Key takeaways

  • Surgery for ulcerative colitis (UC) is considered when medication and diet changes are ineffective, with about 9.2% of patients eventually undergoing colectomy. Common surgeries include proctocolectomy, ileostomy, and ileal pouch-anal anastomosis (IPAA).
  • After surgery, you may need an ileostomy or an ileoanal pouch to manage waste. Recovery and adaptation to life post-surgery require medical support and patient education.
  • Surgery can significantly improve quality of life and eliminate symptoms for many patients. Long-term follow-up is essential to monitor for potential complications. It’s important to discuss all the options fully with your doctor to decide if this option is right for you.

Surgery is one of the many treatment options available for people with ulcerative colitis (UC). However, not everyone with this condition will need surgery.

You may be able to manage UC through medication and changes to your diet. Over time, the initial treatments your doctor prescribed may no longer work, or they may become less effective.

In a 2018 study of Swiss people with UC, researchers found that 9.2% of the study participants eventually underwent colectomy (colon removal). They also found that:

  • 5 years after diagnosis, 4.1 percent of people had received a colectomy
  • 10 years after diagnosis, 6.4 percent of people had received a colectomy
  • 15 years after diagnosis, 10.4 percent of people had received a colectomy
  • 20 years after diagnosis, 14.4 percent of people had received a colectomy

Most people had their colectomies performed within 10 years of being diagnosed. Surgery rates for people who’d lived with UC for at least 15 years were significantly lower than rates for people who’d been diagnosed more recently.

After having UC surgery, your doctor will need to create a way for your body to eliminate waste.

A procedure known as an ileostomy can help. In an ileostomy, your ileum (the final section of the small intestine) is connected to your abdominal wall.

You’ll need a stoma as part of the procedure. A stoma is a surgically created opening that allows waste from your intestines to exit your body. A stoma is typically made in the lower abdomen, just below the waist.

Proctocolectomy is the most common type of UC surgery.

A proctocolectomy is performed in the hospital as an inpatient operation. This means you’ll stay in the hospital during the procedure and for part of your recovery. You’ll need to receive general anesthesia.

After you have a proctocolectomy, you’ll also need an ileostomy or an ileal pouch-anal anastomosis (IPAA) to help you eliminate waste.

In most cases, your doctor will conduct both procedures on the same day so you don’t have to have general anesthesia again.

In a total proctocolectomy, the anus is also removed.

Ileal pouch-anal anastomosis (IPAA) is sometimes called a J-pouch surgery. In this procedure, the ileum is converted into a pouch shaped like the letter “J.” The pouch is then connected to your anal canal.

IPAA is usually effective, but it hasn’t been around as long as ileostomy has. This means it may be more difficult to find a surgeon who can perform the procedure.

This procedure is typically performed in two or three stages over the course of 2 or 3 months. You may receive a temporary ileostomy while your pouch heals.

What to expect

As with the ileostomy, you’ll need a proctocolectomy before an IPAA. An IPAA is performed in a hospital, and you’ll receive general anesthesia.

The IPAA won’t function like a normal bowel and rectum at first. You may have bowel leakage for several weeks while you learn to control the internal pouch. Medications may help control the function of the pouch.

If you’re planning to give birth to children in the future, talk with your doctor about this before the procedure. This procedure may lead to infertility in some people.

Another type of ileostomy is continent ileostomy or K-pouch surgery. The K-pouch is also known as a Kock pouch, hence its name.

During this procedure, the end of your ileum is secured against the inside of your abdomen.

Unlike a traditional ileostomy, you don’t need to wear an ostomy bag. A K-pouch is also different from a J-pouch in that the ileum isn’t connected with the anus. Instead, a continent ileostomy relies on an internal human-made valve that collects waste and prevents the waste from draining out.

When the K-pouch gets full, waste is removed via a catheter. You’ll need to use a stoma cover and drain the pouch often, at least a few times per day.

DID YOU KNOW?

Other types of ulcerative colitis (UC) surgeries include the S-pouch surgery and the W-pouch surgery. However, they aren’t as effective or commonly performed.

After your UC surgery, you’ll stay in the hospital for 3 to 7 days. This window of time allows your surgeon to monitor you for signs of complications.

Both ileostomies and pouch surgeries will require a 4- to 6-week recovery period.

During this time, you’ll meet regularly with your surgeon, doctor, and possibly an enterostomal therapist.

An enterostomal therapist is a specialized therapist who works directly with people who’ve had their colon removed.

Your care team will likely cover the following points with you to help improve your recovery:

  • Eat well: Good nutrition can help your body heal and help you avoid post-operation health issues. Nutrition absorption can be an issue after these surgeries, so eating well will help you maintain healthy levels of nutrients.
  • Hydrate: Hydration is important for your overall health but especially for your digestive health. Drink six to eight glasses per day at a minimum.
  • Stay active: Work with a rehab therapist or a physical therapist to slowly recover your physical capabilities, and exercise when you can. Staying active is a great way to care for your overall health as you recover, but too much activity too soon could complicate your recovery.
  • Manage stress: Anxiety or emotional stress can cause stomach issues, which can increase your risk of an accident.

Surgery is usually a last-resort option for UC, partly due to the fact that any surgery can pose risks and complications. Some of the risks of UC surgery include:

  • bleeding
  • infection
  • scarring
  • itching or irritation of the stoma
  • organ damage
  • blocked intestines from scar tissue buildup
  • diarrhea
  • excessive gas
  • rectal discharge
  • nutritional deficiencies, especially vitamin B12
  • electrolyte imbalances

Bowel surgery may also increase your risk of developing phantom rectum. A phantom rectum refers to the feeling of having to pass a bowel movement even though you no longer have a rectum. This can occur for several years postsurgery.

Meditation, antidepressants, and over-the-counter (OTC) pain relievers may help with phantom rectum.

If you’re considering surgery as a UC treatment, talk with your doctor about your options and the risks.

Write down a list of questions before the appointment. Bring along a spouse, family member, or friend to help you remember answers and ask questions.

Questions to ask your doctor

  • Am I a candidate for surgery?
  • How will this surgery affect my UC symptoms?
  • What are the risks of this surgery?
  • What are the possible short- and long-term complications?
  • Which type of surgery is best for me?
  • Have you worked with a surgeon who has performed this procedure before?
  • What will recovery be like?
  • Will I need to make any lifestyle changes?
  • How will this surgery affect my day-to-day life?

You may still live with many of the side effects of these surgeries long after the incisions have healed, though. That’s why it’s important that you feel prepared and informed about your options before going into the hospital.