Bowel problems

• It’s common for people with CGD to have some loose bowel motions. So how do you know if it’s serious enough to go to your nurse or doctor?

  Make an appointment if you:

  • Have had diarrhoea for more than a few days
  • have noticed changes in your bowel habits – e.g. if you’re opening your bowels much more or less often, or if the stools have changed (they might be more watery or a different colour)
  • Have to run to the toilet
  • Think your bowel motions smell very offensive
  • Have slime (mucus) in your bowel motions
  • Have blood in your motions
  • Are having a lot of stomach ache
  • Have a sore bottom
  • Have lost weight (or if a child has failed to gain weight)
  • Feel generally unwell and run down

  Most people find talking about their bowels embarrassing. But it’s important to tell someone about your symptoms and get help early.

• Constipation is when you have difficulty passing bowel motions, and they take a long time to pass through your system. It’s common for people with and without CGD.

  When you’re constipated, motions can be firmer or harder than usual, so are difficult and painful to pass. This can lead to people, especially children, avoiding going to the toilet. So stools continue to build up, causing stomach pain, bloating and discomfort.

  It’s also possible to pass very loose stools – like diarrhoea – when you have constipation. As stools build up and harden in the bowel, it becomes more difficult to pass a motion. Liquid stool can seep around the hardened stool, giving the impression that you have diarrhoea. This is often called ‘constipation with overflow’.

  Many laxative medications are available to help with constipation. They can:

  • Make motions softer and easier to pass
  • Encourage fluid into the bowel to make passing a stool easier
  • Stimulate the bowel to expel motions

  Get advice from your doctor before using any medicines. Laxatives generally work best when you use a combination of different ones and take them over a period of time.

  You should take medicine to soften stools first so passing a stool is less likely to hurt. When the constipation is under control, it’s sensible to carry on using stool softeners for a while so the problem doesn’t build up again.

• There are several things you can do at home to help with constipation, including:

  • Eating more fibre
  Increasing the fibre in your diet can help with constipation. Foods with lots of fibre include fruit and vegetables, wholemeal bread, pasta and rice, and breakfast cereal. If you’re not used to a lot of fibre, increase it gradually by adding one food at a time. You may want to get advice from your GP, nurse or a dietician.

  • Drinking more fluid
  Lots of people don’t drink much during the day, especially if they’re busy. This can contribute to constipation. Drinking more is an easy way to help keep it at bay.

  Ideally, an adult should drink about two litres of fluid a day (including water, fruit juices, smoothies, the occasional tea or coffee, milk and soups). Children need less – anything from 1.3 to around two litres a day.

  Try to avoid sugary soft and fizzy drinks. These can be high in sugar and calories and bad for your teeth.

  • Doing exercise
  If you don’t do much exercise, you’re likely to feel slow and sluggish. That can make your bowels slow and sluggish too. A little gentle exercise – even a short daily walk – can help to keep things moving.

  Aim to try doing one of these things at a time, so you don’t get overwhelmed and stay motivated.

• Constipation in children can become worse if they’re embarrassed, scared of going to the toilet in an unknown place or in school, or if there’s no parent around to help them.

  If your child is suffering from constipation, it is worth investigating the toilet facilities at school to see whether they may be contributing to the problem.

People with CGD have problems with inflammation in various parts of the body. When the bowels become inflamed it can cause constipation, diarrhoea, abdominal pain and weight loss, as well as problems with putting on weight and growth in children.

Symptoms are often similar to inflammatory bowel diseases like ulcerative colitis and Crohn’s disease. People with CGD are sometimes misdiagnosed with these disorders.

Inflammation can happen in any part of the gastrointestinal tract. However, it most commonly affects the large bowel. Inflammation there is called colitis (‘colon’ is another name for the large bowel). Colitis causes a breakout of ulcers similar to mouth ulcers. This can happen in a small area (often the last part of the bowel before the anus), or throughout the bowel.

Occasionally, bowel inflammation is associated with strictures. A stricture is an area of narrowing in the bowel, caused by the bowel wall getting thicker or scarred because of bowel inflammation.

• Diarrhoea
  • Needing to get to the toilet quickly
  • Stomach pain
  • Slimy bowel movements – colitis can cause slimy (mucus) bowel motions or cause blood in bowel motions
  • Low energy, poor appetite or weight loss – it can be more difficult to absorb nutrients when your bowel is inflamed, particularly when inflammation is in the stomach and upper bowel. Inflammation itself also uses up a lot of calories
  • Skin tags – these are harmless bits of extra skin often found around the anus
  • Fissures – these are small cracks which can appear around the anus. They can be very painful, particularly when passing a bowel motion. They tend to heal on their own, but using barrier cream can help
  • Anal abscesses – sometimes you can get abscesses around the bottom area. They usually start as small, hard, sore lumps which can later fill with pus. They often clear up with antibiotics, but occasionally a small operation is needed to drain them
  • Fistula – occasionally, as a result of the inflammation from an abscess, a small hole can appear around the edge of the anus. This is a fistula. It can leak fluid and pus and sometimes small amounts of stool. Fistulas can be quite difficult to treat, requiring long courses of antibiotics and occasionally a minor operation.

