Ulcerative Colitis
Ulcerative Colitis
This leaflet tells you about the condition known as ulcerative colitis. It explains what is involved, and the common complications associated with this condition. It is not meant to replace discussion between you and your doctor, but merely as a guide during discussions.
What is it?
Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In ulcerative colitis, tiny ulcers develop on the surface of the lining which may bleed. The inflammation usually begins in the rectum and lower colon, but it may affect the entire colon. If ulcerative colitis only affects the rectum, it is called proctitis, if it affects the whole colon it may be called total colitis or pancolitis.
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What are the symptoms?
Ulcerative colitis is described as a chronic condition. This means that it is on-going and life-long, although you may have long periods of good health (remission), as well as times when your symptoms are more active (relapses or flare-ups).
Symptoms may include:
▪ Frequent and urgent need to pass blood and mucus (slime from your back passage) there may also be some stools as well
▪ Diarrhoea
▪ Abdominal pain, often just before a stool is passed
▪ A general feeling of tiredness and feeling unwell
▪ Loss of appetite and weight loss
▪ Anaemia which can make you feel tired
Occasionally other symptoms occur and these may include reddening of the eyes, joint pain, skin lesions, growth impairment in children, irritability, depression & fatigue. Very occasionally when the disease has affected the whole of the large bowel for more than ten years, bowel cancer may develop. You will be offered regular screening at around 10 years in order to survey the bowel and check for any abnormalities.
How is ulcerative colitis diagnosed?
To make a diagnosis of ulcerative colitis you will have blood tests, a stool specimen called a faecal calprotectin and it is essential to examine the back passage and colon with a lighted tube. It may be a short tube (sigmoidoscope) or a longer soft tube (colonoscope) this allows direct examination of the lining of the bowel. The procedure may be carried out under sedation.
Often a small sample of tissue (biopsy) is taken from the lining of the bowel for laboratory examination. This is painless. Your doctor may want to do other tests on the basis of the findings of the initial examinations.
Are other parts of the body affected?
• Mouth ulcers are common
Less commonly (rarely):
• The skin may be affected with warm, red tender lumps (erythema nodosum) or, very rarely, ulceration (pyoderma) usually on the legs.
• Pain and swelling may occur in the joints, lower back or stiffening in the spine.
Inflammation may also rarely involve the liver, bile ducts or eyes. Children with severe disease may grow at a reduced rate.
Why do I have ulcerative Colitis?
No one knows why particular people develop ulcerative colitis but research has identified some tendencies of the disease:
▪ It affects both men and women and can occur and any age, but often begins in the teenage years.
▪ It occurs most frequently amongst Western European and North American people
▪ There is a small increased risk that close relatives of patients may suffer from the illness more commonly than the rest of the population.
▪ Stressful, emotional events are occasionally linked with the onset of the disease or recurrence of symptoms.
▪ Allergy may play a part
What causes the disease to relapse and a return of symptoms?
Normally, there is no obvious cause for a relapse. In a few cases a triggering event can be identified – this is not the cause of the disease. For example:
▪ Personal stress or worry
▪ Common infections (colds, flu, gastro-enteritis)
▪ Some drugs (e.g. antibiotics, aspirin and anti-arthritis drugs)
Do I need a special diet?
Most patients can eat a full normal diet. Some foods may make diarrhoea worse and are best avoided. Some Patients who have had surgery may need a special diet and children who have the disease may also need a special diet. Generally, the most important thing is to eat a nutritious and balanced diet to maintain your weight and strength, and to drink sufficient fluids to stop you getting dehydrated.
How is it treated?
For most patients the disease can be controlled by using medication. It can be cured by surgical removal of the large bowel.
5asa medications ( mesalazines) are used to treat mild/ moderate ulcerative colitis. They are available in suppositories, enemas, granules or tablets. They have few side effects and are usually well tolerated.
