Inflammatory bowel disease (IBD) PIFU

What is patient-initiated follow-up?

Patient initiated follow-up (PIFU) puts you in control of your follow-up appointment. Instead of being offered regular visits, you can make an appointment to see us if you have worries or concerns following your consultation about your condition.

You will be given ‘open access’ to the clinic for a period of 36 months from the date of your outpatient appointment. That means that if you are concerned about your IBD or your medication, you can contact us, and you will receive a telephone or face-to-face consultation within six weeks.

The reason we offer follow-up this way is because most patients do not benefit from having a regular outpatient follow-up and many patients find the follow-up visits to the hospital cause a lot of anxiety and unnecessary disruption for themselves. By offering appointment bookings in this way, we hope to be able to offer you a consultation in the way most suitable for you.

What should I expect?

After your appointment with the IBD clinical nurse specialist, you may not need to have regular scheduled appointments at the hospital. In some specific cases your consultant may book you for further procedures or want to see you in their clinic personally to discuss potential further treatments or tests that you may need. If this is the case, you will already have been told about this and an appointment letter will be sent to you in the post and will be on the Patient Portal.

When to book an appointment

A follow up appointment can be activated if you have ongoing concerns about your condition if your condition changes significantly beyond what is expected or if you need further information or clinical input that cannot be met by your GP. A relapse or exacerbation of IBD is often called a ‘flare’. If your bowel habits begin to change, it may be that IBD has become active.

Points to notice

• Has your bowel frequency/stoma output changed (increased or reduced in volume) significantly?
• Are stools loose or have you had diarrhoea with blood or a slimy substance for more than three days?
• Have you had abdominal pain?
• Are you waking at night with symptoms?

If yes, you should contact your GP or IBD nurse as soon as possible.

Step one: is this an emergency?

If you have any of the following symptoms, please contact NHS 111 or attend your local emergency department:

• fever (a temperature above 37.5 °C)
• severe abdominal pain
• vomiting
• no bowel motions/stoma output for three days or more

Step two: easy tests

Blood tests

Contact your GP or IBD nurse specialist to organise bloods tests for full blood count, liver function, urea and electrolytes, and inflammatory markers (ESR and C-RP). Blood tests are used to determine an IBD relapse and help to decide on best treatment options.

Stool tests

Microscopy, culture and sensitivity (MC and S) bacterial stool tests will be sent to the laboratory to test for any markers of infection. Faecal calprotectin stool tests will be sent to check for any inflammation in the gastrointestinal tract. Did you know having IBD increase the risk of developing infections in your gut? A stool sample for MC and S can help detect this. In some cases, there may be other causes for your symptoms other than IBD. Calprotectin is a protein released in your gut during a relapse/flare, and so can be an indicator when intestinal inflammation is present.

Step three: current medicines

The dose for mesalazine based medicines can be increased during a flare. There are a number of different brands of Mesalazine and each has a different mechanism, as they are released differently in the bowel.

The nurse at the clinic will discuss the medication with you that you can use when you have a flare up – this is highlighted in this leaflet

Do not increase other medications you may be taking, such as azathioprine,  mercaptopurine or methotrexate.

Key:

• g – grams
• mg – milligram

If symptoms settle using ‘flare dose’ then after six to eight weeks reduce back to ‘maintenance dose’.

Rectal therapy – mesalazine suppositories and enemas

If you are familiar with using these, it is safe to start every night for two weeks to help improve symptoms. If symptoms do not improve within one to two weeks, please contact your IBD nurse.

Steroids (prednisolone / budesonide / beclomethasone)

Please note these medications are not recommended as long-term treatment, these are mostly used when IBD symptoms have not responded to current therapy. If you are prescribed this by the GP for your IBD please inform team.

Current treatments for IBD are designed to prevent the need for steroid treatment and side effects associated with this medication. Steroid treatment must not be stopped     abruptly.

Step four: telephone the IBD advice line

Royal Free Hospital

• Tel: 020 7830 2283 (voicemail service open Monday to Friday, 9am-5pm).
• Email: rf.ibdnurses@nhs.net

Please provide your full name, date of birth, contact number, and hospital (MRN) number if known with a brief message. We aim to respond within 48 hours - please note this should not be used in an emergency. In an emergency, please contact NHS 111 or attend your local emergency department.

How to book an appointment

Please email rf.ibdnurses@nhs.net stating that you are on the PIFU pathway with a brief outline of your problem leaving your name, date of birth and hospital number. If you do not have email access, please contact our IBD advice line on 020 7830 2283.

The hospital will send you a confirmation letter with the date and time of the appointment in the post and it will be on the Patient Portal. This ‘open invitation’ is for 36 months following your appointment unless specified otherwise.