Inflammatory Bowel Disease (IBD)

Adalimumab | Crohn’s & Colitis UK (crohnsandcolitis.org.uk)

Azathioprine and mercaptopurine (crohnsandcolitis.org.uk)

Filgotinib for Colitis (crohnsandcolitis.org.uk)

Golimumab (crohnsandcolitis.org.uk)

Infliximab (crohnsandcolitis.org.uk)

Methotrexate (crohnsandcolitis.org.uk)

Ozanimod for Colitis (crohnsandcolitis.org.uk)

Risankizumab (crohnsandcolitis.org.uk)

Steroids (crohnsandcolitis.org.uk)

Tofacitinib (crohnsandcolitis.org.uk)

Upadacitinib (crohnsandcolitis.org.uk)

Ustekinumab (crohnsandcolitis.org.uk)

Vedolizumab (crohnsandcolitis.org.uk)

5-ASAs (Aminosalicylates) (crohnsandcolitis.org.uk)

What causes IBD: How did I get IBD and is there a cure?

The cause of IBD is unknown but there are predisposing factors to the disease such as genetics (family history of IBD), environmental factors (smoking, diet, use of anti-inflammatory medications, stress, anxiety, depression), dysregulated immune response (a breakdown in balance of immune system) and infections or bacterial factors. There is no single factor that may have caused your IBD, however it is thought that interaction among these elements may have contributed to the development of IBD.

There is currently no cure available, however we can use medicine to achieve remission of symptoms and bowel wall healing. You can also adapt lifestyle choices to help with your disease, such as management of stress and anxiety, stopping smoking, adapting diet and exercise. Surgery may be an option at some point.

What do I do if I flare in-between appointments?

There are some things that you can do to help manage your flare and you may have discussed some self-management techniques with the IBD team previously. Please refer to your last clinic letter which will contain your plan of care and self-management treatment advice.

It’s likely that we may need to complete some tests to include blood tests and a faecal calprotectin stool sample. We will want you to contact us in the event of a flare if you feel like self-management is working so we can decide the best course of action. There is a patient-initiated contact system for all patients that can be contacted via Accurx. If you have not had the link sent to you, please contact your consultant’s secretary, who can get this sent out to you.

Please bear in mind that whilst we do try to answer enquiries in a timely manner, the nature of condition means that sometimes we have to address the enquiries of the patients with the most pressing needs first and times when the nurses need to liaise with your consultant for treatment advice.

More advice on Flare symptoms and management can be found below:

Flare-ups with Crohn’s or Colitis (crohnsandcolitis.org.uk)

Who is in charge of my treatment?

You will be predominantly under the care of one of the Gastroenterologists but the treatment of your IBD is usually shared between your GP and your IBD team. Whilst we see many patients with IBD, your own GP may only have a few patients with the condition. Some GPs will potentially seek advice from the hospital IBD team when making decisions about your care, whilst others are happy to manage your current IBD symptoms at their own surgery, but we try to adopt a shared cared ethos. There is a GP tool kit provided by CCUK, link below, to assist your GP with what to do next.

Course: Inflammatory Bowel Disease Toolkit | RCGP Learning

How can I reduce my chance of having a flare?

• Take your medications as prescribed and do not stop them even if you are feeling better.

• Ensure that you have adequate supply of your medication and get your repeat prescriptions in good time.

• If you are suffering from a flare, prompt action can often prevent a flare from getting worse. If your symptoms are flaring over 48 hours then please refer to your last clinic letter for treatment escalation, if your symptoms don’t improve contact your GP or the IBD patient-initiated contact service for further advice.

• Many patients report that their symptoms of IBD worsen in stressful periods. Being mindful to stressful situations and adopting stress management techniques can be helpful.

• Try to avoid situations that could lead to a gastrointestinal infection. So, store, prepare and cook your food appropriately. Pay attention to your hand hygiene. Take appropriate precautions during foreign travel.

• Please see the web-links for more practical advice or visit Flare-ups with Crohn’s or Colitis (crohnsandcolitis.org.uk)

Can I take anti-inflammatory medications?

