If you have Ulcerative Colitis (UC) or Familial
Adenomatous Polyposis (FAP), surgery to remove the
colon and rectum will cure the disease and prevent the
risk of colon cancer. For anyone who undergoes
proctocolectomy (complete removal of the colon and
rectum) there are three options for dealing with the issue
of evacuation of intestinal waste. The operation that has
been done since the 1950s involves removing the large
intestine, rectum and anal canal with anus, and creating a conventional ileostomy. This is called the Brooke ileostomy. In this operation the end of the small intestine is brought through an opening made in the abdominal wall and skin, and the intestine is sutured to the skin in a way that creates a spout. This means the end of the intestine projects ¾ inch above the skin. Since the small intestine is a continuous flow system, anyone with an ileostomy must wear an appliance ("the bag") over the stoma at all times. If any intestinal waste gets onto the skin it will cause a burn. Waste from the large intestine (feces) does not damage the skin, but small intestinal waste is caustic and erodes the skin. The spout of a conventional ileostomy allows the waste to flow directly into the appliance and not come in contact with the skin.
People with an ileostomy can and usually do lead a normal life. They make a good emotional and psychological adjustment to wearing an appliance, and they do well physically. A person with a Brooke ileostomy can do everything from sky diving to scuba diving, and can be comfortable with intimacy and sex as well. Most people empty their bag 4-8 times a day, must wear clothing that allows room for the appliance, and sometimes must wake at night to empty the bag. The incidence of reoperation for ileostomy problems (stricture or stenosis, retraction, prolapse, hernia) is 11% during one’s lifetime. Many people however do not have an ideal outcome with their traditional conventional ileostomy.
A different option than a conventional ileostomy is the continent ileostomy. This was developed by Dr. Nils Kock in Sweden in the 1960s. It has been modified to decrease complications and failures, most significantly by Dr. William O. Barnett who added the intestinal collar and lateral pouch design. This is referred to as a Barnett Continent Intestinal Reservoir or BCIR. With a continent ileostomy, there is a stoma but only mucous comes out. No gas or waste will come out until a catheter is painlessly inserted through the stoma opening into the internal pouch, with the waste flowing out the catheter into the toilet. This is usually done 2-5 times a day. A small bandaid patch is worn over the stoma to absorb mucous.
A final option to a conventional ileostomy is the ileoanal pouch, also referred to as the J-pouch, the pull-through, and the IPAA (ileal pouch anal anastomosis). With this operation the colon and upper rectum is removed leaving the anal canal and anus with the sphincter muscles intact. A pouch is fashioned from the small intestine and sutured to the lower rectum. With this operation people get to go the bathroom in the normal way, without any supplies or tubes. A good result involves having a bowel movement 4-7 times a day, and being able to delay evacuation up to 45 minutes from first feeling the urge. Problems with this operation include incontinence (stool or gas escape without intending it to happen), very frequent bowel movements, or symptoms from the remaining lower rectum. If a patient with an ileoanal J-pouch has a poor outcome, they have the option of converting to a Continent Ileostomy or a conventional ileostomy.