IBD specialist nursesGastroenterologySurgeryChildren and young peopleStoma ServiceResearchIBD MDTDietitian ServicePhysiotherapy
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 Colchester Hospital – Joy Mason and Kelly Turner. They provide a variety of different services designed to keep people well while ensuring they receive the best possible care and treatment. This includes:
IBD advice line
IBD advice line
Our IBD advice line is open to IBD patients who are under the care of Colchester Hospital, 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 on weekdays during office hours, and will often go through to a 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 the message left, included the best time and contact number to reach you over the next 72hours. 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.
We offer three nurse-led outpatient clinics each week, where our clinical nurse specialists can monitor patients, check their medication and carry out routine tests. The clinics 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.
Biological treatment service
Biological treatment service
Our IBD specialist nurses play a vital role in our biological service, which is available to suitable patients with moderate to severe IBD when other treatments have been unsuccessful.
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 and will then apply to commissioners for special funding to pay for the treatment before coordinating the infusions in our Gainsborough Clinic or at Clacton Hospital. There is also a home care delivery team who can help patients receive some treatments at home.
Joy and Kelly, 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.
The IBD specialist nurse service aims to supports patients who have been admitted to the hospital. This can include visiting newly-diagnosed patients to explain the condition and treatment options available, as well as making sure IBD inpatients receive test results promptly so that they can get the right treatment to allow them to return home as quickly as possible.
Supporting our patients
Supporting our patients
Our IBD clinical nurse specialists offer support to help patients to cope with the psychological impact of receiving a diagnosis, and can refer anyone who is facing specific difficulties for further support. If patients are having difficulties at work or in education, the IBD nurses can provide support for both the patient and the employer or school/university. They can write to the employer, or place of education, and help them to understand the condition and explain the steps they could take which would help.
Our nurses play an active role in the North East Essex Crohn’s and Colitis UK support group, and regularly attend its meetings to offer advice and give presentations on different aspects of the illness. They also use the meetings to gain feedback about the services offered at Colchester so that we can make sure we continue to provide the best possible care which meets the needs of our patients.
Our gastroenterology service
Our gastroenterology team are responsible for medically managing and monitoring IBD patients at Colchester Hospital, with care beginning on referral and continuing throughout their lifetime. Their aim is to help as many patients as possible into remission so that they can stay well and enjoy their normal life.
The team works closely with our IBD nurses, surgeons, dietitians and radiologists to make sure that patients receive high quality, well-coordinated care. Wherever possible, patients will remain with the same consultant throughout their lifetime so that they can benefit from continuity of care.
Patients with suspected Crohn’s disease or ulcerative colitis will be referred to our gastroenterology team by their GP. An outpatient appointment will be arranged as quickly as possible so that our consultants can hear more about the patient’s symptoms, carry out examinations and arrange tests, such as an endoscopy.
Once a diagnosis has been confirmed, our gastroenterologists will work with patients to try and get them into remission. Initially, this usually involves prescribing medication to reduce inflammation in the gut, in turn helping to relieve symptoms.
Patients may need to try more than one medication until they find the drug which is best suited to them. Our doctors will explain more about each medication during the patient’s appointment, including any potential side effects, and will also encourage them to ask any questions they may have. Our aim is to find the right treatment as quickly as possible to give patients a better chance to moving into remission.
Once a patient’s condition is under control, we will usually continue to prescribe drugs to maintain their remission and stop their condition from relapsing.
In some cases, the gastroenterologists may refer a patient to our surgeons for treatment. This can happen if medication stops working, or in young patients where surgery may be the most appropriate way to help them get well more quickly.
Our gastroenterology team is responsible for caring for IBD patients who are admitted to Colchester Hospital for urgent treatment, such as managing a fistula. They will be alerted when a patient with Crohn’s or ulcerative colitis is admitted so that they can be quickly transferred to the Langham Ward, where they will be cared for by our specialist staff alongside other patients with IBD.
