Product Info

Coping Successfully With Ulcerative Colitis
By Peter Cartwright - a Sheldon Press book

People with ulcerative colitis know that it can be painful and embarrassing, and can sometimes severely disrupt their lives. Peter Cartwright offers hope and practical advice for coping successfully with this common but little-talked-about condition. As well as providing clear and accessible information about the disorder. he explains how to reduce its effects on daily life and describes the latest developments in its treatment.

'An invaluable resource for people with ulcerative colitis . . . It is packed with useful facts, tips, information and explanations.' From the Foreword by Virginia Ironside

'A highly readable and up-to-date account. I strongly recommend it to all [people] with ulcerative colitis and their relatives and friends.' Dr Jeremy Nightingale, Consultant Gastroenterologist, Leicester Royal Infirmary

'A superb . . . book, full of useful information presented in a clear and attractive style.' Mr Roy Maxwell, Consultant Colorectal Surgeon, Royal Victoria Hospital, Belfast

'[People with ulcerative colitis] will benefit enormously from reading this book. I recommend it unreservedly.' Professor Subrata Ghosh. Hammersmith Hospital

Contents

Contents 

• Foreword by Virginia Ironside
• Introduction: basics of ulcerative colitis
• What causes ulcerative colitis?
• Diagnosis and tests
• Treatments
• Diet
• Living with ulcerative colitis
• Non-intestinal complications
• Surgery
• Living with an ileostomy or a pouch
• Special circumstances
• Probiotics and prebiotics
• Future developments
• Glossary
• Sources of help
• Further reading
• Index

Extra Info This book is written for people with ulcerative colitis (UC), their family members and close friends. It aims to give clear and readable information about UC, to explain how to reduce the effects of UC on daily life, and to describe the potential of new treatments. Together with Crohn's disease, a similar ailment, UC is referred to as an inflammatory bowel disease, but this book focuses on UC alone.

What is ulcerative colitis?

Ulcerative colitis is an illness in which part of the intestine becomes inflamed and develops ulcers (open sores). The part of the intestine affected by UC is the colon (also known as the large intestine), which forms the lower end of the digestive tube. It is the inner lining of the colon that is inflamed in UC.

The colon removes water from undigested food so that the waste matter becomes more solid. In people with UC the inflamed lining of the colon is less efficient at absorbing water so that the contents of the lower intestine remain liquid. Diarrhoea develops from the liquid waste and this may be very difficult to control.

In addition to severe and persistent diarrhoea, people with UC may also find blood, mucus and pus in their stools (faeces).

• The blood is present because the ulcers on the intestine damage the lining, which leads to bleeding.
• Mucus is a slimy substance that lines the intestine. It protects the intestine from hard food and harmful germs and helps to lubricate the movement of the contents of the intestine. When the intestine is inflamed, as in UC, mucus is shed and the tissues of the intestine produce a lot more as a replacement. As the inflammation in UC tends to be continual, newly produced mucus often comes out with the diarrhoea and blood.
• Pus, which is a thick yellow or green liquid, may also be produced in UC. The pus consists of white blood cells that are part of the inflammatory process, plus dead bacteria if there is any infection in the ulcers.

Other symptoms of UC may include crampy abdominal pain, tiredness and fever. Less commonly there may be skin complaints or inflammation of the eyes, the mouth or the joints.

About half of all people with UC have only the lowest end of the colon affected. The symptoms are usually mild diarrhoea with blood and mucus in the stool and frequent false urges (tenesmus) to have a bowel motion. Occasionally, bleeding with constipation occurs instead of diarrhoea. In other people, the inflammation extends up the colon from the rectum, sometimes affecting the whole colon. Usually, the more extensive the disease, the more severe and diverse the symptoms.

One of the main practical concerns for people with UC is having an episode of bowel incontinence. The urge to empty the bowels may be sudden and very strong. There may be difficulty in quickly finding a toilet, and at night, sleep may be disturbed by strong diarrhoea urges. Personal and social confidence may be affected by the fear of having an 'accident'.

Liz
I was losing weight, and the bleeding and diarrhoea were getting worse, up to 10 times a day and uncontrollable. There were many times when I had 'accidents' while I was out in shops or driving and also while I was at home. Although I live on my own and no one else knew about these 'accidents', I found them very traumatic.

In the UK, there are about 90,000 people with UC. It most commonly starts during young adulthood, although it may start at any age.

UC is not infectious. You cannot catch it from someone else or give it to someone else.

Use of the word 'colitis'
Colitis is a general term that means inflammation of the colon. It is also used in common parlance to cover such conditions as irritable bowel syndrome (IBS) or gastroenteritis (infectious diarrhoea). Ulcerative colitis is a completely separate disease that is usually more serious and troublesome than these other forms of 'colitis'

What causes ulcerative colitis?
The cause of UC is currently not known, but the prevalence of the disease in different populations indicates that it is caused by a combination of environmental and genetic factors. The main theories about the disease are described in Chapter 1. There are also descriptions of the digestive system, the colon and the role of the gut microflora (resident bacteria in the intestine).

How is UC diagnosed and monitored?
It can be difficult, initially, to diagnose UC. There is a wide range of explanations for persistent diarrhoea and most of these illnesses are more common than UC.

A number of different tests may be undertaken to help reach a diagnosis. The most useful is an endoscopy, whereby a tube is placed into the back passage to enable the doctor to examine the rectum and colon. Other tests include X-ray pictures and various blood tests.

After diagnosis, some of these tests will be repeated periodically to check how the disease is progressing. The tests and examinations will enable your doctor to inform you how much of the colon is affected by inflammation. Chapter 2 explains more fully the process of diagnosis and the tests involved.

