FAQs

Q: What should you do if you think you have a flare of your colitis or Crohn’s Disease?

A: Step 1: Check your symptoms, are you:

• Pooing more frequently than you normally do
• Loose poo for over 3 days
• Passing small amounts of blood from your bottom or blood in your poo
• Low energy, feeling generally unwell
• Mild abdominal pain

Step 2: Self-management advice:

Check guidance from Crohn’s Colits (CCUK) information leaflet on “flare-ups” via the link below:

• Flare-ups with Crohn’s or Colitis

This information leaflet will also advise you what to do if you take mesalazine medications for colitis and how you can self-manage these medications.

If you have no improvement after self-managing your medications, or are not on a medication you can self-manage, please move to the next step

Step 3: Arrange tests:

Please use your flare pack which includes:

• Blood tests: FBC, U&E, LFT and CRP
• Stool sample to check for any infection
• Stool sample to check inflammatory markers (Calprotectin)

If you do not have a flare pack at home, please contact the secretary team and a pack will be sent out to you.  Alternatively, you can ask you GP to complete these tests for you.

Step 4: Contact the IBD team:

Once you have used the flare pack, please contact the IBD Nurse Specialist team or your consultant’s secretary, or use the Digital Advice Line.

The digital advice line form is available to complete between Monday-Thursday, and is unavailable Friday-Sunday due to staffing capacity.

Important information:

The IBD advice line is not an emergency line. We ask all patients who are experiencing a flare and require urgent assistance to contact NHS 111 or attend your local hospital Emergency Department.

 

Q: How frequently should I have blood monitoring for my IBD medication?

This depends on your medication:

A: Mesalazine preparations

• If these are prescribed by your GP, blood tests are completed by your GP practice.

Azathioprine or mercaptopurine,

• Blood tests 2-weekly for the first 8-weeks of treatment, forms provided by IBD staff.
• Your GP will take over the prescribing and monitoring of these medications once you have completed the induction period.

Methotrexate

• Blood tests at weeks: 2, 4, 8, 12 from starting treatment.
• Your GP will take over the prescribing and monitoring of these medications once you have completed the 12-week induction period.

Biologic therapies (hospital infusions)

Loading doses:

• Blood tests prior to 1^st and 3^rd dose of treatment

Maintenance doses (for patients who do not switch to subcutaneous injectables following infusion loading doses):

• Prior to each infusion (can be completed up to 2 weeks prior to infusion)

Biologic injections (self-administered at home)

• Blood tests every month for the first 3 months of treatment, then every 6 months

Oral small molecule medication

• blood tests monthly for the first 3 months, then every 3 months.

If you need blood test forms, please contact the IBD nurse secretaries on 01603 288863.

 

Q: I have not received my home care delivery

Please contact your homecare provider in the first instance.

Homecare contact details:

Healthnet: 0800 083 3063

Lloyds Clinical: 03452636123

Sciensus homecare: 0333103949

If you are waiting for a homecare delivery but have not had monitoring blood tests taken recently, please ensure these are completed before contacting homecare.

 

Q: Pregnancy and conception advice.

A: We have a specialist maternal medicine clinic for women living with IBD and who:

• Are planning a pregnancy
• Are currently pregnant

Please contact the IBD nurse secretaries on 01603 288863 and ask to be referred to the IBD clinic.