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Patient Instructions

Total proctocolectomy with ileostomy is surgery to remove all of the colon (part of the large intestine), rectum, and anus.

You will receive general anesthesia right before your surgery. This will make you unconscious and unable to feel pain.

For your proctocolectomy:

• Your surgeon will make an incision (cut) about 6 inches long in your lower belly.
• Then your surgeon will remove your large intestine and rectum.
• Your surgeon may also look at your lymph nodes and may remove some of them, if needed.

Next your surgeon will create an ileostomy:

• Your surgeon will make a small incision in your belly. Usually this incision is made in the lower right part of your belly.
• The end of your ileum (the last part of your small intestine) will be brought through this small incision. Your surgeon will sew your ileum onto your belly.
• This opening in your belly formed by your ileum is called the stoma. Stool will come out of the stoma and collect in a drainage bag that will be attached to you.

Total proctocolectomy with ileostomy surgery is done when other medical treatment does not help problems with your large intestine.

Many different problems may lead to the need for this surgery. Some of these are:

• Inflammatory bowel disease (ulcerative colitis or Crohn's disease) is the most common.
• Colon or rectum cancer
• A condition called familial polyposis
• Birth defects that have damaged your intestines
• Accident or injury that has damaged your intestines

Total proctocolectomy with ileostomy is usually safe. Your risk will depend on your general overall health. Ask your doctor about these possible complications:

Risks for any surgery are:

• Wound infections
• Blood clots in the legs that may travel to the lungs
• Breathing problems
• Heart attack or stroke

Risks for this surgery are:

• Bleeding inside your belly
• Damage to nearby organs in the body and to the nerves in the pelvis
• Infection, including in the lungs, urinary tract, and belly
• Scar tissue may form in your belly and causes blockage of your intestines.
• Your wound may break open.
• Poor healing of your wound in your perineum (where the rectum was removed)
• Poor absorption of nutrients from food because of your ileostomy
• Phantom rectum, a sensation that your rectum is still there (similar to people who have amputation of a limb)

Always tell your doctor or nurse what drugs you are taking, even drugs, supplements, or herbs you bought without a prescription.

Talk with your doctor or nurse about these things before you have surgery:

• Intimacy and sexuality
• Sports
• Work
• Pregnancy

During the 2 weeks before your surgery:

• Two weeks before surgery you may be asked to stop taking drugs that make it harder for your blood to clot. These include aspirin, ibuprofen (Advil, Motrin), clopidogrel (Plavix), Naprosyn (Aleve, Naproxen), and others.
• Ask your doctor which drugs you should still take on the day of your surgery.
• If you smoke, try to stop. Ask your doctor for help.
• Always let your doctor know about any cold, flu, fever, herpes breakout, or other illnesses you may have before your surgery.
• Eat high fiber foods and drink 6 to 8 glasses of water every day.

The day before your surgery:

• Eat a light breakfast and lunch.
• You may be asked to drink only clear liquids, such as broth, clear juice, and water, after noontime.
• Do NOT drink anything after midnight, including water. Sometimes you will not be able to drink anything for up to 12 hours before surgery.
• Your doctor or nurse may ask you to use enemas or laxatives to clear out your intestines. They will give you instructions for this.

On the day of your surgery:

• Take your drugs your doctor told you to take with a small sip of water.
• Your doctor or nurse will tell you when to arrive at the hospital.

You will be in the hospital for 3 to 7 days. You may have to stay longer if you had this surgery because of an emergency.

You may be given ice chips to ease your thirst on the same day as your surgery. By the next day, you will probably be allowed to drink clear liquids. Your doctor or nurse will slowly add thicker fluids and then soft foods as your bowels begin to work again. You may be eating a soft diet 2 days after your surgery.

While you are in the hospital, your nurse and doctor will teach you how to care for your ileostomy.

You will have an ileostomy pouch that is fitted for you. Drainage into your pouch will be constant. You will need to wear the pouch at all times.

Most people who have total proctocolectomy with ileostomy are able to do most activities they were doing before their surgery. This includes most sports, travel, gardening, hiking, and other outdoor activities, and most types of work.

If you have a chronic condition, such as Crohn's disease or ulcerative colitis, you may need ongoing medical treatment.

Cima RR, Pemberton JH. Ileostomy, colostomy, and pouches. In: Feldman M, Friedman LS, Sleisenger MH, eds. Sleisenger & Fordtran’s Gastrointestinal and Liver Disease. 8th ed. Philadelphia, Pa: Saunders Elsevier; 2006:chap 110.

Fry RD, Mahmoud N, Maron DJ, Ross HM, Rombeau J. Colon and rectum. In: Townsend CM, Beauchamp RD, Evers BM, Mattox KL, eds. Sabiston Textbook of Surgery. 18th ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap 50.

Khatri VP, Asensio JA, eds. Subtotal colectomy/panproctocolectomy and j-pouch reconstruction. Operative Surgery Manual. 1st Ed. Philadelphia, Pa: Saunders; 2003:chap 35.

Scriver G, Hyman N. Ileostomy construction. Operative Techniques in General Surgery. 2007;9(1): 43-49.

Updated by: Robert A. Cowles, MD, Assistant Professor of Surgery, Columbia University College of Physicians and Surgeons, New York, NY. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.