Steroids are often prescribed for moderate to severe attacks of ulcerative colitis to dampen the inflammation. These steroids are not the same as those taken illegally by athletes. Their side effects may include increased appetite, moodiness and puffiness of the face. These changes may well disappear when the steroid treatment stops. Once the disease is controlled the dose is reduced and then stopped. Steroids may be given as tablets by mouth, enemas, rectal foams or suppositories via the back passage. Severe attacks will be treated in hospital with steroids given via a vein into the blood stream.
Immunosuppressants ( azathioprine/mercaptopurine) these are second line ,steroid sparing agents. Potentially they have some significant side effects and require careful monitoring and regular blood tests.
Biologics
There are currently 5 biological therapies available to treat severe Ulcerative Colitis. These drugs require careful monitoring. They can be administered either in hospital or at home.
When is surgery necessary?
With ulcerative colitis most people never need an operation. The colon may have to be removed if:
▪ A very severe flare up fails to respond to intensive medical treatment
▪ Repeated flares cause ill-health
▪ Pre-cancerous changes are found in the colon
What operations are available?
There are several operations available for the surgical treatment of ulcerative colitis; all involve removal of the large bowel.
A proctocolectomy and pouch formation - The entire large bowel is removed and the rectum is replaced with a pouch formed from small bowel. The pouch is made from a segment of the small bowel and joined to the anus. This operation may be carried out in stages. With formation of the pouch, the small bowel may be rested by formation of a stoma or bag (ileostomy), which comes out on the tummy. When the pouch has healed the stoma is closed.
Colectomy and ileostomy - This is a more straightforward procedure that involves removal of the large bowel and formation of a stoma or bag from the small bowel that is brought out onto the tummy. This may be done including removal of the rectum at the same time. The complications from this procedure are less than the pouch but means the stoma or bag (ileostomy) is permanent. Often most of the large bowel may be removed but not the rectum.
This is especially so in the case of needing an urgent operation. This gives the option of considering formation of a pouch or removal of the rectum at a later date.
Specialist nurses train the patient in how to care for the ileostomy. The ileostomy bag lies flat on the abdomen. It does not show even through bathing costumes. It should not interfere with any activities, including sexual intercourse.
Laparoscopy - Some of the operations outlined above, including pouch surgery, may now be carried out using laparoscopy (minimally invasive surgery). This is also known as ‘keyhole surgery’. Instead of making one large opening in the wall of the abdomen, the surgeon makes four or five small incisions (cuts) each only about 1cm (half an inch) long. Small tubes are passed through these incisions including a laparoscope (which is a thin tube containing a light and a camera) is used along with small surgical instruments to perform the operation.
Laparoscopic operations tend to take longer than ‘open’ surgery, but can have a number of advantages, such as:
• less pain after the operation
• smaller scars
• faster recovery
• a shorter stay in hospital
Laparoscopic surgery may also not be suitable / possible to perform for some patients particularly those who are overweight or who have had previous operations.
No operation is perfect. Each has advantages and disadvantages. In each case the choice of operation has to be made on an individual basis by the patient and the surgeon. Although it is a big step to have an operation, it does mean that ulcerative colitis is cured permanently.
Patients who are ill enough to need surgery usually notice a great improvement in their general health after the operation. However, some may have to take medication to reduce frequent bowel movement.
What are the risks associated with surgery?
As with all surgery there complications can occur. Some are general and can happen in any surgery. This includes chest infections, clots in the leg, wound infection. Some complications are more specific to the operation and include wound infection, abscesses and leak from the pouch.
Complications are uncommon and usually occur in less than 10% of cases. If you have pouch surgery or the whole bowel is removed there may also be a risk of impotence because damage can occur to nerves that supply sexual organs. The risk is usually less than 4%.
Complications are usually rapidly recognised by the nursing or medical staff. If you are concerned about anything please ask.
Occasionally patient die from major operations - The risk is less than 4% in planned cases and does also depend on your age as well as general health.
