Inflammatory Bowel Disease (IBD) Service

Inflammatory bowel disease (IBD) is generally used to describe two conditions: ulcerative colitis and Crohn’s disease. Both ulcerative colitis and Crohn’s disease are long-term, chronic conditions that involve inflammation of gastrointestinal tract, or stomach area.

Ulcerative colitis only affects the colon (large intestine), while Crohn’s disease can affect all of the digestive system, from the mouth to the anus. The symptoms of both conditions are similar, including:

  • pain, swelling or cramping in the tummy
  • recurring or bloody diarrhoea
  • weight loss
  • extreme tiredness

Not everyone has all of these symptoms, and some people may experience additional symptoms, including vomiting, anaemia and high temperature or fever. Most patients will be diagnosed with IBD with a flexible camera inserted into the bowel called flexible sigmoidoscopy or colonoscopy. This would be carried out in one of our Endoscopy Departments.

Your Care Team

If you are diagnosed with IBD, you will be under the care of a consultant. You will either be booked in to see a gastroenterologist or a specialist nurse in clinic. There is always a senior doctor in clinic if the consultant gastroenterologist is away.

Junior doctors may conduct clinic appointments and can readily obtain advice from the consultant if necessary. This is an essential part of their training to ensure we have suitably qualified and experienced doctors for the future.

IBD Specialist Nurses

Our IBD specialist nurses offer patients information, education and support about all aspects of Crohn’s disease and ulcerative colitis, including any treatments they may receive. Their aim is to help patients live well with IBD and manage their condition as successfully as possible. There are two IBD clinical nurse specialists at this Trust – Jude Tidbury and Jayne Foy. They provide a variety of different services designed to keep people well while ensuring they receive the best possible care and treatment.

We offer seven nurse-led outpatient clinics each week, where our clinical nurse specialists can monitor patients, check their medication and carry out routine tests. These clinics generally take place at the same time as a consultant clinic, so that our nurses can ask for further advice from a doctor wherever necessary.

Our nurses also run a weekly telephone clinic, for stable patients who no longer need to come to the hospital for face-to-face follow-up appointments.

We also manage a biologic service which is run by our Biologics Specialist Nurse – Sophia Bishop who assists and supports patients receiving Biologic Therapies.

The service sees special drugs called biologicals, such as infliximab and vedolizumab, given to patients by an infusion through a drip in the arm, and Adalimumab which is given via an injection usually administered at home. Our nurses will screen patients to see if they meet the criteria for these drugs. They will then apply to the local commissioners (CCG) for special funding, to pay for the treatment, before coordinating the infusions in our infusion units at Conquest Hospital or Eastbourne DGH. There is also a home care delivery team, who can help patients receive some treatments at home.

Jude, Jayne and Sophia, along with the gastroenterologists will regularly review all patients who are having biologics, either at the time of the infusion, via the telephone, or in clinics, to ensure they are making a positive difference to their condition.

My Health and Care Record (MHCR)

The IBD team is now using ‘My Health and Care Record’ (MHCR) to share information with patients.

MHCR is provided via a system known as Patients Know Best and is a secure online system where personal information relating to the care we provide can be viewed on any internet enabled device eg a desktop computer, tablet or mobile phone.

The IBD service is using the system to:

  • share information with you about your care
  • ask you to complete questionnaires about your health prior to appointments
  • signpost you to relevant resources and support
  • message the team directly and securely when you need to.

More information about MHCR, including details of how you can register and answers to some frequently asked questions, is available here.

If you do not have access to the internet or do not wish to register for MHCR, you will continue to receive information from the IBD service as you always have done.

If you have any further queries about the IBD service using MHCR, you are welcome to contact:

esht.ibd@nhs.net

Colorectal Surgery

Colorectal Surgeons specialise in surgery of the bowel. Patients with IBD sometimes require surgical treatments if, for example, medical treatments have failed to control symptoms. We try to ensure that our IBD clinics run at the same time as the colorectal clinics. You may be able to be seen by both teams at the same visit.

Only a small number of IBD patients need a stoma, where the bowel is diverted out of the abdominal wall and into bag. Where this does become necessary, stoma care nurses can give information and support before and after surgery whilst also providing education about appliances and how to care for a stoma.

Research

From time to time you may be offered the opportunity to participate in clinical research, including trials of new treatments for IBD. Currently available treatments do not always work as well as we would like, and we are constantly striving to offer better treatments and to improve our understanding of IBD. Participation in research is entirely voluntary and your normal care remains unaffected whether you take part or not. Please ask if you want to be involved in our research or if you would like more information about specific trials.

Referrals

Patients can be referred to our service via their GP.

Contact information

Our IBD advice line is open to IBD patients who are under the care of East Sussex Healthcare NHS Trust, GPs or other health professionals who have questions or concerns about any aspect of IBD, including treatment, medication, lifestyle changes and managing flare ups or relapses.

It is open weekdays during office hours, and will often go through to voicemail asking callers to leave a message giving their personal details, NHS number and an outline of their query. Our nurses will prioritise the calls and call you back. It would help if, in the message that is left, it included the best time and contact number to reach you over the next 72 hours.

Please bear in mind that the Nurse will wish to review all of your current medication, even those drugs not taken for IBD, so it would be useful to have this information to hand. If your call is of an urgent of life-threatening nature then it is essential that you also seek alternative advice. Every patient will be given the advice line number following their diagnosis.

For particular concerns related to your condition or relapse in your condition, you can contact the advice line:

07972 243347