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A patient journey for inflammatory bowel disease

In the UK, it is estimated that roughly one in 210 people live with inflammatory bowel disease (IBD). The condition, which affects the gastrointestinal tract (gut), affects men and women equally and is usually diagnosed when people are in their late teens or early 20s.

The term inflammatory bowel disease is used to describe two main conditions: Crohn’s disease and Colitis.

The two conditions share similar symptoms:

  • Recurring or bloody diarrhoea
  • Weight loss
  • Extreme tiredness
  • Pain, cramping and bloating

IBD should not be confused with IBS (irritable bowel syndrome). Although the two share similar symptoms, IBS is not an inflammatory condition and often there is no known cause for IBS. Although we still don't fully know why some people develop IBDs either, research suggests that the following factors might play a role: 

  • Genetics - the genes that you inherit from your parents may make you more susceptible to developing Crohn’s disease
  • Immune system - inflammation may be caused by your immune system having an abnormal reaction to the healthy bacteria in your gut
  • Previous infection - a previous infection can cause an abnormal response from the immune system
  • Smoking - smokers can experience more severe symptoms than those who do not smoke
  • Unknown trigger - such as a virus, bacteria, diet, stress or something else

Crohn’s Disease

Crohn’s Disease is a chronic (long term) condition that causes inflammation in the digestive system (gut). It most commonly occurs in the small intestine although the disease can affect any part of (or the whole of) the gastrointestinal tract - from your mouth to your anus (back passage).

People with Crohn’s Disease will often go for long periods without experiencing any symptoms of the disease (called remission). When they're not in remission, however, they can really struggle with their symptoms (relapse) and may require medical treatment.

Visiting the GP

If you're experiencing symptoms similar to those listed above, it is important to make an appointment to speak with your doctor. They'll ask questions to see if there is a pattern between your symptoms and your lifestyle. They may ask you questions about your diet, lifestyle, family history, whether you have travelled abroad recently, and whether you are on any medication. It may be useful to keep a diary of your symptoms (including any potential triggers, times of day or night when symptoms are worse, or any other health issues which have arisen) in the weeks leading up to your appointment. This will help you to explain what you are experiencing and also help your doctor make decisions on your diagnosis.

There are a number of non-invasive tests that your doctor may decide to do during the appointment. These can include:

  • Checking your pulse and blood pressure
  • Measurements of your height and weight
  • Your temperature
  • Checking your tummy for tenderness (a sign of inflammation)

Your GP may also arrange for you to have a blood test and ask you to collect a sample of your stool (poo) for examination in a laboratory. The results of these tests will determine whether you need to be referred to a specialist in digestive health (gastroenterologist).

If necessary, further testing may be carried out. Your specialist will be able to discuss this with you in further detail. The types of tests which may be carried out at your local hospital or doctor surgery include:

  • Colonoscopy - a very thin flexible tube (an endoscope) is inserted into the back passage (rectum). The endoscope has a light and camera on the end and images are sent to a screen. These can show the level of inflammation and how far the inflammation extends. The endoscope can also be fitted with tools that allow for a tissue sample to be collected (known as a biopsy). This can then be checked under a microscope for cell changes.
  • Magnetic Resonance Enterography (MRE) and Computerised Tomography Enterography/Enterocyclis (CTE) scans - these scans are used to get a better look at the small intestine where Crohn’s Disease is suspected. You will first be asked to drink a harmless liquid called a contrast agent (enterography) or the contrast agent may be given through a tube that is inserted into your nose and leads to your small intestine. During an MRE scan, magnetic fields and radio waves are used to produce a detailed image of your intestine. A CTE scan uses several x-ray images that are put together to form a similarly detailed image. Your doctor will decide which form of imaging is most suitable for you.
  • Wireless capsule technology - A small camera has been designed which contains a colour camera, light source and battery. It is taken orally (by mouth) and is about the size of a large vitamin pill. The camera records images of your digestive tract by taking two images every second for eight hours (approximately). These images are transmitted to a small recorder which you will wear around your waist for the duration of the test. As this is a relatively new test it may not be available in your area; your consultant will be able to discuss other options with you.

Treating Crohn’s Disease

As Crohn’s Disease is not curable, your doctor will focus on managing your symptoms and increasing the length of time you are in remission.