What are the benefits associated with surgery?
Surgery usually means a cure of the ulcerative colitis.
What are the alternatives?
A variety of medical treatment options are available and are usually tried before considering surgery.
What are the consequences of treatment?
80-90% of people are very happy or satisfied with the outcomes. In about 5% of cases complications or poor pouch function necessitates an ileostomy.
Side effects from medical treatment may occur. This can be discussed with your doctor. Surgery will mean changes to your body and bowel behaviour depending on the type of surgery considered. This can be discussed with your surgeon further.
Pregnancy and colitis
Most women with ulcerative colitis can expect a normal pregnancy and a healthy baby. It is best that pregnancy is planned and the ulcerative colitis is stable and in remission at the time of conception. Also, for most women, having a baby does not make their condition worse. But if you do become pregnant during a flare-up, you may be more likely to give birth early, or have a baby with a low birth weight. Your doctor should be able to help you to control your symptoms as much as possible, and it may be helpful to discuss your options with them if you are thinking of having a baby. Most of the medications used in ulcerative colitis are continued during pregnancy with a couple of exceptions. So please discuss the medication that you are taking with our specialist, should you be considering starting a family.
Contact Details:
If you have any questions or queries about your treatment please contact us at the:
Ruth Astles Centre. (Surgical or stoma queries) Colorectal CNS
Heartlands Hospital- Telephone 0121 424 2730 or 0121 424 3730
Good Hope Hospital- 0121 424 7429
Monday to Friday 9.00am – 4.00 pm an answer phone is available to take your calls out of hours. Please leave a message and we will contact you as soon as possible
IBD HELPLINE (General queries about colitis or medication advice)
Heartlands/Solihull
Telephone 0121 424 0434 (24 hour answer machine)
Good hope
Telephone 0121 424 9687 (24 hour answer machine)
Please note all calls will go to the answer machine and calls will normally be returned within 2 working days (Mon-Fri). For urgent calls that cannot wait please seek advice from your GP surgery. This is not an emergency service.
Additional Sources of Information:
Colorectal nurses Web site, lots of links and information
Colostomy UK
Tel: (0)118 939 153
24-hour free helpline
0800 328 4257
Ileostomy Association
Freephone: 0800 018 4724
Telephone: 01702 549859
Purple Wings
Crohns and Colitis UK organisation
0300 222 5700
Mon, Tue, Wed & Fri: 09:00 – 17:00
Thu: 09:00 - 13:00
0121 737 9931 (13:00 -15:30 Tuesday to Thursday, and 18:30 - 21:00 Monday to Friday)
This leaflet is based on one designed by the Association of Coloproctology of Great Britain and Ireland, but has been modified (with permission) by us to reflect local policies. The Association of Coloproctology web site (.uk) has further information on all aspects of colon and rectal disease. The leaflet has also been updated and the information is in line with the information available from the Crohns and colitis UK organisation. (See contact details above)
Our commitment to confidentiality
We keep personal and clinical information about you to ensure you receive appropriate care and treatment. Everyone working in the NHS has a legal duty to keep information about you confidential.
We will share information with other parts of the NHS to support your healthcare needs, and we will inform your GP of your progress unless you ask us not to. If we need to share information that identifies you with other organisations we will ask for your consent. You can help us by pointing out any information in your records which is wrong or needs updating.
Additional Sources of Information:
Go online and view NHS Choices website for more information about a wide range of health topics
You may want to visit one of our Health Information Centres located in:
• Main Entrance at Birmingham Heartlands Hospital Tel: 0121 424 2280
• Treatment Centre at Good Hope Hospital Tel: 0121 424 9946
• Clinic Entrance Solihull Hospital Tel: 0121 424 5616
Dear Patient
We welcome your views on what you thought of this patient information leaflet, also any suggestions on how you feel we can improve through our feedback link below:
• Patient Information Feedback email: patientinformationleafletfeedback@heartofengland.nhs.uk
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