Inflammatory bowel disease (IBD) causes chronic inflammation in the digestive tract, which damages the digestive tract and can lead to complications. The two main forms of IBD are Crohn’s disease (CD) and ulcerative colitis (UC). The inflammation in UC is confined to the large intestine (colon) and rectum, but the inflammation in CD can occur anywhere along the digestive tract, causing damage from the mouth to the anus. In people with IBD who have experienced severe disease affecting the large intestine and the rectum despite trying different types or combinations of medications, a type of surgery called a proctocolectomy may be an option. This procedure involves surgically removing the colon, the rectum, and the anus.1,2
If a person has severe disease that affects the large intestine but not the rectum, then a partial or total colectomy may be recommended instead. Either part of the colon or the entire colon is removed during a colectomy, but not the rectum or anus.
Because UC only affects the colon and rectum, a proctocolectomy effectively cures UC. This is not the case with CD, because the inflammation in CD can affect other areas including the small intestine.1
What is an ileostomy?
Because the proctocolectomy procedure involves removing the rectum and anus as well as the large intestine, patients who have this surgery also need to have an ileostomy.2,3 Because they will no longer be able to pass stool through the anus, the surgeon creates an end ileostomy.
During an end ileostomy, the colorectal surgeon makes a small opening in the patient’s lower abdomen and then brings the end of the ileum through that opening.The ileum is the part of your small intestine farthest from your stomach. The opening is called a “stoma,” and it is usually about the size of a quarter. The stoma allows stool to pass out of the body.
After the surgery, patients wear a pouch that is worn over the stoma, which is used to collect stool that has passed through the digestive tract. The pouch usually needs to be emptied of several times a day.
What happens after a proctocolectomy with ileostomy?
After having a proctocolectomy with ileostomy, patients will typically spend about 3-7 days of recovery time in a hospital, although some patients may need to stay longer. Patients can usually begin eating again 2 days after surgery, which is when the bowels begin "waking up." Once the intestines and surgical wounds have fully healed, patients are typically able to engage in most activities they were doing before surgery.2Healthcare providers will provide patients with advice about getting used to using the ileostomy bag, as well as dietary or nutritional recommendations that can help to ease the transition.
What are some risks associated with a proctocolectomy with ileostomy?
Risks and possible complications include common risks for any type of surgery, such as:2
- Blood clots
- Adverse reactions to anesthesia
Risks specifically associated with proctocolectomy with ileostomy include:2
- Bleeding in belly
- Tearing near wound
- Scar tissue in belly
Patients should let their healthcare providers know if no stool has passed into the ostomy pouch for 4-6 hours, or if they are experiencing cramps or nausea. This may be a sign of blockage due to food or scar tissue in the small intestine.
Living with an ostomy
After recovering, patients who have undergone proctocolectomy with ileostomy can often take part in almost all activities they were able to prior to surgery. Most jobs will not be affected by an ileostomy, although patients may be recommended to avoid heavy lifting. An ileostomy does not affect intimacy or pregnancy . Patients can maintain normal sexual activity after undergoing an ileostomy.2,4
An ileostomy can greatly improve the quality of life for patients with severe IBD. However, it can take some time for a patient to become comfortable after having an ileostomy. Some people may be self-conscious of their ostomy pouch, but in most cases they are the only ones who know it is there. Any type of clothes can be worn with an ostomy bag securely fastened underneath. Depending on the location of the ostomy bag, some clothes may become more comfortable than others.2,4
A good way to learn more about living with an ileostomy or an ostomy bag is to get in touch with other people with ostomies. This can be the best way to get advice from people who have gone through, or are currently going through, a similar experience.