Medications such as ibuprofen, naproxen, diclofenac and aspirin can potentially make your IBD symptoms worse. Where possible you should avoid taking these types of anti-inflammatories as they can cause a flare up of your symptoms. 

You could try paracetamol or codeine instead for pain relief, but bear in mind that codeine can lead to constipation and should be taken cautiously. This can be discussed with your GP.

What do I do if my prescribed medication from clinic runs out?

It should be clear, when you have been prescribed the medications, if the treatment is to continue or not. If you are unsure, then please ask the IBD nurses. Your treatment plan will be on your clinic letter.

For most medications the initial prescription will be given in clinic but repeat prescriptions should be obtained from your GP. Your IBD team will request your GP to add them onto your repeat prescription.

For certain medications such as azathioprine, mercaptopurine or methotrexate (Immunosuppressants) will be initially prescribed by your IBD team for the first three months and these will always need to be dispensed via the hospital pharmacy.

You can request further prescriptions by contacting the patient-initiated contact service. Please give at least one week’s notice if a prescription is required. You may also be required to complete a blood test at the time of collection. 

Once you are stable on immunosuppressants, we will set up a shared care agreement with your GP so that they can then take over the prescription and you can collect your medication locally.

What blood tests do I need to have if I am taking azathioprine, mercaptopurine or methotrexate?

When you are started on these medications or any dose adjustments are made, you will need to have regular blood tests. These are to ensure that the medicines that you take are not affecting your kidneys, liver and bone marrow.

The schedule for blood tests are outlined below:

• First 6 weeks: Blood tests every 2 weeks
• Then Monthly blood tests for 3 months
• Routine monitoring: Blood tests every 3 months

If there are any abnormalities, you will be contacted.

What blood tests do I need if I am taking mesalazine (these include the following names: asacol/octasa, pentasa, salofalk)?

The blood tests are to ensure that the medications are not affecting your kidneys, liver and bone marrow.

• First dose: Blood test after 12 weeks
• Routine monitoring Blood tests every 12 months

If there are any abnormalities, you will be contacted.

What tests do I need to have when I am on biologics (infliximab, adalimumab, golimumab, vedolizumab, ustekinumab, tofacitinib, filgotinib, upadacitinib, ozanimod, risankizumab, mirikizumab)?

Before you start a biologic, your IBD team will ask you some questions and do some blood and stool tests to make sure it’s suitable for you. They will also make sure your vaccinations are up to date. They will also do a chest X-ray. These pre-screening tests need to be completed as soon as possible to avoid delays to your treatment.

When you are started on these medications or any dose adjustments are made, you will need to have regular blood tests. These are to ensure that the medicines that you take are not affecting your kidneys, liver and bone marrow.

The schedule for blood tests is outlined below:

• Blood tests every 2 to 3 months
• As per NICE guidelines, we will discuss and review your biologic medications in clinic annually.

If there are any abnormalities, you will be contacted.

Your blood test scheduling may change dependent on the biologic/Janus Kinase (JAK inhibitor) you have been prescribed. Treatment will be stopped if you do not comply with your blood test schedule. 

Where can I have my bloods completed?

In order for your IBD team to closely monitor your bloods, you can have your blood test taken at any of our UHL hospitals. These are open Monday to Friday, 8am to 5pm (last slot will be 4:50pm).

You can also have your blood taken at any of our community hospitals. 

You may also be able to have your bloods taken at your GP surgery, this will be down to your GP’s discretion. 

Why have I been prescribed steroids?

If you have a flare-up of Crohn’s or Colitis steroids may be prescribed for you, this will help reduce the inflammation that is causing the symptoms in your bowel. A plan will be worked out for you as to taking this mediation. If this plan is not working, you should contact the team back.

Steroids should not be used to keep you in remission. Once your symptoms are under control your doctor will aim to switch you to a different medicine.

Please do not take steroids without advice from the IBD team or your GP, Steroids are not a long-term option and can cause many other health conditions. If your IBD is not responding to your current treatment plan, then a new treatment plan can be arranged following assessments and discussions with the team.

