What It’s Like to Get a Colectomy for Ulcerative Colitis

“I was very excited to have my life back.”

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For most people with ulcerative colitis—an inflammatory bowel disease in which the immune system repeatedly attacks the large intestine—surgery is not something they will ever have to truly consider. Thankfully, about half of people with the condition are in remission at any given year, according to the Crohn’s and Colitis Foundation. That means the treatments for ulcerative colitis (UC) have been effective and they are not experiencing symptoms.

But for a small percentage of people with UC, remission is difficult to reach, UC symptoms are severe and disrupt life, and complications of UC ensue. For this group, surgery may be the only effective option.

Chelsea Freeman is one of those people. She was diagnosed with sudden, severe UC that affected her entire colon (a type of UC known as “pancolitis”).

After trying every available treatment option, Freeman faced the reality of having a type of surgery called a colectomy, where part or all of the colon is removed. For her particular case, she had to have the entire colon removed. “It was really scary,” says Freeman. “I had never had surgery before.” The idea of having her entire large intestine removed was “crazy” and “wild.”

There are many types of surgery that treat ulcerative colitis, and the procedure that’s right for you will depend on your individual condition. Freeman’s surgery involved three main steps, according to Sergey Khaitov, MD, the surgeon at Mount Sinai Beth Israel who performed her operation:

Step 1. The large intestine is removed and a temporary ileostomy is created. An ileostomy is a surgically created hole in the abdomen that allows the small intestine to empty digested food into an external pouch, called an ileostomy bag (as opposed to passing through the large intestine and rectum as stool).

Step 2. The rectum is removed and a J-pouch is created from the small intestine. A J-pouch takes the end of the small intestine and joins it to the top of the anal canal, often forming the shape of a J.

Step 3. After the J-pouch has been given eight to 12 weeks to heal, the temporary ileostomy is reversed, the small intestine is connected to the J-pouch, and an ileostomy bag is no longer needed. “At that point, the patient will start moving his or her bowels through the anus and resume normal lifestyle,” says Dr. Khaitov.

It’s a major operation, but for those who require it, it’s life-changing. “Having the ileostomy isn’t easy, but the one thing that gave me hope was that I could feel like I could go out in the world,” says Freeman. “I could go to class, and I could hang out with my friends, and I could live again.”

The steps of the surgery sound incredibly complex—and they are—but thanks to new advances, the surgery is less of a burden to the patient than ever before. “Within several days after the surgery, Chelsea felt better,” recalls Dr. Khaitov. “And the surgery was done with minimally invasive technique, which allowed her to recover faster.”

“Having a life again was everything, and I felt like I didn’t have one when I had UC,” says Freeman. “It was really scary, but at the same time, I was very excited to have my life back.”