What are the treatments available?
Currently there is no cure for UC. Instead, it is treated with a range of drugs, and these may be effective in bringing the disease under control. The effectiveness of drugs varies from person to person, depending mainly on the severity of the condition. UC is a fluctuating illness, in that there are periods when it is active (flare ups), and other times when it is quiescent (in remission). It is not possible to predict how fluctuations will proceed. Information on different drug treatments is given in Chapter 3.

Is there a recommended diet?
People who are recently diagnosed usually ask their doctor or nurse whether there is a particular diet that should be followed. Unfortunately, there is no recommended diet, because medical research has not shown that a particular diet works to reduce disease.

The food you eat is not irrelevant, however. Good nutrition is important to help the body cope with the effect of continuing inflammation. The amount of fibre in the diet is also important. A small proportion of people with UC are intolerant of certain foods and feel better if they avoid them. These matters are covered in Chapter 4.

What are the day-to-day problems with UC?
The difficulties associated with daily living are connected to:

• adjustments to the continuing nature of the condition;
• worries about the long-term effects of UC, including side effects of the medications, complications such as colon cancer, a continuing lack of energy and fears about possible surgery;
• effects on personal relationships as the result of an embarrassing condition, which may be hard to discuss; and
• coping with practical issues relating to persistent diarrhoea.

All these concerns are discussed in detail in Chapter 5

Non-intestinal complications
A small proportion of people with UC also have health problems that are associated with it. These may include inflammation of the joints and skin conditions. The full range of possible complications is described in Chapter 6.

Is surgery sometimes needed?
If the UC is severe and has intolerable effects on a person's life, the doctor may propose that the whole of the colon be surgically removed. This is known as a colostomy. UC only affects the colon, including the rectum, so it cannot return if the colon is removed. Another reason for a colostomy is the discovery of signs of cancer in the colon or rectum (or pre-cancerous signs). Also, if the UC causes very rapid deterioration of the gut, a rare occurrence, an emergency colostomy will be needed. Chapter 7 discusses these matters, the types of surgery available, and the practical details of being hospitalized both before and after the operation.

If your colon has to be removed, there is usually a choice between having an ileostomy or an internal pouch to deal with bodily waste. Chapter 8 describes these alterative.

Only a minority of people with UC require surgery, but those that do usually report that they feel much better afterwards.

Special circumstances
The treatment of children with UC is somewhat different to that of adults. A major concern is for the child's growth. The inflammation itself, plus the effect of some medications, together with a reluctance on the part of the child to eat may lead to a delay in physical development. The medical team may recommend a special dietary approach.

Another area of special consideration is fertility and pregnancy. For women with UC, it is perfectly possible to have a successful pregnancy. There are usually worries about the effect of medications on the baby, but it is generally considered safer to keep the UC under control with the continued use of medication than to stop taking the drugs.

These two matters are discussed in Chapter 9, along with issues that specifically concern the over-60s.

Probiotics and prebiotics
One of the most promising areas of future treatment lies with probiotics and prebiotics. The former are products containing beneficial bacteria, and the latter are types of soluble dietary fibre that stimulate an increase in numbers of beneficial bacteria in the intestine.

It is known that the gut microflora play an important role in the continued inflammation of UC, and that people with UC have a smaller proportion of beneficial bacteria on the lining of the colon than the general population. There is growing evidence that by taking probiotics a better balance of bacteria in the microflora may be achieved, together with a reduction in the severity of UC. Prebiotics may be able to increase the numbers of beneficial bacteria already living in the intestine. Chapter 10 gives up-to-date information on this new area of research.

What does the future offer?

Molecular biology is an important scientific advance that uses special techniques to analyse the molecules and chemical processes in cells. The increased knowledge gained from the use of these techniques is likely to lead to identification of the genes involved in UC, as well as an acceleration in the development of a new wave of drugs.

Another area that may lead to greater knowledge is examination of the effect of nicotine on UC. People with UC who smoke tend to have a less severe version of the disease. It is believed that the active ingredient in tobacco in this regard is probably nicotine, and investigations into this field may explain why this is happening. There may also be more research into the benefits of nicotine patches.

There is some evidence that certain ingredients of fish oil have anti-inflammatory effects on active UC if the oil is consumed in large quantities. Further research may show whether fish oil has the potential for being a new treatment for UC inflammation.

About one-third of people with UC believe that stress can cause a flare-up of their disease. There is potential for examining what is happening to such people. Also, guidance on coping with excessive stress may be helpful.

All these matters are covered in Chapter 11, together with two unusual experimental developments, parasitic worms and faecal enemas, which indicate how solutions to the problem of UC are being approached from many directions.

Throughout this book, I have inserted anecdotes from people who have UC. These quotes provide details of their personal experiences with diagnosis, treatment and daily life. They are meant to give you some indication of the variety of experiences of people who live with UC. Perhaps you will relate to some of them more than others. Remember what works for one person may not work for you. Each person's story, including your own, is unique.

About the authors
Peter Cartwright is the former Assistant Director of the National Association for Colitis and Crohn' s Disease (NACC). For four years he was responsible for NACC's publications, including the highly regarded member booklet series. He is the author of Probiotics for Crohn's and Colitis, and his talk on the subject to local NACC groups regularly achieves record attendances. Peter has worked for patient and self-help associations for 18 years, including as National Development Officer with the Self-Help Alliance and Director of the British Stammering Association. He has an MA in Sociology from Nottingham University and is married with two grown up children.