Inflammatory Bowel Disease Gastroenterology Department Patient information leaflet
Royal Surrey County Hospital Gastroenterology services specialises in the care and management of patients with Inflammatory Bowel Disease (IBD). The purpose of this booklet is to introduce key members of the IBD team, how you can access appropriate support, advice, and treatment following your diagnosis of Inflammatory Bowel Disease. Ulcerative colitis (UC) and Crohns Disease are the two most common forms of IBD that affect the gastrointestinal tract. Symptoms vary from mild increases in bowel motions to a more severe increase which can be accompanied by urgency as well as bleeding from the bowel, cramping and abdominal pain. Understanding your IBD Many people with IBD find that the more they learn about their condition and how to manage it, the more they feel in control of their lives. However, everyone is different and how much information you wish to have is entirely up to you. Who gets IBD? Anyone can develop IBD - and about 250,000 people in the UK have Crohn s or UC. The illnesses can occur at any age, but often begin in younger people aged 10-40. There are up to 18,000 new cases a year. Both conditions are found worldwide, but are more common in developed countries. What are the main symptoms? IBD symptoms vary from person to person - and usually over time. IBD is a chronic (long term) disease and if you have IBD you will probably have periods of good health (remission) and then relapses or flare-ups when the symptoms get worse. 2
Symptoms may include Abdominal pain Diarrhoea (sometimes mixed with blood, especially in Ulcerative Colitis) Tiredness and fatigue Loss of appetite Weight loss Abscesses and fistulas (in Crohn s) Swollen joints, mouth ulcers and eye problems Ulcerative Colitis (UC) Ulcerative colitis causes inflammation of the large bowel, resulting in diarrhoea and rectal bleeding. Usually the rectum is affected giving the name proctitis although inflammation can extend to the splenic flexure (left side of the large bowel). This is given the name distal colitis or left sided colitis. In severe cases the whole bowel may be affected and this is called pancolitis. Inflammation is the body s reaction to injury or irritation and can also cause redness, swelling and pain. Tiny sores or ulcers develop on the bowel lining which may bleed. When inflammation occurs the bowel also can produce more mucus. The diagram below will help you understand how much of your bowel is affected. 3
Proctitis Inflammation is limited to the rectum only. For many people the main symptom is bleeding, bright red in colour and sometimes mixed with mucus. You may get diarrhoea, have normal stool motions or even have constipation. At times when the inflammation is severe you may also experience pain, urgency and soreness around the anus. Distal or Left sided Colitis This is colitis which starts at the rectum and continues up the left side of the colon. Symptoms include diarrhoea with blood and mucus, loss of appetite and sometimes pain or discomfort on the left side. Pan colitis or Total Colitis This is when UC affects most of the colon or the entire colon. The symptoms include frequent watery diarrhoea with blood and mucus. If inflammation is severe this can result in opening your bowels very frequent which would require medical attention. Who gets UC? UC affects about 1 in every 500 people in the UK. Equally affecting men and women. UC can be diagnosed at any age, but it is rare in children under five. Treatment for UC There are three main medications that are used to treat Ulcerative Colitis. Aminosalicylates also known as 5-ASA are the first line treatment for mild to moderate UC. They may be given in oral, enema or suppository form. 5-ASAs reduce inflammation and aim to maintain remission. During times of a flare or if your condition is not responding to the 5-ASA medications then steroids may be used. Steroids are given orally or intravenously through the vein should you be admitted to hospital with a severe flare of your colitis. Steroids work by reducing inflammation therefore reducing diarrhoea and bleeding. If your condition is not controlled with your medication or you require steroids more frequent then the next step would be to offer medications known as an immunosuppressant such as Azathioprine. 4
