About IBD

IBDSuperHeroes is a patient-led project. We are not medical professionals. Whilst we try to keep this page up-to-date, please be aware that we are a voluntary group of patients.

Inflammatory bowel disease, more commonly known as IBD, is an immune-mediated inflammatory disease (IMID). In lamens terms, this means that your immune system attacks the healthy cells in your body by mistake. There's no cure for IBD, but treatments are available to reduce symptoms and induce remission (symptom-free periods). Some people can settle on a treatment fairly quickly and experience long periods of remission. For others, the fight for remission is long and tough. 

Crohn's disease and ulcerative colitis are the two most common forms of IBD. Whilst the term inflammatory bowel disease encompasses both of these, they are two different diseases with a variety of differing symptoms. Crohn's disease and ulcerative colitis may affect people differently. This can make it particularly difficult to treat, as what works for one patient, may not work for another. It's not just inflammation in the digestive system, but ulceration, which can cause additional pain and blood in the stool (poo).

If you're struggling with symptoms and need an understanding ear, the private IBDSuperHeroes group is open to all. 💜

Common symptoms of inflammatory bowel disease

As mentioned above, symptoms may vary from person to person. You may experience all or just a few of these more common symptoms.
  • Abdominal cramping
  • Changes in bowel habits - frequent and urgent diarrhoea, or constipation
  • Blood and/or mucous in your stool 
  • Mouth ulcers
  • Chronic fatigue/lethargy
  • Anaemia (low iron levels in your blood)
  • Fever
  • Inflammation elsewhere in the body (such as joints or eyes) 
  • Weight changes, more commonly loss
  • Lack of appetite 

Most people assume IBD is simply a "toilet disease". In reality, IBD has a vast array of extraintestinal manifestations, meaning symptoms which are situated or occurring outside of the intestines.

Conditions and issues known to be associated with IBD; that occur beyond the gastrointestinal tract (mouth to anus), such as:
Musculoskeletal: joint and muscle pain
Dermatological: skin inflammation, rashes, and irritation
Hepatobiliary: inflammation of liver, bile ducts, and gall bladder
Ocular: eye inflammation (uveitis or iritis)
Kidney Stones
Fistulas
Deep Vein Thrombosis
More detailed information can be found here.

Check out our FAQ page for Frequently asked questions and IBD myths. You may also find this blog useful: "What people with IBD should know".

What causes inflammatory bowel disease?

IBD continues to be a bit of a mystery, with several possible causes. That's why we're so passionate about funding IBD research, so we can get to the bottom (no pun intended) of it! 

Genetics: Imagine your genes as a blueprint for your body. Sometimes, people inherit certain gene combinations that make them more likely to develop IBD. It's like having a family recipe for IBD.

Immune system: Picture your immune system as a superhero that fights off germs and keeps you healthy. In IBD, this superhero gets a bit too enthusiastic and starts attacking your gut, causing inflammation and damage. 

Environmental triggers: Think of your gut as a sensitive garden. Certain things in the environment, like stress, diet, or infections, can act as weed killers, disrupting the delicate balance of good and bad bacteria in your gut and triggering inflammation.

Dysfunctional gut barrier: Your gut has a protective barrier that keeps harmful stuff out. In IBD, this barrier can become weak, allowing bacteria and other nasties to sneak in and cause trouble.

Microbiome Mayhem: Your gut is home to trillions of bacteria, fungi, and other microorganisms, collectively known as the microbiome. Sometimes, an imbalance in this bustling microbial community can contribute to IBD. 

Put it all together, and you've got a perfect storm brewing in your gut, leading to the inflammation and symptoms of IBD.

Crohn's disease and ulcerative colitis - a brief overview





Indeterminate colitis / Inflammatory bowel disease unclassified 

Sometimes called inflammatory bowel disease unclassified (IBD-U). Indeterminate colitis means a patient definitely has IBD, but it's unclear whether it's Crohn's disease or ulcerative colitis. It's hoped that further investigations will ultimately lead to a definitive diagnosis.

This diagnosis can confuse patients because the term "colitis" was used. This can lead them to believe that their diagnosis is ulcerative colitis. This is why many specialists prefer using inflammatory bowel disease unclassified.

Crohn's Disease

Crohn’s disease is a condition that causes inflammation of the digestive system or gut. Crohn’s can affect any part of the gut, though the most common area affected is the end of the ileum (the last part of the small intestine), or the colon.

The areas of inflammation are often patchy with sections of normal gut in between. A patch of inflammation may be small, only a few centimetres, or extend quite a distance along part of the gut. As well as affecting the lining of the bowel, Crohn’s may also go deeper into the bowel wall.