Types of steroids

Prednisolone and methylprednisolone are standard oral steroids. They enter your bloodstream soon after you take them. This makes them useful for treating severe or more widespread flare-ups. But it also means they can affect your whole body and cause a range of side effects.

Beclometasone dipropionate (Clipper), budesonide (Entocort, Budenofalk) and budesonide-MMX (Cortiment) work a bit differently. They are oral medicines, but the steroid in them is not released until it reaches your bowel. This means they work directly on the affected area of your bowel. Very little gets into your bloodstream. So, the risk of side effects is lower than with standard oral steroids. You may see them called delayed-release or prolonged-release tablets.

Rectal steroids, which you apply to your bottom, are also designed to work on the affected area. This means they also have fewer side effects than standard oral steroids.

Intravenous steroids go straight into your bloodstream, so work much faster. You will only have these if you need urgent treatment.

More information can be found on this link: Steroids (crohnsandcolitis.org.uk)

I don’t like the idea of using a suppository or enema. Is this necessary?

Rectal treatment, suppositories or enemas, are often used to treat inflammatory bowel disease particularly if your disease just affects the left side of the large bowel.  The rectal treatments can be used alone or in combination with oral medication to treat your condition. These treatments are discussed with your consultant and form part of your personalized care.

They can be very effective in getting 100% of the drug exactly where it needs to be and can lead to faster resolution of your symptoms. 

Using them just before bedtime or after a hot shower (for example), may make them easier to use. KY lubricating gel or some water can be applied to the applicator or suppository before insertion. If your bottom is sore your GP can prescribe some gel that has a local anaesthetic in it, such as instillagel.

More help can be found at: Rectal Treatment for Inflammatory Bowel Disease (youtube.com)

I am being started on a medication and I would like more information?

All medications will be discussed with you at your clinic appointment. Crohn’s and Colitis UK’s website offers useful patient information leaflets on all medications used in IBD, the links to this site can be found here. Alternatively, you can visit https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/treatments

Are there any special diets for IBD?

You may be wondering if diet has caused your illness or can be used to treat your symptoms. There is useful information leaflet on the Crohn’s and Colitis website (a link has been provided). This includes information on a low fibre diet, low FODMAP diet and general advice for healthy eating.

You may benefit from seeing a gastro dietician to help you with this. If you live in Leicester, Leicestershire & Rutland, we are able to refer you to this service. If you are out of area, please see your GP and ask to be referred to your local dietician.

Nutrition and Dietetics – Leicestershire Partnership NHS Trust (leicspart.nhs.uk)

I would like to start a family

Most patients with Ulcerative Colitis or Crohn’s disease can expect to have a normal pregnancy and a healthy baby; however, there may be some risks. It is important for you to discuss your pregnancy plans with the hospital IBD team. It is important not to stop any medication until you have spoken to your team. 

There are also some useful information sheets on the Crohn’s and Colitis UK website 

Pregnancy and breastfeeding with Crohn’s Disease or Ulcerative Colitis (IBD) (crohnsandcolitis.org.uk)

What is a faecal calprotectin stool sample and where can I take it?

Faecal Calprotectin is a stool (poo) sample which we use to help monitor your IBD and assess whether further assessment or treatment is required.

Calprotectin is a protein secreted by the gut when it is inflamed, such as in inflammatory bowel disease (Crohn’s disease and ulcerative colitis). Calprotectin can be detected in the stool making it a useful marker for the monitoring of IBD. In other diseases where there is no inflammation, such as irritable bowel syndrome (IBS) calprotectin levels are normal.

How should I collect and store a poo (stool) sample? – NHS (www.nhs.uk)

You can collect a sample pot from your GP, or your hospital may send you one through the post. Please ensure your pot is labelled correctly and includes the date of the sample (the sample needs to be collected within 24hrs of dropping it to the GP surgery). You can take your sample to your GP surgery, as early in the mornings as possible, that will send it on to our labs for testing (the sample needs to be collected within 24hrs of dropping it to your GP surgery).