These drugs suppress inflammation over longer periods of time. All medications will be discussed with you in further detail and information provided by your Consultant or Nurse Specialist. This is just a brief introduction to the medications used. Crohns Disease Crohns Disease affects any part of the gastrointestinal tract from the mouth to the anus. It is a condition that causes inflammation of the digestive system. The inflammation extends beyond the layers of the gut and is characterised by ulcers. The most common area that are affected are the lower part of the small intestine (Terminal Ileum, the large intestine and anus. It is a condition where you will have episodes of remission and feel well and then episodes where your condition flares. It is during these flare episodes that you will need to access advice which will try to avoid an admission to hospital. It is a chronic condition as there is no cure for the illness but by using medications and sometimes surgery this can give you periods of relief from symptoms known as remission. Terminal Ileal crohns This is the most common form of crohns disease which affects the end of the small intestine and the beginning of the large bowel. Weight loss is often associated, secondary to malabsorption, and commonly deficiency of vitamin B12. You may also experience pain in your lower right side of your tummy. Colonic Crohns Crohns Colitis is when Crohns disease is only present in the large bowel. Symptoms include diarrhoea which may have blood present also. Perianal Crohns With Perianal Crohns you may develop symptoms in the anal area on its own or in combination with other sites in the body. An abscess may develop, which is a collection of pus which can cause fever, pain and lumps in the anal area. Drainage may be required or antibiotics given due to infection. Some people may develop fistulas; a fistula is a small 5
opening which forms a passageway from the anal canal (back passage) to the skin around the anus. This is normally due to an abscess and discharge from the area may be seen. Treatment for fistulae is often with medication and surgery. Sometimes Crohns is also seen in the upper small bowel, stomach and mouth. These are much less common. Who gets Crohns Disease? There has been and still is research being carried out on Crohns disease but still the cause is not yet known. Some researchers believe that it is caused by a complex interaction of genetics, abnormalities in the immune system with certain bacteria and environmental factors. Crohns Disease affects about 1 in 1,000 people in the UK. Crohns can start at any age and is more common in people that smoke than non smokers. Other information booklets specific to your condition will be given separately by your specialist nurse. The IBD Nurse Specialist The nurse specialist provides information, advice and support to you and your family on any aspect of your condition and should be your first point of contact. The nurse is able to discuss your disease and treatment options, medications, diet and lifestyle issues and point you in the direction of any other areas where support may be needed. The nurse provides a telephone advice service and the aim of this is to provide rapid access to advice should you begin to feel unwell or have signs of a flare. The IBD nurse can assess you, give advice over the phone and as appropriate make an appointment for you to be seen in the outpatient department if necessary. This is an answer phone service as the IBD nurse also runs clinics and has other duties within the hospital but all attempts will be made to return your call as soon as possible. The answer phone does inform you of the nurse s availability and gives alternative contacts if she is not available. 6
If you believe your enquiry is urgent then please do not leave a message, alternative advice via your GP or local accident and emergency should be sought as it may be more than 24 hours before your call is returned. Outpatient Clinics The outpatient departments are based in outpatients department 3 Level B and Castle Outpatients Level H. It will be in your letter sent from the hospital directing you to the department which your appointment is being held. Each consultant has a team of specialist registrars who work alongside them as well as the IBD nurse so you may be seen by any member of the team during your visits. It may be necessary for further investigations to be carried out to assess your condition, if this is the case these will be discussed with you. The aim of the appointment is to review your current symptoms and gives you the opportunity to ask any questions or discuss any concerns that you may have. When you first arrive to the unit please expect to be weighed by the outpatient staff. After each consultation your GP is fully informed of the visit and any changes to medications or examinations that have been requested a letter will be sent. You may also receive a copy of your letter for your own correspondence. If you are required to have a blood test our phlebotomy service is located within Outpatients 3 and 4 on Level B and is open Monday- Friday 8.30am 16.15pm. Should you need to cancel or reschedule an appointment please contact the appointments centre on 01483 464002. 7
