IBD Helpline.

1. Please write your full name, date of birth and NHS/hospital number AND date of sample on the tube label.
2. It is important that your stool sample does not touch the toilet water or urine. Ideally it should be the first bowel movement of the day. There are different ways to collect your sample, try several layers of folded toilet paper, hand inside a small plastic bag/glove, a clean disposable container. You may find a way that is easier for you, but make sure you catch your stool sample before it touches the water.
3. Using the scoop attached to the cap of the collection container, place some of the remaining sample into the container until it is around a third full (do not overfill the container). Once collected twist the cap clockwise to close securely.
4. Please place your sample in the specimen bag (if provided), and seal. Please return it to your local surgery (unless advised otherwise by your GP) with the request form, within 24 hours. From here your sample will be sent to the laboratory by routine Pathology transport.

Please look at the medication on CCUK https://www.crohnsandcolitis.org.uk/  please look at the risks, benefits and possible side effects of this medication and await your clinic appointment to discuss and start.

If you do not have a clinic appointment, or feel you cannot wait until that appointment please leave a message on the IBD Helpline.

Please call the department direct to change your appointment, please see useful contact information below.

A normal healthy, balanced diet is recommended unless told otherwise please go to CCUK https://www.crohnsandcolitis.org.uk/ for more information.