Frequently Asked Questions (FAQs)

Inflammatory Bowel Disease (IBD) Service

The number of patients being managed within the Inflammatory Bowel Disease (IBD) service is constantly growing, resulting in a large increase in the number of contacts to the advice line.

To enable us to provide a rapid response when it is most needed (such as when you are experiencing a flare) we have developed these Frequently Asked Questions (FAQs).

These answer many Advice Line questions and relevant contacts can be found in the information provided in the FAQs. We hope this will improve our ability to answer clinical questions more efficiently and provide you with a better service.

Important - please read through these FAQ's before contacting the IBD Advice Line

It is important to read these FAQs before contacting the IBD Advice Line. Please note that we are unable to respond to queries that are already covered by these FAQs. If however, after reading these FAQs, you feel you still require help with a specific point of information, please contact us again explaining this and we will endeavour to respond.

If your query is the responsibility of another department such as pharmacy or changing a clinic appointment, endoscopy or radiology appointment – we will not be able to help with this query.

Accordion

If you are experiencing worsening symptoms, a flare of your Crohn’s disease or ulcerative colitis or possible side effects related to your IBD medications, you should contact:

Tell us what your symptoms are at the moment and confirm which medicines you are taking (this is important as it may be different to what we hold on record if you haven’t been seen in a while). An IBD specialist nurse will contact you either by email or by phone so be sure to let us have a daytime telephone number to contact you on.

Please include your hospital number (found at the top of your appointment or clinic letters) if you can but if not, you must provide your full name (do not use pet names or nicknames) and your date of birth. This is so we can access your clinical records safely. If you do not provide these details we will ask you to reply with these details which will result in a delay in receiving advice.

We will aim to respond to your query within 48 hours, in line with national IBD Standards. The IBD specialist nurses work Tuesday to Friday – 9am to 5pm; therefore, you should not expect a response to an email sent on Friday until Tuesday.

The IBD advice line is not an emergency service. If you have an urgent clinical need you should contact NHS 111 or your GP services. If you need immediate medical care you should attend your local Emergency Departent (A&E).

IBD clinic
If your appointment is in the IBD clinics at either Conquest Hospital or Eastbourne DGH, with either a doctor or a specialist nurse, contact Gastroenterology appointments:

01424 758044

Polegate/McCartney infusion unit
If you need to contact us about your infusion appointment, please call the Polegate Infusion Unit:

0300 1314500 Ext 773100 between 9am to 5pm – Monday to Friday (Excluding bank holidays)

Please note that this number should only be used for infusion unit appointments. For clinical-related queries you should contact:

email esht.ibd@nhs.net unless your query is answered in these FAQs.

Radiology/X-ray bookings
To book or check the time of your MRI scan, CT or ultrasound scan, contact the imaging team:

0300 131 4500

Please note that results cannot be obtained from the imaging departments. For information about results please see the ‘how to get results’ section.

Please note that if you miss your appointment without rescheduling you may receive a letter to say you have been discharged from our IBD service. If this happens, please contact the relevant appointments team or gastroenterology secretaries. In some instances you will be asked to arrange a new GP referral.

If you need a letter from the doctors in charge of your care, or a copy of your most recent IBD clinic letter, please contact the gastroenterology secretaries:

0300 131 5010

Please note that we are unable to provide a ‘sick note’ for your work or university. Only a GP can provide this.

To contact the medical secretaries in the gastroenterology (medical) team please contact:

0300 131 5010

Most routine medicines for IBD such as mesalazine, azathioprine (If you have been on this for three months or longer), iron or vitamin replacement should be prescribed by your GP. We are unable to prescribe medicines your GP is able to prescribe and cannot prescribe treatments which are not for your IBD.

There are some injectable medications taken at home such as adalimumab and ustekinumab which can only be prescribed by the hospital. We arrange your prescriptions with a company called Healthcare at Home. If you are running low on supply or have any delivery queries please contact Healthcare at Home:

0333 103 9499

Please make sure your blood tests are always up-to-date to avoid any delays to your prescription. (These will normally need to be done at least every three months (12 weeks) unless otherwise instructed). Please see the section about arranging blood tests.

If we have recently started you on azathioprine or mercaptopurine we will normally carry on your prescriptions until we arrange for your GP to do this (normally for about 3 months). To arrange a further prescription in these instances please ensure your blood monitoring is up-to-date, and that you confirm the dose you are taking along with any drug allergies.

Not all of our nurse specialists are able to prescribe and we may need to refer you to your consultant’s secretary. Therefore, please make sure you allow at least five working days to arrange a prescription to prevent you running out of medicine.

If you are worried about side effects of your IBD medicines, or feel you need to change or adjust current treatments, for instance because you are having a flare, please contact us:

If you have a query regarding drug compatibility or interactions, please see the Medicines Information page on our website.

