Living with ulcerative colitis

Ulcerative colitis will inevitably have an impact on your physical and mental wellbeing, but keeping a positive outlook can really make a difference.

The healthcare professionals are there to help you to learn how to live with ulcerative colitis. Specialist nurses assist with all kinds of issues, such as stoma and post-operative care, while your doctor will prescribe medication and help you to get the most from your regime. Finding ways to maintain your independence will go a long way in helping you stay positive.

Many people who have ulcerative colitis lead normal, active lives. They are able to attend school and university, have careers, raise families and function successfully at home and work.

Many sufferers find that times of high stressRelating to injury or concern. are linked to a worsening of their symptoms, so it helps to learn to recognise when you are getting anxious and find ways to keep calm.

There are many support groups for people with ulcerative colitis, often set up by people whose lives are directly affected by the condition. They can be a great source of first-hand practical information. 

In this section we talk in more depth about living with ulcerative colitis:

Personal relationships

The problems that come with ulcerative colitis often mean you cannot always be as flexible or spontaneous as you may like. Having the support of family, friends and colleagues will go a long way in helping you to cope.

Family issues

Family members may be just as worried as the person with ulcerative colitis, especially soon after the diagnosisThe process of determining which condition a patient may have. is made in a young person.

Parents of children with the disease are often acutely anxious and may even feel guilty that their child is suffering. Sometimes this makes it harder for young people to discuss their own anxieties.

Older children and teenagers may also feel that their parents' concern over activities and medication schedules is restrictive, while parents may be worried that their child is running risks that could exacerbate the problems.

It is important to be aware that illness in one family member is stressful for all of you.

It may help to realise that you all need to be able to express your concerns and emotions if you want, and that talking through issues as they arise is better than allowing anxiety or even resentment to build up.

Living with a stoma and an ostomy bag may sound daunting and restricting. The good news is that, properly managed, it will bring great relief to your condition and should not restrict your life significantly.

Sexual relationships

Ulcerative colitis can affect your sex life and your relationship with partners. Although the condition does not usually interfere with the physical capacity for sexual intercourse, at times the 'mood' can be dampened by fear of incontinenceThe involuntary passage of urine or faeces. or abdominal pain, or simply by fatigue.

Talking to your partner and airing your concerns will help to reduce the negative feelings.

People with stomas and ostomy bags might like to empty the pouch before sex or cover it with specially designed underwear.

Going out in public places

For your comfort and peace of mind, it helps to plan your itinerary before you leave home. Thinking ahead, such as finding out where the bathrooms are in restaurants, shopping areas or on a trip, becomes second nature for many people with ulcerative colitis.

Try to be matter-of-fact about your needs. Most people will want to help if they can. Many organisations worldwide issue 'Can't Wait' cards for people who need to use the bathroom frequently due to their illness. You can show this to make it easier for people to understand your needs rapidly.

Attending special events

Special occasions such as weddings, graduations and holidays are something to look forward to, but they can also raise stressRelating to injury or concern. levels. This in turn can lead to flare-upsTerm to describe episodes when the symptoms of a condition worsen.. It helps to plan ahead:

  • Carry all your medicines and other supplies you might need
  • Locate the bathrooms as soon as you arrive
  • Eat slowly and in small amounts
  • Avoid too much alcohol
  • Make sure you can get home if you need to leave earlier than planned.

These social occasions may bring together friends and relatives who do not understand the problems you face. It may be helpful for you to talk to them in advance about your condition and how you feel.

Travelling

Many people with ulcerative colitis travel widely and enjoy long-haul holidays. Flare-ups may be unpredictable, but if you take a few precautions, you can enjoy the experience of travelling.

  • Inform your doctor about your travel plans. If you are travelling within the same country, you may want to ask about contacts with other doctors in the places you plan to visit, in case you need their help
  • If you are going to less developed countries, consult a health professional specialising in travel medicine if possible
  • Be sure to carry enough medication to cover the time you are likely to be away and a few days' extra supply in case your return is delayed. If flying, always carry all your medication in your hand luggage to prevent it going astray.

Diet and nutrition

Maintaining a healthy and balanced diet may help you to reduce the symptoms of ulcerative colitis, replace lost nutrients and promote the healing process. However, you should always check with your doctor before making any dramatic changes to your diet.