As IBD is a remitting and relapsing condition, patients will remain under the care of our gastroenterology team throughout their lives. Those in remission will be asked to come for an appointment every two years, while others who are still experiencing symptoms may be invited annually. Those whose condition is still active will see their doctor more regularly.
During these appointments, the consultant will ask about the patient’s bowel movements and whether they are experiencing any abdominal pain. They may also take blood tests and stool samples to check if the disease is progressing.
Patients are encouraged to ask any questions they may have about their medication during their appointment. The clinics are held at the same time as those run by our IBD specialist nurses, which means they are also available to offer further advice whenever necessary.
The prospect of having an operation can be daunting. In this section we cover what you are likely to expect from when you and your surgeon decide you need an operation. It will cover some of the more common procedures and what to expect.
On the day of surgery
You will come to the Elective Care Centre (ECC). This is located on the first floor of the hospital opposite the canteen. Most patients are asked to come in for 7am. Your operation may be later in the day but this gives us the opportunity to re-discuss the procedure, answer any final questions, and for you to meet the rest of the surgical team that will be looking after you. It also gives us the chance to perform any blood tests or other tests before your anaesthetic. Also, on occasion, other patients on the operating list may no longer require surgery or are not fit for surgery on the planned day and they may be re-booked so the order of patients may change on the day so that is why we invite all patients in so early.
You will meet the Consultant anaesthetist and the rest of the anaesthetic team. This is the person that will be putting you to sleep and waking you up. They also are with you throughout the operation whilst you are asleep under anaesthetic making sure you are kept safe during the anaesthetic. This is your opportunity to discuss pain relief and any issues you may have had with previous anaesthetics. Then you will be escorted down to the room adjacent to the main theatre by a nurse from the elective care centre. In this room called the anaesthetic room some more checks are done by the theatre team before you are put to sleep.
We, for every patient undertake what is called the World Health Organisation (WHO) checklist and this is a world-wide improvement project that we take part in so don’t worry if you keep being asked your name and if you have any allergies- this is all part of making sure every person involved in your care can keep you as safe as possible. Once you are asleep, you will then be wheeled on your bed into the main operating theatre where the surgical team will be waiting for you.
Here at Colchester Hospital, we are a recognised centre of excellence for laparoscopic surgery and in 2009 were designated as a national laparoscopic training centre by the Department of Health. All of our surgeons are experts in laparoscopy and are also involved in training other surgeons in specialist laparoscopic techniques nationally and internationally, as well as at the ICENI centre which is our-on site post-graduate surgical training centre.
Before the advent of laparoscopic surgery (also known as keyhole surgery) patients usually had large incisions on the abdomen that were not only painful, but also meant they were in hospital longer. Laparoscopic surgery involves using a special camera and instruments that go through little holes or ports are we call them through the skin. Your surgeon is then able to operate whilst viewing the operation on a large screen.
We have been doing laparoscopic surgery here in Colchester since the 1970’s. There is overwhelming evidence that patients have less pain and recover more quickly after a laparoscopic procedure. The majority of our IBD patients will be offered a laparoscopic approach to their surgery, even when they have had previous abdominal surgery and for complex fistulating disease. There are some instances when laparoscopic surgery may not possible and your surgeon will discuss this with you. Whatever method you and your surgeon decide, the most important factor is that it is the safest procedure and approach for you.
Types of bowel surgery for IBD
We commonly talk about the large bowel and the small bowel. The small bowel connects the stomach to the large bowel. The junction where the small bowel joins the large bowel this is called the ileo-caecal junction. The large bowel then leads into the rectum and anus. It is important to know which bit of your bowel is affected as this has important implications about your recovery and what to expect after the operation.
Let’s start with the small bowel. As mentioned this connects the stomach to the large bowel. This can be affected in Crohn’s disease. Most people have between 250-800cm of small bowel with the average being about 600cm.