Prescriptions Any new medication that is started the hospital may issue you a initial prescription but please be aware this will be for a limited time only and your GP will then be asked to kindly prescribe subsequent prescriptions. If you normally pay for your prescriptions you can obtain a prepayment certificate to help with the prescription charges. This is cost effective if you need five or more medicines within a four month period. Visit www.ppa.org.uk or call 0845 8500030 for further advice and information. If you need to take over-the-counter medicines, it is probably better to avoid ibuprofen and diclofenac. These are drugs known as NSAIDs or non-steroidal anti-inflammatory drugs, and research suggests they may trigger a flare-up. Some people may also be affected by aspirin, so for simple pain relief paracetamol may be a safer option. Smoking Smoking is not advised for many health reasons and in numerous studies, half or more of adults diagnosed with Crohn s Disease smoked at diagnosis. This suggests that people who smoke are more likely to get Crohn s than those who do not smoke. Research also shows that smoking can make Crohn s Disease worse. Smokers with Crohn s in their small bowel are more likely to have more severe symptoms, to require stronger immunosuppressant drugs, and have a poorer quality of life. This effect appears to be greater in women with Crohn s who smoke. Another study found that smokers were twice as likely to have a flare up of Crohn s when compared to non-smokers. Smokers with Crohn s in the small bowel have a greater chance of needing surgery than non-smokers. Also, for those who have already had surgery for Crohn s, the chances of needing another operation over the following few years is over twice as high in smokers. 8
If you are a smoker then it is strongly advised that you stop with appropriate and adequate support. This is one thing that you yourself can do in order to help with your disease and reduce your risk of further health conditions associated with smoking. Your nurse specialist will be able to advice you on ways to access support. Investigations During assessment and monitoring of your disease your consultant or nurse specialist may request for you to have further investigations. Listed below are the most common investigations that you may have following diagnosis. Colonoscopy A colonoscopy is a type of examination which allows a specialist doctor or nurse to look directly at the lining of the colon using a colonoscope. This is a long flexible tube, about the thickness of your little finger, with a bright light and camera at the end. You are usually given a laxative to take the day prior to the investigation in order for the bowel to be empty and allow a thorough examination. The colonoscope is inserted through the anus (back passage), and is long enough to examine the whole colon and the end of the small intestine. The specialist can check the extent and severity of any inflammation, and whether you have any narrowed areas, polyps or dysplasia. Further information on preparing for colonoscopy and what happens prior and during the examination will be given to you by the Endoscopy department. How often should I have a colonoscopy? The British Society of Gastroenterology (BSG) recommends that if you have UC or Crohn s Colitis you should have a colonoscopy about 10 years after the start of your symptoms to see whether there have been any changes in your colon. It is best to have this done when your IBD is not active. 9
The BSG also recommends that you then have follow-on colonoscopies every 1, 3 or 5 years depending on your condition, what was seen at the colonoscopy and other risk factors that will be taken into consideration. How often you will need colonoscopy surveillance will be discussed with you by your consultant or specialist nurse. Flexible Sigmoidoscopy A flexible sigmoidoscopy is an examination of the lower part of the colon. The sigmoidoscope is a 35 to 60 cm long tube about the thickness of an index finger. This is inserted though the rectum and used to examine the colon up to the splenic fixture (that is, the left side of the colon only). If you are to have a flexible sigmoidoscopy you will probably be asked to use an enema to empty the bowel before you come to the clinic, or given when you arrive. The examination itself takes about five to ten minutes, and is usually done without sedation. Because air is used to expand the colon you may feel some discomfort, but this should pass once the examination is finished. A flexible sigmoidoscopy is useful for UC or Crohn s limited to the left side of the large intestine. Small Bowel MRI This is a way to examine your bowel without using x-rays, but using MRI instead. MRI uses a very strong magnet to give detailed images of your bowel. A liquid mixture is given to you to drink to fill the small bowel so that it can be seen well on the scan. Further information on preparation for the scan and what happens after will be provided by the Radiology department. 10