  • A healthy diet should include a variety of foods from all food groups. Meat, fish, poultry and dairy products provide protein. Fruit and vegetables provide valuable vitamins, minerals and fibre, as well as carbohydratesA group of compounds that are an important energy source, including sugars and starch. that are also found in bread, cereals and starches. Foods that are high in fatOne of the three main food constituents (with carbohydrate and protein), and the main form in which energy is stored in the body. may cause digestive problems such as gas and diarrhoeaWhen bowel evacuation happens more often than usual, or where the faeces are abnormally liquid..
  • You may need to use dietary supplements of vitamins and minerals.
  • If you are lactose-intolerant, you should restrict your intake of milk and other lactose-containing foods or use products that have been specially formulated for people who are lactose-intolerant.
  • When you have a flare-upTerm to describe an episode when the symptoms of a condition worsen., bland, soft foods cause less discomfort than spicy or high-fibre foods.
  • Smaller, frequent meals are recommended.
  • In children or teenagers with ulcerative colitis, frequent contact with a dietitianA specialist in food and nutrition. can be especially useful. This is often recommended by doctors as a way of allowing younger patients to have some say in the day-to-day management of their disease and problems.
  • Read about the Nutrition in IBD.

Minimising the risk of flare-ups

It may be possible to reduce your risk of suffering from ulcerative colitis flare-upsTerm to describe episodes when the symptoms of a condition worsen. by making a few changes to your lifestyle.

Exercise may be helpful as it will increase your level of fitness and could also improve your mood. It may also help to protect against the effects of the bone mineral loss that may occur in ulcerative colitis.

Stress has been linked with flare-upsTerm to describe episodes when the symptoms of a condition worsen., although there is some debate about this among doctors. Reducing stressRelating to injury or concern. may be helpful to improving general health.

A healthy diet is important. There are also problems with absorbing sufficient fluids and nutrients such as vitamins and minerals through a diseased gastrointestinal tractThe gut, which begins at the mouth and ends at the anus. wall.

The aim is to enjoy a well-balanced high-complex carbohydrate and high-protein diet. It is worth investigating if lactose and gluten cause you irritation, as a milk- and wheat-free diet may help. Read about the Nutrition in IBD.

Stress

Coping with an illness like ulcerative colitis is stressful. It can be a juggling act to manage your diet closely, visit the doctor regularly and keep to your daily treatment schedule. If the symptoms of IBDAn abbreviation for inflammatory bowel disease, a group of inflammatory conditions of the intestine. The two major forms are Crohn’s disease and ulcerative colitis. are painful or embarrassing, this may add to the stressRelating to injury or concern. levels.

Many sufferers find that times of high stressRelating to injury or concern. are linked to a worsening of their symptoms, so it helps to learn to recognise when you are getting anxious and find ways to keep calm. As it is not always possible to avoid stressRelating to injury or concern., regular relaxation and breathing exercises may help.

Exercise

Keeping in shape is important for everyone's health, but regular exercise is particularly important if you have ulcerative colitis. Exercise will help you to:

  • Reverse muscleTissue made up of cells that can contract to bring about movement. wastage and rebuild muscleTissue made up of cells that can contract to bring about movement.
  • Recover more quickly after surgery
  • Prevent loss of calciumAn element that forms the structure of bones and teeth and is essential to many of the body's functions. and protein from bones.

Before you start any programme of exercise, especially if you are taking medication or have had surgery, check with your doctor or specialist.

Integrative therapies

A large proportion of people who have inflammatory bowel diseaseA group of inflammatory conditions of the intestine. The two major forms are Crohn’s disease and ulcerative colitis. turn to integrated therapies, although many feel that comprehensive information about these remedies is lacking.

Like the conventional medical therapies aminosalicylatesA family of drugs that reduce inflammation., several herbal remedies used in inflammatory bowel diseaseA group of inflammatory conditions of the intestine. The two major forms are Crohn’s disease and ulcerative colitis. have been shown to have antioxidantA chemical that can neutralise damaging substances called oxygen free radicals. properties - in other words, they prevent damage to cells caused by a chemical reaction called oxidation.

Research into the effect of some of these herbal extracts in biopsies of people with active ulcerative colitis has shown that slippery elm bark, devil's claw, tormentil and wei tong ning all have antioxidantA chemical that can neutralise damaging substances called oxygen free radicals. properties.

One small study looked at the use of aloe vera gel over four weeks in people with active ulcerative colitis. Aloe vera gel is thought to have anti-inflammatoryAny drug that suppresses inflammation and anti-oxidant properties. An improvement in symptoms was seen more often in people taking aloe vera gel compared with those who took a placebo, and no significant adverse events were reported. The herb Psyllium, also called Plantago ovata, also seems to improve symptoms and prolong the period of remission.