If there is a problem in your small bowel such as inflammation or narrowing (stricture) or less commonly where the small bowel sticks to other parts of itself (or other organs), you may need a small bowel resection. This is where the affected section is cut out to healthy ends. Usually your surgeon will be able to join the two ends together if this is a planned operation. It can take a few days for the bowel to get started after such an operation but most people are home a few days after the operation. You’ll usually have 3 small keyholes in the skin and a smaller incision through the belly-button area (about 5cm or so) where we take the cut unhealthy bowel out from.
Specifically where the small and large bowel are connected is called Ileo-colic or ileo-caecal region. Now this section of the bowel where the large and small bowel connect can be affected by both Crohn’s and Ulcerative Colitis. This area in particular can become inflamed and can narrow down as well and cause a variety of symptoms. If you and your surgeon decide it is best to remove this section it may be planned for you to have an ileo-caecal resection. This is more major surgery as this involves removing the last section of the small bowel but also the part of the large bowel that the small bowel connects to. Again if this is a planned operation your surgeon would normally plan to join the two ends together. Usually this operation involves about three keyhole incisions on your tummy and again there will be a small incision around or through the belly-button where the resected bit of bowel is removed and sent to histopathologists who review the bowel which we remove under the microscope.
Immediately after the operation you will be allowed to drink water and then energy drinks when any sickness has settled. After a few days you’ll be back to a normal diet. We would expect you to be in hospital for about 4-5 days after this operation.
Formation of a double-barrelled stoma
Formation of a double-barrelled stoma
If it isn’t possible to join the two ends of the bowel together at this operation your surgeon will decide to bring both of the ends of the bowel out. These will be brought of the skin in the lower right hand side and would be called a double-barrelled stoma as technically there are two different bits of the bowel coming out- the small bowel end and the large bowel end. But for you, there will only be one stoma bag visible. After the operation your surgeon, once you have fully recovered, will talk to you about when the two ends can be joined together. This is called a reversal of stoma and will be dealt with later on.
Now onto the large bowel – as mentioned this connects the small bowel to the rectum. Any part of this can be affected by Crohn’s disease. However in Ulcerative Colitis the entire large bowel can be inflamed but can spare the very last bit- the rectum. If you’ve had Ulcerative Colitis for many years of if there are any parts of the large bowel that cannot be passed using an endoscope (bowel camera) or if you have any growths (polyps) in the bowel that cannot be removed with an endoscope then your surgeon may recommend that parts or most of the large bowel is removed. This is called a sub-total colectomy.
This is major surgery as it involves not only a much larger amount of bowel but also usually patients have had inflammation in the bowel for some time and the bowel may not have been working well to absorb all the nutrients you normally require for some time. As a result your surgeon may want you to have input from the dietetics team and try and optimise your diet with supplements in the run up to surgery where possible. The operation itself will involve 5-6 keyholes around the abdomen.
By removing most of the large bowel two ends of the bowel are left. One end is the last bit of the small bowel (or terminal ileum) and the other end is the rectum (or rectal stump). Now depending on your personal circumstances your surgeon will probably decide to bring one of the ends out as a stoma. This will be the end of the small bowel and it is called an ileostomy.
The ileostomy or stoma will be in the lower right hand-side of your tummy.
Making the stoma allows you to recover from this major operation and usually because there is no join made in the bowel most people recover quite quickly. Once your ileostomy starts working and once you are able to care for the ileostomy yourself you will be home with help from the stoma nurses.
If you have needed a sub-total colectomy, then you may require further surgery to remove the last bit of the large bowel that is affected. As mentioned the last bit of the bowel is called the rectum. If this affected by disease sometimes medicines and enemas can help settle this down but if these fail then you and your surgeon may decide it is time to remove the rectum. This is an operation called a completion proctectomy. This operation involves removing the remaining rectum and the anus.
The ileostomy you have previously had made will remain the same. When you wake up from surgery you will have 4 keyhole scars and your original ileostomy. It can take some time to recover from this major operation but you will hopefully be used to managing your ileostomy already so once that starts to work and you are walking around the ward, you’ll be ready to go home. Again we would expect you to be in hospital for about 4-5 days.