Most routine blood monitoring will be arranged by your GP (for example, if you need bloods to arrange a prescription from your GP practice). If this is the case, please contact your GP practice to arrange.

If your blood tests have been organised by the hospital they can be done at the Phlebotomy department at Conquest Hospital or Eastbourne DGH, for more information visit – Phlebotomy (blood tests)

You should ensure that the tests have been ordered before attending the blood test centre. It is helpful to the blood test centre staff if you bring along the request form we have provided.

If we have asked you to provide stool samples, these can be dropped off at Conquest hospital or Eastbourne DGH Pathology department. The samples must be contained in a ‘stool pot’ which can be obtained from your GP practice if you haven’t already been provided with one from the hospital. Please ensure that you write your full name and date of birth on the sample pot (we advise you do this before you fill the sample pot). This reduces risk of the pot being incorrectly labelled and we thank you for your cooperation.

If we have specifically asked you to get in touch with us once you have undergone your blood test, colonoscopy or MRI, please contact:

Otherwise please see below.

Routine blood tests
The results of routine blood tests performed at the time of a clinic appointment are usually included at the bottom of the letter which is sent to both you and your GP a week or two after your visit. If you wish to discuss the results please do so either with your GP or contact the gastroenterology consultant via their secretaries or email:

The doctor, nurse or pharmacist who arranged the tests will review them and contact you by letter or phone if they have any significant concerns. Otherwise these results can usually be discussed with you at your next clinic visit.

Endoscopy results
The results of any endoscopy procedure will usually be discussed with you briefly before you leave the Endoscopy department and you will be provided with a copy of the report at the time. The results of biopsies taken at the time of the endoscopy will be reviewed once available but you would generally only be contacted if there is something significant which requires action.

Capsule endoscopy results
These results will not be available for several weeks after the test. The results are reviewed once available and you will be contacted directly if there are any concerns. If there is a specific reason why you would like a copy of the result then please contact the gastroenterology secretaries.

X-ray, MRI and other results
The majority of scan results can be discussed with you at your next clinic visit and do not require you to be contacted in the interim. The results of scans are reviewed once available and you will be contacted directly if there are any concerns. If there is a specific reason why you would like a copy of the result then please contact the gastroenterology secretaries.

Your GP is the best person to initially advise you about skin rashes as they treat many people with these. They will ask for our advice, or refer you to a dermatologist if they think the rash is caused by your IBD medicines.

If you are travelling abroad and need up-to-date advice regarding information specific to IBD medications, travel vaccinations, medication storage and other practical issues, please visit:

Information about travel vaccinations can also be found here:

If you are travelling with injectable biologic medication (such as ustekinumab, golimumab or adalimumab which requires refrigeration, you can obtain a variety of useful cooling travel wallets from ‘Frio Uk’. Healthcare at Home can also supply cool boxes for travel. Please contact Healthcare at Home on 0333 103 9499, extension 7050 for the travel team, who will be able to provide further advice. 

Please note that travel with your injections is taken at your own risk. If the injections are exposed to temperatures outside of the recommended storage conditions whilst travelling (2 to 8 degrees Celsius) we cannot automatically replace the injections.

If you need a travel letter to carry these medications on aeroplanes, please contact Healthcare at Home:

0333 103 9499

Please make sure you have travel insurance and have declared your IBD. Advice on travel insurance can be got from Crohn’s and Colitis UK’s information service:

0300 222 6700

Both males and females who have questions about any impact your IBD or medications may have on fertility or pregnancy can feel free to discuss it at your next clinic appointment or contact us:

If you find out you are pregnant, or are planning to become pregnant, please keep us informed so we can update your records and plan when we should review you. Patients with IBD are able to have healthy pregnancies, and the majority of IBD medications (except for methotrexate, Tofacitinib and thalidomide) are safe for you to continue during pregnancy. If you are on a biologic medicine such as infliximab or adalimumab we will make an individualised plan for your treatment throughout pregnancy.

Do not stop your medicines unless you have been told to do so by your IBD team.

It is important that you adhere to your treatment throughout pregnancy, as the risk to your baby is greater from having active disease than from the medications themselves. The aim is to keep you as well as possible to give you the best chance of having a healthy pregnancy. If you are on a biologics medication, your infant should not receive any live vaccines (such as BCG or rotavirus) for at least 6 months after birth.

You can access further information at:

If you have further questions, please let us know and we can provide individualised advice either by email or at your next clinic appointment.

You can also find useful information from the Crohn’s and Colitis UK charity website:

Crohn’s and Colitis UK also run an information line (phone or email):

0300 222 5700

They can provide general information about a range of topics including IBD and treatments, employment issues, accessing welfare benefits and finding support from others with the condition.