Probiotics are dietary supplements that contain live bacteriaA group of organisms too small to be seen with the naked eye, which are usually made up of just a single cell. or yeast that are believed to be potentially beneficial for the body. See the practical help page, Probiotics.

A germinated barley foodstuff (GBF), which consists mainly of fibre and protein, may lower the relapse rate in ulcerative colitis and appears to be tolerated well by patients. GBF is thought to act as a prebiotic. Unlike probiotics, which contain live bacteriaA group of organisms too small to be seen with the naked eye, which are usually made up of just a single cell., prebiotics are thought to encourage the growth of these "friendly bacteriaA group of organisms too small to be seen with the naked eye, which are usually made up of just a single cell.".

Omega-3 fatty acids are present in fish oil and are believed to have an anti-inflammatoryAny drug that suppresses inflammation action. Some studies have suggested that these compounds may reduce disease activity in inflammatory bowel diseaseA group of inflammatory conditions of the intestine. The two major forms are Crohn’s disease and ulcerative colitis., when used in addition to standard medical treatment. One review of omega-3 fatty acids in IBDAn abbreviation for inflammatory bowel disease, a group of inflammatory conditions of the intestine. The two major forms are Crohn’s disease and ulcerative colitis. found that there was insufficient evidence to show whether or not they improved symptoms. However, it did report that fewer patients who were taking omega-3 fatty acids needed to have corticosteroidsA group of hormones that are produced by the adrenal glands, which sit on top of the kidneys. therapy and of those who did need corticosteroidsA group of hormones that are produced by the adrenal glands, which sit on top of the kidneys., the doses were lower.

Some studies have suggested that acupunctureA complementary therapy in which fine sterile needles are inserted into the skin at specific points. may have some value in ulcerative colitis. However, insufficient evidence is available at the moment to draw conclusions as to how effective it is for this condition.

Fertility

Most women with ulcerative colitis are able to become pregnant as easily as other women. For men, the medication sulfasalazine can decrease sperm count and may cause temporary infertility, so if you are trying to become a father, ask your doctor about stopping this drug and switching to another 5-aminosalicylate (5-ASA) compound. In addition, both partners should stop taking methotrexate for three months before trying to conceive, and women should not take this drug during pregnancy or while breastfeeding as it may have harmful effects for the fetusAn unborn child from eight weeks of development onwards. or baby.

Women who want to have children in future and are due to have surgery for ulcerative colitis need to discuss pregnancy with their doctor or specialist before having an operation. Surgery may reduce fertility among both men and women with ulcerative colitis.

It is sensible to be as fit as possible before becoming pregnant. If you are taking medication, talk to your doctor about whether the drugs you are using are safe in pregnancy and, if not, what alternative medications are available. This may be especially important if you are taking steroids.

A well-balanced diet is also important. Once a woman is pregnant, it is important for her to follow doctor's advice regarding regular and as-needed medication. Vitamins can be taken as usual. It is especially important to continue taking folic acid if you are on sulfasalazine since the drug inhibits folic acid absorption.

There is no increased risk of miscarriageThe spontaneous loss of pregnancy., stillbirth or congenitalAny condition present since birth. abnormality among women with ulcerative colitis.

As there is strong geneticRelating to the genes, the basic units of genetic material. component to IBDAn abbreviation for inflammatory bowel disease, a group of inflammatory conditions of the intestine. The two major forms are Crohn’s disease and ulcerative colitis., it is possible that your children may also be affected, though this is by no means certain. If one parent has IBDAn abbreviation for inflammatory bowel disease, a group of inflammatory conditions of the intestine. The two major forms are Crohn’s disease and ulcerative colitis. there is about a nine per cent chance that a child will develop the condition. The risk rises to 36 per cent if both parents are affected.

Coping with a stoma and an ostomy bag

Living with a stoma and an ostomy bag may sound daunting and restricting. The good news is that, properly managed, it will bring great relief to your condition and should not restrict your life significantly. It takes a bit of getting used to, but will be well worth the effort, and there are numerous products on the market to make this lifestyle change much easier.

Scarring following surgery

Although scars cannot be avoided, good surgeons should be able to minimise their size and shape. The size and shape of your scar will vary according to the area that is operated on, and the exact type of surgery that is done. Keyhole or laparoscopic surgery may be possible. If so, your scar will be significantly smaller than with open surgery.

If you are concerned or embarrassed about surgical scars, it can sometimes help to see pictures taken by other people who have them.