If your operation is a planned one, then sometimes if all of your large bowel and rectum are involved, your surgeon may plan with you to remove all of the large bowel, the rectum and the anal canal at the same time. This is called a panproctocolectomy and is one of the biggest operations we do. This is major surgery and the aim here is to remove all of the bowel that is affected. After this procedure you will have an ileostomy. Although this is major surgery, most patients feel soon afterwards as the diseased bowel has been removed and patients are usually in hospital for 5-7 days.
Now for some patients they may choose to keep things as they are with a permanent ileostomy and this is fine. For others with Ulcerative Colitis, it may be possible to join the end of the small bowel (the bit that is now the ileostomy) to the anus. There are numerous ways of doing this but our preferred method is to create a small reservoir using your small bowel and join this onto the anus. The timing of this surgery is of critical importance as there are implications for fertility and bowel function so you and your surgeon will need to have met several times before deciding this is the best operation for you. You may hear terms like ileo-anal-pouch surgery or ileal-pouch anal anastomosis but to keep things simple we will call this a pouch procedure. This means joining the ileum, which is the bit of the small bowel that was the ileostomy and joining it to the anus so that eventually there is no stoma on the skin.
Again this is major surgery and is performed for quality of life, rather than a medical need. After the surgery you will have a temporary ileostomy through the site of the old ileostomy. Now this can be a bit confusing as the whole idea is to be free of a stoma and you still wake up with a stoma but we will try and explain why.
Anytime we make an internal join the most important thing is for that join to work and not leak. One factor we know helps joins heal up is if they do not have effluent or bowel content flowing over them. Now some joins like small bowel when joined to itself heal up very quickly (as in small bowel resection) so we do not need to divert the effluent from this join. However when we join the small bowel or pouch to the anus these joins can take much longer to heal. Thus we prefer to do everything possible to let this join heal by diverting the flow of waste by using a temporary stoma. In this case it would be called a loop ileostomy. This is done at the same time as the pouch procedure.
The idea of this is to divert the flow of waste into a temporary bag. Your surgeon will usual check that this join has healed by performing a camera test of the bowel and also by asking the X-ray doctors (radiologists) to put some dye through the bottom and check there is no leak a few months after the pouch surgery. Once we are sure the join is healed your surgeon will perform one final procedure called a reversal of ileostomy usually a few months after the pouch surgery.
Reversal of Ileostomy
Reversal of Ileostomy
This operation is also called a closure of ileostomy and usually carried out by cutting around the loop ileostomy and joining the small bowel back together. Your old stoma site will be sutured close and you will no longer have a stoma on the skin. In some patients it is not possible to do the operation just by cutting around the stoma and an incision may be required in the middle of your abdomen to safely reverse the ileostomy. However this is relatively rare.
After your stoma is reversed most patients will have discomfort around where the stoma site used to be for a few days and also it can take several days for the bowel to start working.
Once the bowels work, don’t be worried after your first few bowel motions. You may find that you pass blood or odd coloured liquid from the bottom, but this is normal. Things generally settle down before you go home.
Children and young people
We run a dedicated transition service to help young patients make the change from children’s to adult services at the age of 16. This sees our nurses invite teenage patients into the hospital in the run up to their birthday to look at all aspects of their general health, before focusing specifically on their IBD diagnosis and any medication or treatment they may be receiving.
Patients and their families will then be asked to come to a specialist joint gastroenterology transition clinic in the children’s outpatient department. During this appointment, they will have the opportunity to meet the adult team taking over their longer-term care and can ask any questions they may have. They will also be given the contact details for the hospital’s adult IBD nurses. The appointment aims to help to reduce any anxiety they may have about moving to adult services.
The transition service will work with teenage patients for as long as necessary while they gradually build more independence by learning how to manage their condition and cope with any side effects.
Our clinical nurse specialists in stoma care aim to help patients to live well after stoma surgery by providing them with information, education and support, as well as advice on the right products to suit their own personal circumstances.