Abdominal and Chest X-rays Some ordinary or plain x-rays can be helpful in the management of IBD. For example, abdominal and chest x-rays will show the pattern of gas in the intestine which can give useful information about the extent and severity of UC or Crohn s. You may also be given an abdominal x-ray if there is a concern that you have a bowel obstruction or prior to commencing certain medications. CT Scans (Computerised Tomography) A CT scanner is a special type of x-ray machine which uses a series of x-ray beams to build up a more detailed picture of the body. The scanner looks like a Polo mint or doughnut, and you lie on a moving table which slides slowly through its centre. X-rays are taken from different angles. CT scans usually take between 20 and 45 minutes, depending on the number of angles and pictures needed. CT scans are most commonly used to investigate the extent of inflammation and to look for complications such as abscesses or strictures (narrowing) in inflammatory bowel disease. Bone Density (DEXA) Scans DEXA (duel energy x-ray absorptiometry) scanners use low dose x-rays to measure bone mineral density, particularly in the lumber (lower) spine and in the upper end of the femur (thigh bone). This is a painless test which takes about 20 minutes. It shows whether bone density is normal, or reduced to a level where fractures are more likely the condition known as osteoporosis. If you have IBD you are more at risk of developing osteoporosis, especially if you have been on steroids or have low calcium levels. 11
My Consultant is: Condition: Date of Diagnosis: Medications Name of Medication Dose How often I take it Date of Investigations Date of Investigation Type of Investigation Result 12
Notes 13
Inflammatory Bowel Disease Team Gastroenterologists: Dr Michelle Gallagher 01483 571122 Ext 6990 Dr Christopher Tibbs 01483 571122 Ext 4521 Dr Charmian Banks 01483 571122 Ext 4521 Dr Kalliopi Alexandropoulou 01483 571122 Ext 4933 / 4521 Professor Aftab Ala 01483 571122 Ext 6990 Inflammatory Bowel Disease Nurse Specialist: Jenna Robinson 01483 571122 Ext 2423 Rebecca Yeates 01483 571122 Ext 2423 Inflammatory Bowel Disease Helpline: 01483 571122 Ext 2423 or email rsch.ibdnurses@nhs.net Dietician: Louise Cooper 01483 464119 Medical Day Unit 01483 571122 Ext 2424 Useful numbers Royal Surrey County Hospital 01483 571122 Outpatient Appointments 01483 571122 Ext 4002 Endoscopy bookings 01483 571122 Ext 6897 / 6445 14
Key reference sources and further information Crohns and Colitis UK Telephone: 0845 130 2233 Website: www.crohnsandcolitis.org.uk core Telephone: 0207 486 0341 Website: www.corecharity.org.uk The Ileostomy & Internal Pouch Support Group Telephone: 0800 0184 724 Website: www.iasupport.org Colostomy Association Telephone: 0118 939 1537 Website: www.colostomyassociation.org.uk NHS Smoke Free helpline: 0800 022 4 332 Website: www.smokefree.nhs.ukk You can speak to an advisor online using the smoke free online chat tool. QUIT A charity to help people stop smoking. Quitline: 0800 00 22 00 Website: www.quit.org.uk 15
Contact details Please see page 14 for contact details. RSCH IBD Patient Panel needs you Royal Surrey County Hospital has a dedicated patient panel committed to improving the services to all patients with Inflammatory Bowel Disease (IBD). We need new panel members to assist in achieving these vital improvements to benefit our patients. Make a difference and make your voice heard. Please contact rsch.ibdchair@gmail.com to find out more! PALS and Advocacy contact details Contact details of independent advocacy services can be provided by our Patient Advice and Liaison Service (PALS) who are located on the right hand side as you enter the main reception area. PALS are also your first point of contact for health related issues, questions or concerns surrounding RSCH patient services. Telephone: 01483 402757 Email: rsc-tr.pals@nhs.net Opening hours: 9.00am 3.00pm, Monday to Friday If you would like information documents in large print, on tape or in another language or form please contact PALS. Past review date: April 2017 Future review date: April 2020 Author: Samantha Summers & Jenna Robinson PIN170427 1242 Royal Surrey County Hospital NHS Foundation Trust 2017