What is a total proctocolectomy with ileostomy?

A total proctocolectomy is surgical removal of the colon, rectum, and anus. Your surgeon will perform it while you’re under general anesthesia. Surgeons typically perform this surgery for people who have inflammatory diseases of the colon that haven’t responded to medical treatment or who have damage from inflammation that has negatively affected these structures.

After a proctocolectomy, your body still needs a way to eliminate waste. Your surgeon provides this by performing an ileostomy. This involves pulling part of your small intestine through an opening in your lower abdomen. The small intestine eliminates waste into a disposable bag worn over the surgical wound opening, or stoma.

A proctocolectomy is a last resort for people with inflammatory bowel disease (IBD), such as ulcerative colitis or Crohn’s disease. Surgeons usually try approaches that will save the rectum and anus before resorting to a total proctocolectomy.

This procedure may also be required to treat certain birth defects or to eliminate certain types of colon or rectal cancer. Doctors may also perform this surgery on an emergency basis if the colon or rectum is injured beyond repair.

Unless you need this surgery on an emergency basis, your doctors will schedule it several weeks in advance to give you time to prepare. During the weeks before surgery, you should eat a high-fiber diet. You’ll also need to drink six to eight glasses of water per day. This ensures that you’re hydrated and helps your intestines function as well as they can.

Your doctor will ask you to restrict your diet to clear liquids in the 24 hours before the surgery. During this time you can have:

  • broth
  • clear gelatin dessert
  • tea
  • some fruit juices

You shouldn’t eat or drink anything after midnight on the day of the procedure.

Your surgeon may also ask you to clean your bowels before surgery. This cleansing process is called “bowel prep.” Your surgeon will prescribe laxatives or a series of enemas for you to take the night before your procedure. This will cause you to experience diarrhea and mild cramping that lasts for a few hours.

Your doctor will perform a total proctocolectomy with ileostomy in the hospital. Your surgeon will ask you to arrive a few hours before your scheduled surgery time. After you’ve checked in, you’ll exchange the clothing you’re wearing for a hospital gown. A healthcare provider will place intravenous (IV) access in your arm so that the surgery team can give you fluids and medications, and draw blood. Your blood test results will help your doctor determine if you’re healthy enough for surgery.

When it’s time for your surgery, your surgical team will bring you into the operating room on a wheeled bed called a gurney. An anesthesiologist will inject a medication into your IV that will put you into a deep sleep. This will keep you from feeling any pain during the surgery. While you’re unconscious, your anesthesiologist will monitor your vital signs.

Your surgeon may perform this surgery in one of two ways. Most surgeons prefer to use a laparoscope, or a tiny camera that they insert through small incisions in your abdomen. They then use tiny tools to perform the surgery. When it’s over, you’ll have several small incisions in your abdomen as opposed to one long incision.

If your surgeon can’t do the procedure laparoscopically, they’ll make a large incision in your abdomen. They’ll remove your colon, or large intestine, as well as your rectum and anus through this incision. If they suspect cancer is present, they may also take samples of tissue from nearby lymph nodes. They’ll then send the samples to a pathology lab for analysis.

An ileostomy requires making a small incision on the lower part of your abdomen. Your surgeon gently draws the lowest part of the small intestine, called the ileum, through the cut and sews it in place on your abdomen. This creates a stoma, or opening, for you to eliminate stool into a disposable bag.

As with any major surgery, this surgery increases your risk of:

  • an allergic reaction to the general anesthetic
  • heavy bleeding
  • damage to nearby organs
  • infection

A few risks are specific to this procedure, but they’re rare. They include:

  • scar tissue, or adhesions, that block the intestines
  • an inability to properly absorb nutrients
  • itching, irritation, or infection around the stoma

You’ll be in the hospital for at least 72 hours, and possibly as long as a week, longer if complications occur. Your length of hospital stay depends on whether you had a laparoscopic procedure or an open procedure, how quickly your bowels start moving again, and how quickly your surgical wounds heal.

You’ll be on a clear liquid diet at first because your body will have to adjust to the structural changes after surgery. If all goes well, you’ll probably be able to start eating soft foods after about 48 hours.

During your stay in the hospital, an educator will visit you several times to teach you how to clean and maintain your stoma.

Healing times vary. On average, they can take six to eight weeks or longer if other medical issues occur due to the surgery or if your health was poor before the surgery. Once the surgical wounds heal and you’re confident in your ability to handle your ileostomy, you’ll probably be able to participate in all the activities you enjoyed before surgery. Your ileostomy bag is small and easily hidden by clothes. No one will be able to tell that you’re wearing it.

Although your quality of life is likely to improve after surgery, you’ll still need routine follow-up care if you have IBD. If you receive a diagnosis of cancer, your doctor may recommend chemotherapy or radiation.