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Ulcerative colitis and Familial Adenomatous Polyposis (FAP) affect only the lining of the large bowel, therefore the colostomy and ileoanal reserve procedure (IAR) can cure these diseases. Surgical treatment includes removal of the colon (colostomy) and creation of a temporary ileostomy stoma. We have found that there are fewer complications when we create a temporary ileostomy stoma.
Surgery for creation of an internal J-pouch or reservoir can be performed in either two or three operations referred to as "stages." Your medical care team will decide if the three stage procedure or the two stage procedure is best for you. This recommendation will be base on your specific condition and your health. Your surgeon and your Gastroenterology (GI) doctor will discuss this with you.
You and your family may find it helpful to discuss the operation with someone else who has already had the procedure. Your surgeon or outpatient nurse will make every effort to match you up with someone of similar age and gender to speak with either by phone or in person.
Boston Children's Hospital's approach to total colectomy for Ulcerative Colitis (UC) and Familial Adenomatous Polyposis (FAP) is unique when compared to many other pediatric hospitals. Many children with UC or FAP may be candidates for a laparoscopic operation.
In traditional "open" surgery, the surgeon uses a single incision to enter into the abdomen. In laparoscopic surgery, the surgeon uses several small (3-5 millimeter) incisions through which surgical instruments are inserted and withdrawn. Each incision site is called a "port incision". At each port incision, a tubular instrument, called a trocar, is inserted into the abdomen. Specialized small instruments and a special tiny camera, called a laparoscope, are passed through the trocars during the operation.
At the beginning of the procedure, the abdomen is inflated (filled) with filtered air to provide a space for the surgeon to work. This space also helps the surgeon view the abdominal organs more easily. The laparoscope sends images (pictures) from the abdominal cavity to high-resolution video monitors in the operating room. During the operation the surgeon watches detailed images of the abdomen on the monitor. This system allows the surgeon to perform the same operation as traditional "open" surgery, but with smaller incisions.
We use these laparoscopic techniques to safely remove the entire colon and the lining of the rectum. This operation is performed using a combination of the incisions described above and a small version of the incision that babies are delivered through during C-section deliveries. Dissolvable stitches are used to close the incision sites.
Laparoscopic surgery is sometimes referred to as "minimally invasive surgery".
Each patient's clinical condition will determine whether an open or laparoscopic surgical procedure is recommended by the surgeon.
Patients who have a laparoscopic procedure may recover more quickly and return to normal activity in a shorter period of time.
Some benefits of laparoscopic surgery include: less post-operative pain, decreased length of hospital stay, smaller incisions, lower risk of cardiopulmonary complications, and reduced risk of small-bowel obstruction.
Patients who have had previous abdominal surgery may still be candidates for laparoscopic surgery.
Scars after laparoscopic surgery are significantly smaller than the scar left after a traditional "open" operation.
This procedure is generally done when a patient is on high dose corticosteroids, or the disease is unresponsive to medical management. Severe inflammation or ulceration of the rectum makes successful removal of the rectal lining more difficult.
Colectomy: remove entire colon (large bowel) but the rectum is left in place.
Ileostomy creation: a surgically created opening at the end of the small intestine (bowel) is brought through the skin of the abdominal wall to form a stoma or ostomy. This is a temporary (not permanent) ostomy needed until the J-pouch is created and has healed, which usually takes 6 to 9 months. The stoma empties partially digested food into a pouch that is worn on the abdomen (belly).
You will be shown how to take care of the stoma while you are in the hospital recovering from surgery. Information such as skin care, pouch emptying, and how to put on a pouch will be taught to you before you are discharged.
The nursing staff will arrange for a visiting nurse to come to your home to review teaching. Your supplies will be ordered for you from a home care supply company. Please refer to Ostomies: A Patient Guide to Ileostomies and Colostomies.
Most patients are discharged from the hospital within 5 to 7 days. After healing, regaining strength, and getting "weaned" off medications, the next stage operation will be scheduled usually within a few months. This time frame may vary depending on the healing of the lining of your rectum and reconditioning.
This operation may be done as a laparoscopic procedure or with an open surgical incision depending upon the condition of both you and your colon. Both procedures require general anesthesia in the operating room. The procedure usually takes 4 to 6 hours, depending on your condition.
Laparoscopic procedure: Four small incisions will be made on your abdomen. A telescope is passed into one of the incisions to observe the operation. Instruments are placed through the other three openings. At the end of the procedure, the openings are closed and covered with clear plastic bandage over gauze.
The illeoanal J-pouch or reservoir is created from the lowest part of the small intestine (bowel). Approximately 6 to 12 cm of the ileum (last part of the small intestine) will be used to create a J-shaped reservoir. The mucosa, or inner lining of the rectum, is separated from the muscular wall. The muscle wall of the rectum is left in place along with special sphincter muscles, which hold the stool inside the rectum or pouch. This part of the operation is done through the anus.
The surgeon then brings down the pouch and it is sewn to the anus. Once the ostomy is closed, the stool is able to travel through the entire small bowel without leaking from the anus.
A new temporary ileostomy is brought out onto the abdominal surface where the face one was. This allows the J-pouch and where it is sewn to the anus to heal properly.
In about six weeks, after healing and regaining your strength, you will be scheduled for an X-ray procedure to study the J-pouch. A catheter is placed into the anus to instill a small amount of contrast solution into the reservoir to make certain the areas have completely healed. You will then be taught how to begin fluid "challenges" once a day. You will be instructed to place a soft flexible catheter into the anus and reservoir and instill water once a day. You will be encouraged to hold the water for 15-30 minutes if possible, then sit on the toilet and empty it out. The amount of water will be increased every week to the let the reservoir slowly increase the amount it can hold. This will help decrease the amount of times you need to go to the bathroom once the ileostomy is surgically closed and stool is passing; through the anus. This will also improve your initial success at holding the stool and avoiding accidents. See for details.
Ileostomy is closed: This is called the "takedown" because the end of the ileum, which made the ileostomy stoma, is taken down from the abdomen wall and connected to the ileoanal reservoir. The old stoma site on the abdomen is now sutured closed. The intestinal output ("poop") can now flow directly into the internal pouch and be emptied out of the body through the anus.
The procedure usually takes 4 to 5 hours, depending on your condition. The operation is done through the same incisions as the previous surgery.
The ostomy site is closed with black sutures and then covered with gauze and tape. These sutures will be removed at your first follow-up visit (10-15 days after the surgery). It does not hurt to have the sutures removed.
It is not uncommon to have 8-12 watery-like stools per day in the first few weeks after surgery. You no longer have your colon for water absorption. It is important that you drink plenty of fluids to prevent dehydration. The natural enlargement of the reservoir, increased water absorption, and greater muscle control of your anus may take between 6 to 12 months to reach its potential.
You may even have occasional "accidents" in your underwear during this early time of adjustment. This is most common during the night when you are sleeping. Most people are able to sense whether they have to pass gas ("fart") or pass stools. This will get easier as you eat more regularly and you stools begin to thicken and have a pasty or semi-formed consistency. Once fully recovered, most people have between 4 to 6 bowel movements per day and can successfully pass gas without having an "accident". Some people may need to get up during the night, but most do not.
The procedure can be done in two operations if you have been on low dose corticosteroids, have been responsive to medical management and your rectal lining is intact with minimal inflammation. The two stage procedure is also done for people with FAP.
The two stage procedure combines the first and second stages of the three stage procedure into one longer operation (about 7 -8 hours). The second surgery is the "ostomy takedown" and it is the same surgery as the third stage of the three stage procedure.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”