There are several options available to relieve symptoms of moderate to severe Crohn’s Disease and these include:

  • Corticosteroids - In most cases a course of steroids will be offered first. This will aim to reduce inflammation. While this type of medication is very useful for reducing inflammation, there are common and significant side effects such as: weight gain, swelling of the face and increased risk of infection. It is important to remember that you will only be prescribed this medication if the potential benefits outweigh possible side effects.
  • Immunosuppressants - A type of medication designed to suppress or reduce the strength of your immune system. This form of treatment is not suitable for everyone and regular blood tests are required to monitor whether there are any side effects from taking the drugs.

If your Crohn’s Disease is considered severe, you may be advised to try biological therapies. These are a form of very strong medication which are created using naturally occurring biological substances, such as antibodies and enzymes. The biological therapies approved for use in the UK are administered either intravenously (through a needle inserted into a vein in your arm) or by an injection into your arm. Your doctor or consultant will talk to you more about this type of treatment should they decide it is necessary for you.

Surgery may also be considered if you have not responded to other treatments or if you have complications which have happened as a result of the disease (such as anal fistulas - a small tube that develops between the end of the bowel and the skin near the anus, or narrowing of the intestine). Surgery options include a bowel resection (removal of the inflamed area of intestine and attaching the healthy sections together) or an ileostomy (a procedure which disconnects the ileum, the end of the small intestine, from the colon and reroutes it through a hole made in the abdomen known as a stoma. A bag is attached externally and is used to collect waste products.

Ulcerative Colitis

Ulcerative Colitis (UC) is a condition that causes inflammation of the rectum and colon (large bowel). Small ulcers can occur on the lining of the colon which can bleed and produce pus. The main symptoms are:

  • Diarrhoea which contains blood or pus
  • A frequent and urgent need to pass stools
  • Dehydration
  • Fever
  • Pain in your abdomen (tummy)

As with Crohn’s, UC is a chronic condition and you may experience periods where the symptoms are not so bad and times when symptoms are debilitating and may require medical treatment.

It is currently thought that around 1 in 420 people in the UK are living with UC. We don't fully know why some people develop UC while others don't. It is thought that genetics may play an important part and there is also some research that suggests there are unknown triggers such as viruses, bacteria and diet. Stress is believed to be a huge factor in flare-ups of UC.

Visiting your GP

If you think you may have symptoms of ulcerative colitis, you should make an appointment to visit your GP. They will ask you about the symptoms you have been experiencing, day-to-day health and your medical history. The tests your GP may carry out are very similar to that of Crohn’s disease. Your doctor may first perform a physical examination to check for tenderness in your tummy and look at your skin tone to see if you seem unusually pale - often a sign of anaemia (low iron levels). Blood tests and stool samples may also be taken.

If your doctor suspects you have UC they may refer you for a test called a sigmoidoscopy, which can confirm a diagnosis of UC and show the extent of the inflammation in the bowel. The test is carried out by passing a thin flexible tube containing a camera (called a sigmoidascope) into your back passage (rectum). A small tissue sample may also be collected at this point, which is sent away to be tested (known as a biopsy). People can experience some discomfort during this procedure so you will be offered a sedative. If it is thought the UC has spread beyond your colon, you will require another test called a colonoscopy (a longer thin tube with a camera attached, inserted into your rectum which can look at the large bowels, colon and rectum).

Treating Ulcerative Colitis

UC is often managed very well by medication alone. However, if you do not respond to medication, surgery may be necessary. In these cases, UC is cured by the removal of most or all of your large intestine.

Types of medication can include:

  • Aminosalicylates - (5 - ASAs) - a group of medicines used to treat inflammatory gut diseases and in particular to lengthen remission periods of UC or to treat a UC flare-up.  It is not entirely clear how this medication works but it is thought it changes the way certain chemicals are released in the gut
  • Steroids - Corticosteroids are used to reduce inflammation
  • Immunosuppressants - used to suppress the immune system and treat inflammation

Living with Ulcerative Colitis

If your symptoms are controlled well with medication, you should find your day-to-day quality of life is not severely impacted. If medication is not controlling your flares-ups and your doctor decides it best to carry out surgery, your condition may then be cured (if the entire colon is removed). However there are risks associated with surgery and depending on the type of surgery you have, you may be fitted with a permanent or semi-permanent external bag attached to a stoma, which may have different impacts on your day to day life. Your doctor will be able to discuss your options with you and answer any questions or concerns which you may have.

You can also find support from our talkbowel forum.

Sources used in writing this article are available on request.

 
The Information Standard

Last revised: 17 April 2020

Next review: 17 April 2023