The main types of Crohn's Disease:

Terminal ileal and ileocaecal Crohn's disease

Crohn’s in the ileum (the last part of the small intestine) may be called ileal or sometimes ‘terminal ileal’ Crohn’s – because it is affecting the terminus or end of the ileum. If it also affects the beginning of the large bowel it is known as ileocaecal Crohn’s. With this type of Crohn’s, you may feel pain in the lower right side of your abdomen, especially after eating. There is often weight loss, and you may have diarrhoea. Because Crohn’s in the ileum can make it difficult for your body to absorb bile salts, and bile salts can irritate the bowel lining, the diarrhoea may be watery. It is unlikely to be bloody, as any blood lost will be digested by the time it reaches the rectum. About four out of 10 people with Crohn’s have ileal or ileocaecal disease.

Small bowel Crohn's disease

Abdominal pain and diarrhoea are also common symptoms of Crohn’s further up the small bowel. Again, the diarrhoea is unlikely to be blood-stained, but you may still have weight loss and anaemia. Nearly a third of people with Crohn’s have it in the small bowel.

Colonic Crohn's disease / Crohn's Colitis

Crohn’s disease in the colon (large intestine or large bowel) is often called Crohn’s Colitis. This is also a common form of Crohn’s disease. The main symptom tends to be blood-stained diarrhoea. Because of the inflammation, the colon cannot hold as much waste as normal and you may have very frequent bowel movements, especially if your rectum is inflamed.

Gastroduodenal Crohn's disease

Gastroduodenal Crohn’s disease affects the stomach and duodenum (the first part of the small intestine). Those with this form of Crohn’s disease often experience nausea, lack of appetite, and weight loss. People who have gastroduodenal Crohn’s disease may also vomit if small parts of the bowel become blocked. This is because of intestinal inflammation.

Perianal Crohn's disease

Crohn’s in the area around the anus (back passage) can occur on its own or at the same time as inflammation in other parts of the body. It can cause a number of symptoms such as:
Fissures – these are tears in the lining of the anal canal (back passage), which can cause pain and bleeding, especially during bowel movements.
Skin tags – small fleshy growths around the anus.
Haemorrhoids – swollen areas in the anal canal.
Abscesses – collections of pus that can become swollen and painful. They are often found in the area around the anus and can cause a fever or lead to a fistula.
Fistulas – these are narrow tunnels or passageways between the gut and the skin or another organ. In perianal Crohn’s, fistulas often run from the anal canal to the skin around the anus. They appear as tiny openings in the skin that leak pus or sometimes faecal matter. They can irritate the skin and are often sore and painful, but can usually be treated with medication and/or surgery.

Oral Crohn’s

Crohn’s can occasionally affect the mouth. True oral Crohn’s, which typically causes swollen lips and mouth fissures, is rare. However, about one in five people with Crohn’s has a tendency to develop mouth ulcers.

Ulcerative colitis

Ulcerative colitis (UC) is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, tiny ulcers develop on the surface of the lining and these may bleed and produce pus.

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 UC it affects the whole colon it may be called total colitis or pancolitis.

The main types of Ulcerative Colitis:

Proctitis

In proctitis, only the rectum is inflamed. This means that the rest of the colon is unaffected and can still function normally. For many people with proctitis, the main symptom is passing fresh blood or blood-stained mucus. You may get diarrhoea, or you may have normal stools or even constipation. You may also feel an urgent need to rush to the toilet. Some people with proctitis often feel that they have an urge to pass a stool, but cannot pass anything because the bowel is actually empty. This is called tenesmus. In some people, the sigmoid colon (the short curving piece of the colon nearest the rectum) may also be inflamed – a form of UC sometimes known as proctosigmoiditis. The symptoms are similar to those of proctitis, although you are less likely to have constipation with proctosigmoiditis.

Left-sided (or distal) colitis

In this type of UC, the inflammation starts at the rectum and continues up the left side of the colon (also known as the distal or descending colon). Symptoms include diarrhoea with blood and mucus, pain on the left side of the abdomen, urgency, and tenesmus (throbbing or cramping in the rectum).

Extensive / Total colitis / Pancolitis

Extensive colitis extends along most of the colon. Extensive colitis that affects the whole colon may be called total colitis or pancolitis. Extensive or total colitis can cause very frequent diarrhoea with blood, mucus, and sometimes pus. You may also have severe abdominal cramps and pain, tenesmus, and weight loss. In milder flare-ups, the main symptom may be diarrhoea or looser stools without blood. Very rarely, when the inflammation is severe, digestive gases may get trapped in the colon, making it swell up. This is known as toxic megacolon and it can cause a high fever as well as pain and tenderness in the abdomen. It is essential to get treatment quickly for this condition, as it may need surgery.

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