There are two stoma clinical nurse specialists and a stoma care support nurse at Colchester Hospital. The majority of their work – around 45% – is with patients with IBD, while they also support those with cancer and incontinence.
Our stoma team will speak to every patient – which includes those having planned surgery and people brought in as emergency cases – to explain what will happen and give them the chance to ask questions. They will also tell the patient more about which type of stoma they will have, which for IBD is usually an ileostomy, which is an opening from the small intestine, or a colostomy, which is from the large bowel.
The nurses will talk about where the stoma will sit on the abdomen and mark its site, making sure they avoid any skin which has creases, scars or folds.
If a patient feels it would be helpful, our nurses can put them in touch with a peer supporter who has already had stoma surgery, who will be able to answer questions, share their own experiences and give advice and guidance.
Our nurses will visit every patient following their surgery, and offer information and support. They will visit the wards as many times as necessary to make sure patients are able to look after their stoma themselves before they go home.
The nurses will talk to patients about how often they should empty or change their pouch. They will also give advice on the products which will best suit their lifestyles so that they can continue taking part in the everyday activities they enjoy, such as swimming. As well as providing patients with stoma supplies, the team will also write to the patient’s GP to tell them which prescriptions they will need.
Before patients are discharged, our nurses will give them the details of Colostomy Association and Ileostomy and Internal Pouch Support Group, formerly known as the Ileostomy Association, depending which type of surgery they have had. They will also be signposted to the North Essex Stoma Support Group, which meets four times a year.
Patients will also be given contact details for the stoma team, and are welcome to ring during office hours on weekdays if they need extra support.
Around three weeks after they have returned home, patients will be invited back to a specialist outpatient clinic, which take place weekly in Colchester and Clacton and monthly in Harwich. They will be able to talk about how they are managing their stoma, ask for any additional advice, or experiment with different products or pouches which may better suit their lifestyle.
If patients are finding it difficult to manage, our stoma care support nurse will visit them at home as early as possible to help find solutions such as adjusting their diet, trying a different pouch or altering the waistband on their clothes.
Patients remain in the care of our stoma team for as long as necessary. The team will work closely with them to build up their confidence to help them take important steps, such as their first holiday since surgery, so that they can return to their normal life as quickly as possible.
The team will also signpost patients who need further emotional support to other organisations which could help.
The Colchester IBD centre Research 1
The Colchester IBD centre Research 2
Our research team work closely with patients and our clinicians to contribute to cutting-edge studies designed to help improve care and treatment for people with inflammatory bowel disease (IBD). They identify research projects which our hospital could take part in, bid for funding and help recruit suitable patients, as well as offering participants support throughout the study and beyond. The team also make sure the right consents are in place and that the strict ethical standards associated with all research projects are met.
We want to make sure that anyone who wishes to help with a study is able to do so, and will contact suitable patients directly to ask if they would like to take part.
We are currently contributing to three major IBD research projects. They are:
This national study is open to any patient with Crohn’s disease or ulcerative colitis. It aims to help researchers better understand the causes and progress of IBD by looking at the information carried in people’s genes so that new therapies can be developed.
We are recruiting approximately 20 people each month to take part in the study. Anyone who signs up will be asked to give a one-off blood sample, fill in a questionnaire about their health and lifestyle and be happy to be recalled to help with future research studies. Patients can withdraw from the study at any time.
Researchers hope around 25,000 patients from across the UK will take part in IBD BioResource over the coming years so that they can gather as much information as possible to help shape future treatments. For more information about the study, click here.
PANTS (Personalised Anti-TNF Therapy in Crohn’s Disease)
PANTS (Personalised Anti-TNF Therapy in Crohn’s Disease)
PANTS, which stands for Personalised Anti-TNF Therapy in Crohn’s Disease, looks at why some Crohn’s patients develop problems when they are taking anti-TNF drugs such as Infliximab and Adalimumab. This can include not responding to the medication or experiencing unpredictable and severe side effects.
