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How does Ulcerative Colitis affect the gut?

Ulcerative Colitis (UC) causes inflammation and ulceration of the mucosa (inner lining) of the large bowel. These raw areas or ulcers may bleed or produce pus. As it becomes inflamed and sore, the colon is less able to absorb water or to hold as much waste. It also tends to produce more mucus (a natural lubricant). This leads to more frequent and looser bowel actions, experienced as urgency and diarrhoea. Other common UC symptoms include crampy abdominal pain, blood and mucus in stools, fatigue, a lack of energy, and weight loss. If you lose a lot of blood you may also develop anaemia (a reduced number of red blood cells) which can also make you feel very tired.

UC sometimes affects just the rectum, in which case it is called proctitis. It may also involve part or all of the colon. When the descending or ‘distal’ colon is involved it is called distal colitis, and when it affects most of the colon or the entire colon, it is often known as extensive or pancolitis (total colitis).

UC is sometimes described as a chronic condition. This means that it is ongoing and usually lasts throughout your life, but you may have long periods of good health when the disease is in remission, alternating with relapses or ‘flare-ups’ when the symptoms are more severe. Treatment for UC may be medical or surgical, or a combination of both.

When is surgery necessary?

Medical treatment for IBD has improved considerably over the years, and a much wider range of drugs is now available for UC. Even so, about one in four people with UC will require surgery at some time during their illness. To some extent it may depend on the type of UC. Surgery is seldom needed for proctitis, but is much more likely to become necessary for people with extensive or total UC.

Some of the most common reasons for surgery are outlined below.

• Poor response to long term medical treatment

UC is often well treated with drugs, but sometimes medical therapies fail to control the inflammation. If you experience repeated flare-ups with troublesome symptoms, and these seriously affect your quality of life, you may wish to consider surgery.

• Emergency problems

Surgery may sometimes be recommended for people with serious acute symptoms, such as severe diarrhoea with bleeding, dehydration and a raised temperature, which do not respond to medical treatment even when treated in hospital. Urgent surgery may also be needed for rare complications such as toxic megacolon (very severe disease of the colon) or a perforation (a hole or tear) in the wall of the colon.

• Cancer of the large bowel

Ulcerative Colitis is not a form of cancer. However, if you have had severe UC affecting all or most of the colon and this has lasted for at least 8-10 years, there is a slightly increased risk of bowel cancer. You may be offered regular colonoscopies to check for this. If cancer is found, this may require surgery.

Which are the most common operations?

The operations most likely to be carried out for Ulcerative Colitis are described below.

Proctocolectomy with ileostomy

In this operation the entire colon is removed, together with the rectum and the anal canal. The surgeon then brings out the end of the small intestine through an opening in the wall of the abdomen. This is an ileostomy or stoma. An external bag is then fitted onto the opening to collect the waste. This can be emptied or changed as necessary.

Restorative Proctocolectomy with ileo-anal pouch

This procedure is commonly called pouch surgery, but may also be described as IPAA (Ileo pouch- anal anastomosis) surgery.

It generally requires two operations. In the first and main operation the surgeon removes the whole colon and the rectum, but leaves the anus. Then a pouch is made using the ileum (the lower end of the small intestine) and this is joined to the anus. Finally, a looped section of the small intestine is brought out onto the external wall of the abdomen through a temporary ileostomy. This allows the waste from digestion to be collected in a stoma bag until the newly-formed pouch has had a chance to heal – which generally takes about three months. This temporary ileostomy can then be closed in a second operation. The main advantage of a pouch is that faeces (stools) can be passed through the anus in the normal manner, although usually more frequently. Many people with a pouch have about six bowel movements a day, plus one or two more at night.

Colectomy with ileo-rectal anastomosis

This operation is much less common as it is only suitable for a small number of people with UC. In this the colon is removed, but instead of creating an ileostomy, the surgeon joins the end of the small intestine directly to the rectum. This avoids the need for an ileostomy. However, this operation will only be recommended if there is little or no inflammation in the rectum and no long-term risk of developing rectal cancer.

Colectomy with ileostomy

If you are having emergency surgery for UC you may have a colectomy with an ileostomy – which usually allows for the possibility of pouch surgery at a later date. In this operation the surgeon removes the colon but leaves the rectum. Then, as in a proctocolectomy, the end of the small intestine is brought out through an ileostomy and an external bag is fitted onto this opening to collect the waste from digestion. This ileostomy may be temporary or can become permanent.

The upper end of the rectum is either closed or brought out to the surface to another temporary stoma. This is called a mucous fistula and is needed because the rectum may produce mucus for a while.

Depending on your individual medical condition, once you have recovered from the colectomy you may be able to have pouch surgery as described earlier. In this, the rectum will be removed and a pouch made from the ileum (the last part of the small intestine) and connected to the anus. Alternatively, you may decide on a permanent ileostomy.

Stomas

As described above, sometimes in surgery for UC the intestine is brought to the surface of the abdomen and an opening is made so that digestive waste products (liquid or faeces) drain into a bag, rather than through the anus. Because the part of the intestine brought to the surface is the ileum (the lower end of the small intestine), this procedure, and the end of the intestine connected to the opening, is known as an ileostomy. In some operations for certain other conditions, including Crohn’s Disease, the large intestine or colon is brought to the surface and connected in a similar way, and this is known as a colostomy. Both types of opening are also called stomas.

Most stomas are about the size of a 50p piece and pinkish red in colour. Because the contents of the small bowel are liquid and might irritate the skin, an ileostomy usually has a short spout of tissue, about 2-3cm in length. Depending on the type of stoma bag used, ileostomy bags usually have to be emptied four to six times a day and changed two or three times a week.

Laparoscopy

Some of the operations outlined above, including pouch surgery, may now be carried out using laparoscopy (minimally invasive surgery). This is also known as ‘keyhole surgery’.

However, laparoscopic surgery may not be available in all centres and may not be appropriate for some procedures, particularly if you have already had abdominal surgery.

Are there risks to surgery?

Ulcerative Colitis is a very individual condition and the risks and benefits of different types of treatment will vary from person to person. Your IBD team should be able to help you weigh up what will be best for you.

Surgery for UC, like all surgery, will carry some general risks, including those linked to having a general anaesthetic. There is also a small risk that some operations may lead to complications such as infections. Particular operations may have other risks which your surgical team will be able to tell you more about.

What are the advantages of surgery?

Unlike Crohn’s Disease, which can recur after surgery, Ulcerative Colitis cannot recur once the colon has been removed, and so is ‘cured’ by surgery. This should mean:

• relief from pain
• relief from symptoms such as urgency and diarrhoea
• being able to stop taking drugs which may be causing side effects
• feeling able to lead a fuller life, for example being able to leave the house in a more relaxed frame of mind.

Getting used to having a stoma or a pouch will take time, and for some, can be a challenge. However, many people who have had such operations feel that, in general, they have a better quality of life than before their surgery.

© Crohn’s and Colitis UK 2015