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An ESCP Guide for Patients

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What is ulcerative colitis?

Ulcerative colitis (UC) is a long-term condition that causes inflammation and ulcers or sores in the large intestine (colon). It is a chronic and incurable inflammatory bowel disease (IBD) that affects only the inner lining of the bowel.

Ulcerative colitis is characterised by unpredictable and disabling periods of ‘flare’ that have a cumulative damaging effect on the bowel. The symptoms of a flare vary widely, but often include urgent, watery diarrhoea (frequently in excess of ten bowel motions per day, with blood, and overnight), cramping, abdominal pain and severe tiredness.

The disease usually starts in the rectum and spreads upwards through the colon.

Ulcerative colitis thus often follows a pattern of:

  • Flare-ups: when symptoms worsen
  • Remission: when symptoms improve or disappear

Types of ulcerative colitis

Types of ulcerative colitisproctitis: proctosigmoiditis, pistal colitis, pxtensive colitis, pancolitis

The disease is classified based on the area affected:

  • Ulcerative proctitis: affects only the rectum
  • Proctosigmoiditis: affects the rectum and lower colon
  • Left-sided or distal colitis: affects the left side of the colon
  • Extensive colitis or pancolitis: involves most of or the entire colon

How it affects the body

Graphic showing the ways that ulcerative colitis affects the body: fatigue, skin sores, loss of appetite, severe cramping, urgency to defecate, rectal bleeding and pain, bloody diarrhoea, abdominal pain, joint pain, weight loss, fever

Severity of the disease

  • Mild: fewer than 4 bowel movements per day, no fever, mild pain
  • Moderate: more than 4 bowel movements per day, bloody stools, mild fever
  • Severe: frequent, painful bowel movements, fever, weight loss

Causes and risk factors of ulcerative colitis

The exact cause of UC is not known, but it is believed to be due to an abnormal immune system response. The following factors may contribute:

  • Genetics: a family history of UC may increase the risk
  • Immune system: the immune system may mistakenly attack the healthy cells in the colon
  • Environmental factors: diet, stress, and gut bacteria imbalances may play a role

Symptoms of ulcerative colitis

The symptoms depend on how severe the inflammation of the colon is.

Common symptoms (mild disease or remission)

  • Diarrhoea
  • Frequent and urgent need to pass stool
  • Feeling like you need to go but can’t (tenesmus)
  • Mild abdominal cramping

Symptoms of moderate to severe disease

  • Blood or mucus in stool
  • Severe abdominal cramps
  • Fatigue (feeling very tired)
  • Nausea

Treatment options for ulcerative colitis

Medical therapy

Medications help control inflammation, manage symptoms, and prevent flare-ups. Your doctor will tailor treatment based on your specific condition.

  • Aminosalicylates (5-ASAs): reduce inflammation
  • Corticosteroids: used for short-term symptom relief
  • Immunosuppressants: help control the immune system
  • Biologic therapies: target specific proteins causing inflammation

Surgical treatment

About 30% of patients with ulcerative colitis will need surgery at some point. Surgery may be planned or done in emergencies.

When is surgery needed?

  • Medications are no longer effective
  • Severe side effects from medication
  • Increased risk of colon cancer, e.g. when polyps develop or with long-standing UC (>10 years)
  • Poor quality of life due to invalidating symptoms
  • Emergency situations that do not respond to medical therapy such as:
    • Severe bleeding
    • Bowel perforation (hole in the bowel)
    • Toxic megacolon (dangerously swollen colon)

Surgical procedures

There are two surgical procedures for ulcerative colitis:

  • Proctocolectomy with ileal pouch-anal anastomosis (IPAA)
  • Total proctocolectomy with permanent ileostomy

Proctocolectomy with ileal pouch-anal anastomosis (IPAA)

During this procedure the surgeon removes the colon and rectum but preserves the anus. A pouch is created from the small intestine to store stool, allowing normal bowel movements.

The procedure is often done in several stages (multiple surgeries):

First stage:

  • The large intestine is removed
  • A pouch is created from the small intestine and connected to the anus
  • A temporary ileostomy (stoma) is created. This means part of the small intestine is brought through an opening in the skin to allow stool to pass into a bag. A temporary ileostomy is usually placed on the right lower side of the abdomen, and this approach allows the ileo-anal connection (anastomosis) to heal.

Second stage (after 2-4 months):

  • The ileostomy is closed after ensuring proper healing of the ileo-anal connection (anastomosis)
  • The pouch starts working as a new rectum

Recovery after surgery

  • Pain management
  • Encouragement to walk for faster recovery
  • Diet starts with liquids, then solid food
  • Hospital stay of about a week
  • Initially, more frequent and liquid bowel movements, improving over time

Possible complications

  • Pouch leakage: 'leakage' after ileo-anal pouch surgery means that a small amount of fluid or waste is escaping from the area where the pouch was joined to your body. This can happen if the connection (called the anastomosis) doesn’t heal perfectly. It’s a known but uncommon complication. If leakage occurs, it can cause pain, fever, or infection, and it may need antibiotics or further treatment. The surgical team will monitor you closely for signs of this and treat it quickly if it happens.
  • Pouchitis: this is the most common complications and is an infection of the newly formed pouch. It usually responds well to antibiotics
  • Bleeding or infection: this could occur in the abdomen, at the site of the connection of the pouch to the anus/rectum or at the wound
  • Other infections: lung or urinary tract infections
  • Pouch failure: a small percentage of patients might experience pouch failure. Meaning the pouch does not function or does not function properly to create an acceptable quality of life. If this happens, another operation may be needed to remove the pouch and create a permanent stoma.

Total proctocolectomy with permanent ileostomy

This procedure removes the colon, rectum, and anus. The small intestine is permanently brought through an opening in the abdomen (stoma) to collect stools in a bag.

Key differences from IPAA Surgery

  • No pouch is created
  • The stoma is permanent
  • The anus is completely removed and closed with stitches

Recovery and possible complications

  • Similar recovery process as IPAA
  • Possible complications:
    • Bleeding
    • Infections (abdominal, wound, lung, urinary)
    • Slow healing of the perineal wound (after anus removal)

When to see a doctor

Many ulcerative colitis patients may need surgery at some point. Seeing a colorectal surgeon early can help you:

  • Understand surgical options before an emergency arises
  • Plan surgery to improve your quality of life
  • Make informed treatment decisions

If you have any questions, speak with your doctor or colorectal surgeon for personalised advice.


Disclaimer

The information provided here is general and hopes to correctly inform the patient to the extent possible. However, this document cannot discuss all aspects of a specific condition or procedure, or of the individual patient.

The decision on which procedure will give you the best result is made by your doctor or colorectal surgeon during consultation and based on shared and informed decision-making with the patient.