Researchers hope to use the information they collect to develop a test which will predict which patients will benefit from these drugs and which will not, in turn helping clinicians to provide more individual, safe and effective care.
Nine of our patients are taking part in the three-year study. They return to the hospital every few months so that we can monitor the impact the Anti-TNF therapy is having and feed the results back to the Royal Devon and Exeter NHS Foundation Trust, which is leading the project.
For more information about the study, which runs until spring 2018, click here.
I-CARE (IBD Cancer and Serious Infections in Europe)
I-CARE (IBD Cancer and Serious Infections in Europe)
I-CARE is a Europe-wide observational study which explores whether the drugs used to treat IBD can increase the risk of developing cancer and serious infections.
Patients taking part continue with their normal care, and are asked to fill in a monthly online diary and yearly questionnaire about their condition and any hospital visits or treatment unconnected to their IBD.
We have already recruited 24 patients to take part in I-CARE, and are now aiming to sign up a further 20. Our consultants will ask you if you would like to take part in you meet the inclusion criteria.
As well as regular multi-disciplinary clinics, the Colchester IBD Centre holds monthly IBD MDTs (multi-disciplinary team meetings). This gives the opportunity for patients with IBD to have their scans reviewed by the radiologist, gastroenterologists and surgeons. Input is also given by the specialist IBD nurses and dieticians. This allows a holistic approach to patient care.
In addition, complex patients can also be discussed at a joint MDT held with the Royal London Hospital via a tele-link.
Our dietitians provide specialist advice to help patients with inflammatory bowel disease (IBD) manage their symptoms, stabilise their condition and enjoy normal, everyday activities. Two specialist gastro-surgical dietitians work at Colchester Hospital, and offer individual, tailored care with the aim of helping patients eat a healthy, varied diet which provides the right nutrition to meet their needs.
Their work covers two areas:
Our dietitians run dedicated weekly outpatient clinics for anyone who is experiencing complications with their condition. This could include:
symptoms such as loose bowel motions
They also offer basic dietary advice and guidance to newly-diagnosed patients to help them learn to self-manage their condition and identify any foods which they may not tolerate. Patients can be referred to the clinic by their GP, consultant or an IBD specialist nurse. They will be asked to complete a three-day food diary before their appointment so that our dietitians can offer advice on changes they could make which may help. Anyone who is unsure whether they need to see a dietitian can contact anyone within the IBD team or their GP for advice.
Our dietitians also work across our hospital’s gastroenterology and surgical wards, caring for patients who have experienced complications leading to an admission or who are having surgical treatment for their condition. The care they offer includes:
nutritional support and supplements for patients who are struggling to eat
dietary support to ensure that patients get the right nutrient recommendations around special diets, such as low fibre or liquid diets
The physiotherapy team is integral to the care of surgical patients in the post-operative period. Their aim is to progress patients promptly and effectively, resulting in enhanced recovery that helps patients to avoid chest infections and general overall deconditioning.
The team teaches patients ACBT (Active Cycle of Breathing Technique) and supported cough whilst encouraging early mobilization. This reduces the risk of post-operative chest infection and enables the patient to self-manage their secretions. By supporting patients with these techniques, it helps patients get better more quickly and return to independence.
Patients who have had major surgery for IBD will normally see a physiotherapist 4 times each day. This can include an exercise class aimed at enhancing recovery by engaging patients in light exercise, involving light weights, catching exercises and even some games.
Before leaving hospital, patients are given education about post-operative precautions and how to continue their rehabilitation at home. Where needed, community physiotherapy can be arranged to help the patient progress at home.
Manage Cookie Consent
To provide the best experiences, we use technologies like cookies to store and/or access device information. Consenting to these technologies will allow us to process data such as browsing behaviour or unique IDs on this site. Not consenting or withdrawing consent, may adversely affect certain features and functions.
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.
The technical storage or access that is used exclusively for statistical purposes.The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.
You must be logged in to post a comment.