Inflammatory Bowel Disease Frequently Asked Questions (FAQ)

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.

It’s likely that we may need to complete some tests to include blood tests and a faecal calprotectin stool sample. We would want you to contact us in the event of a flare so we can decide the best course of action. There is an advice line for all patients on 01625 661653.  Messages can be left on this answerphone. Another way of contacting us is via email on ecn-tr.MaccIBD@nhs.net. 

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 address the enquiries of the patients with the most pressing needs first.

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 defer a lot of the decision making about your care to the hospital IBD team, whilst others are happy to manage problems at their own surgery but we try to adopt a shared cared ethos. There is a GP tool kit provided by CCUK to assist your GP with what to do next.

If you are unhappy with your IBD care that you are receiving you are entitled to a second opinion. The IBD nurses or GP can help you with this if you do not want to ask your doctor.

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 contact your GP or the IBD nurse helpline 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 https://www.crohnsandcolitis.org.uk/

Can I take anti-inflammatory medications?

Medications such as ibuprofen, naproxen, diclofenac and aspirin can exacerbate IBD symptoms. Where possible you should avoid taking these types of anti-inflammatories as they can trigger a flare. 

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 and 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.

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, 6Mercaptopurine or Methotrexate will be prescribed by your IBD team and theses will always need to be dispensed via the Hospital pharmacy. You will be provided 3 monthly prescriptions and will be expected to request further prescriptions out by emailing ecn-tr.MaccIBD@nhs.net. 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.

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. 

They can be very effective in getting a high concentration 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.

I am being started on a medication and I don’t have enough information?

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.

What blood tests do I need if I am taking Mesalazine (Octasa, Pentasa, Asacol)?

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

• First month: Blood test at the end of the month
• Routine monitoring Blood tests every 12 months

If there are any abnormalities you will be contacted.

What blood tests do I need to have if I am taking Azathioprine, 6Mercaptopurine 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 month: Blood tests every week
• Second month: Blood tests at the end of the second month
• Routine monitoring: Blood tests every 3 months
• Faecal Calprotectin stool samples every 3 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)?

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:

• Blood tests every 2 - 3 months
• Faecal Calprotectin stool samples every 3 months
• Colonoscopy every 12 months
• Funding assessment every 12 months

If there are any abnormalities you will be contacted.

What tests do I need if I am taking Toficitinib?

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:

• Routine bloods at week 4
• Routine bloods and lipids at week 8
• Then blood tests every 3 months
• Faecal Calprotectin stool samples every 3 months
• Colonoscopy every 12 months
• Funding assessment every 12 months

If there are any abnormalities you will be contacted.

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 East-Cheshire, we are able to refer you to this service at Macclesfield hospital. If you are out of area, please see your GP and ask to be referred to your local dietician.

I would like to start a family. Should I be worried about my disease or medications that I take?

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 your discuss your pregnancy with the hospital IBD team. It is important not to stop any medication until you have spoken to your team.  There is also some useful information sheets on the Crohn’s and Colitis UK website https://www.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.

Can I have my bloods completed anywhere?

In order for your IBD team to monitor your bloods closely, you will need to attend within East Cheshire to get your bloods completed.

To book an appointment please telephone 01270 826400

You may also be able to have your bloods taken at your GP surgery (if in East Cheshire)  – please ask your GP about their blood service opening times

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.

You can return the completed form and the container with the stool sample to:

• The laboratory, Cooper building (1st left after entrance to Macclesfield Hospital off Victoria Road)
• Your GP (if in East Cheshire)
• Congleton War Memorial
• Knutsford Community Hospital

The sample needs to be handed in on the same day if you are able to, or the next day (if next day, to be stored in fridge overnight).