• A major symptom of bowel inflammation in children and young people is a delay in growth, because they can’t absorb nutrients. Children and young people with CGD may be anything from a little smaller than their peers, to the shortest person in their class or year.

  We don’t yet know exactly why and how CGD affects growth. Bowel problems do contribute to delayed growth, as does taking steroids, but they are probably not the only causes.

  Sexual development may be a bit delayed too. Girls may start their periods later than average and boys’ testicular development may be slower.

  With treatment and time, most people catch up with their friends later on and reach normal height.

• Your GP or CGD doctor will probably diagnose any bowel problems. They may refer you to a medical professional colleague who specialises in gastrointestinal illnesses (disorders of the stomach and bowels).

  They will examine you thoroughly, including feeling your stomach and maybe examining your bottom. They’ll ask a lot of questions. You may find some of them embarrassing, but it’s important to answer frankly so the doctor can make an accurate diagnosis and get you going with the right treatment.

  You may need to have several tests, including:

  • Blood tests
  You will need to have a few blood tests to help the doctor diagnose you. You may need regular blood tests to monitor your treatment and progress too. These tests will look for changes in the blood called ‘inflammatory markers’, which indicate whether inflammation is present or not.

  • A barium meal and follow-through
  This involves drinking a special liquid called barium which shows up on an X-ray as it passes through your system (it’s thick and chalky, so can be difficult to drink). As the barium goes down through your body, a radiologist will take several X-rays, so your doctor can see what your bowel looks like and what’s happening inside.

  This test can take two to three hours. You may have to wait for some time between each X-ray while the barium moves through your gut. Take a book, magazine or iPod with you.

  • A colonoscopy or endoscopy
  A colonoscopy is when a small camera on a flexible tube is inserted into your bowel through your anus so doctors can see inside and take a biopsy (a tiny snippet from your bowel they can analyse). An endoscopy is when the camera is inserted through your mouth.

  That may sound rather nasty. But you’ll be sedated so you won’t be too uncomfortable.

  You can take someone along with you for all these tests if you want. Talk to your doctors and nurses about this.

  Every hospital should have information leaflets for you to read about the tests. If you have any questions, ask the doctor or nurse, or contact your CGD nurse.

  The doctor may not be able to tell you what the problem is immediately after a test. But they could give you an idea. A more definite diagnosis should come after a week or so.

• Bowel inflammation in people with CGD is generally treated with medication. Occasionally surgery is required. Bowel inflammation affects everyone differently. Doctors will probably come up with an individual treatment plan just for you.

• There are no particular dietary recommendations for people with bowel inflammation.  However, some changes to diet may help. Always see a doctor, nurse or dietician before starting a new diet.

  You may lose your appetite or find that food doesn’t taste like it should when your bowel is inflamed. Eat what you can to stay strong. Indulge in all of your favourite meals. Aim to eat little and often.

  Different people find that different foods affect their bowel habits. If a particular food affects you badly, it’s sensible to avoid it.

  Doctors and dieticians may advise some people with colitis to go on a ‘low residue’ diet. This means eating food that’s low in fibre and fat, which the gut can tolerate.

  You can have special milkshake-type drinks (or fruit-flavoured drinks) to add extra calories to your diet if you find it difficult to keep your weight up or have lost your appetite. Doctors sometimes recommend these drinks for children and young people who are struggling to grow.

  These drinks can actually replace food, providing all the nutrients you need, when your bowel is very inflamed and can’t digest a normal diet. This should only be necessary very occasionally and for short periods.

  Sometimes it’s difficult for children (and occasionally adults) to drink enough of these supplements to provide the calories they need. Doctors may advise that they’re given through a tube passed through the nose into the stomach. This tube comes out easily when it’s no longer needed.

• • Anti-inflammatory medication
  Special anti-inflammatory medicines, often sulphasalazine or mesalazine, treat bowel inflammation.

  These may be the only bowel medicines people with milder inflammation need. They have very few side-effects and can be taken safely for long periods of time.

  You usually take them by mouth, and sometimes through the rectum.

  • Steroids
  Steroids are powerful anti-inflammatory medicines. They treat the inflammation associated with CGD very effectively. However, they have a big downside: they stop your body dealing with infection so well.

  That means doctors only prescribe steroids when they really are necessary, and monitor patients closely for infection.

  Steroids act quite quickly, making you feel better. But they do have some side-effects, and people can react to them in different ways.

  Some people feel hungrier when they take steroids (which can be a good thing for some people with CGD). It’s quite common to put on weight, but not all of it is from eating more. Some of it comes from retaining water. This will soon disappear once you stop the steroids.

  You may also get a round face or become a bit pimply.  Girls sometimes get a few coarser hairs on their face. Steroids can make you moody and restless too.

  Some people who have had long or frequent courses of steroids may develop thinning of the bones, or osteoporosis. These are usually older people, but it can happen in younger people too.

  It can be tough dealing with the side-effects of steroids. But you have to weigh the disadvantages against the advantages of feeling much better and being able to lead a more normal life.

  If you’re really struggling with side-effects, talk to your doctor or nurse about how you feel. Never just stop taking steroids – it could make you quite unwell. Steroids usually need to be reduced gradually.

  Your doctor will prescribe the lowest possible dose for the shortest possible time. When you come off the steroids, most of the side-effects will disappear.

  • Other medicines
  Other medicines are sometimes used to treat more severe bowel inflammation. One of these is azathioprine, which works in a similar way to steroids. It is often used to ‘take over’ from steroids if someone has been on them for a long time.

  It can slow down the body’s response to infection so doctors will monitor patients closely and do regular blood tests.

  • Taking the medicines
  Some medicines are taken through the anus up into the rectum. This sounds unpleasant, but it isn’t difficult. Some people even prefer it to taking lots of tablets. Your nurse will show you how.

  Because some of the medicines for bowel inflammation are quite powerful, it is very important that you take them exactly as the doctor prescribes. Your pharmacist will write instructions on the package and there will be a leaflet to read inside too. Ask them to explain anything you don’t understand. Tell your doctor right away if you get any unusual symptoms

  If you’re on steroids or azathioprine you’re more likely to pick up infections. If you have a temperature or a sore throat, tell your CGD nurse or your doctor.

Not many people need surgery to treat problems with bowel inflammation caused by CGD. If your doctor thinks it might be necessary, they will talk to you about it.

Having bowel problems can be pretty miserable.

Symptoms tend to come and go. This means you may have a patch where your bowel is very inflamed and you have diarrhoea and stomach ache. But it’s also likely that after a while your symptoms will disappear for months or even years at a time.

Remember, and remind everyone else, that even when you’re having trouble, you’re not an invalid. You can still enjoy things with your friends and family.

Having bowel problems can be pretty miserable.

You may well have to work or go to school, and deal with your bowel problems at the same time.

Here are a few tips on how to cope:

• Check out toilet routes – make sure you know the fastest way to the toilet when you’re somewhere new
• Always carry toilet roll – some people carry sheets of toilet paper and spare underwear when they go out. They say this gives them confidence, even when they don’t use them
• Wear pads for extra confidence –  if you’re worried about having an accident, you may want to carry some pads for your underwear. It can help you feel more confident. Pads keep you clean and dry and you can change them more easily and discreetly than underwear. You can buy them at chemists. Your doctor and nurse will be able to advise you
• Block out toilet noises to reduce embarrassment – flush the toilet just before you use it
• Carry air freshener – you can buy small canisters of air freshener to use
• Take medication for extra help – there are medicines you can take to slow down your bowel movements, making diarrhoea less of a problem. Antispasmodic medications (which help ‘relax’ the bowel) may also help some people. Only take these medicines after speaking to your doctor.

There’s nothing to stop you going on holiday. However, it’s best to avoid places renowned for stomach upsets – catching something could really upset your bowel. Your doctor may recommend taking antibiotics with you in case you become unwell. Make sure you discuss this with your doctor in plenty of time before you go away.

Almost everyone finds bowel problems embarrassing. Some people avoid things like parties and going out in case they have an emergency. But these activities will cheer you up. If you miss out, you may feel lonely. When you go to parties and the like, it helps if you have one or two people with you who know about your situation and can help if you do run into problems.

You may be interested in exploring complementary therapies alongside conventional treatments.

Bowel problems are often worse when you’re worried and anxious. Treatments like aromatherapy, reflexology, relaxation and massage can help you relax and relieve pain. Some people have found hypnotherapy particularly helpful.

Sometimes, things may begin to get you down. You can always contact your CGD specialist nurse for advice and support.

It can sometimes be quite difficult to tell if your stools are changing and if what you are doing differently or medicines you’re taking are working.

To help, you could start keeping a stool chart recording the number of bowel actions you have each day and other things, such as diet or medicines which may have affected the way your bowels behave. Your doctor or nurse will be able to give you a stool chart.

• Anus –  the opening of the back passage through which stools are passed
• Biopsy – a tiny piece of tissue removed from the body that can be examined under a microscope in the laboratory. Taking a biopsy from the gut doesn’t hurt and helps the doctors to work out what’s causing problems
• Colon – also called the ‘large bowel’ or ‘large intestine’. This is the lower part of your bowel where stools are made solid
• Fissure – a small crack in the skin, sometimes found around the anus
• Fistula – a small, sore opening sometimes found around the anus in people with CGD with bowel inflammation
• Rectum – the last part of the large bowel, just inside the anus
• Skin tags – small bits or tags of skin sometimes found around the anus
• Stricture – a narrowing of the bowel