“I was very excited to have my life back.”
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.”
00:00:00,000 --> 00:00:04,337
00:00:04,337 --> 00:00:08,489
So basically, when I sat down with
the doctor in the emergency room,
00:00:08,489 --> 00:00:13,071
they explained to me, that since I had run
through every treatment on the market,
00:00:13,071 --> 00:00:17,008
I could either try clinical trials,
or I could have an elective,
00:00:17,008 --> 00:00:22,414
total colectomy, total removal of my
colon, and then, I would get an ileostomy.
00:00:22,414 --> 00:00:31,018
00:00:31,018 --> 00:00:35,775
When Chelsea first came to see me,
she had severe ulcerative colitis,
00:00:35,775 --> 00:00:39,660
which was deeply affecting
her quality of life.
00:00:39,660 --> 00:00:43,430
She required multiple medical treatments,
00:00:43,430 --> 00:00:45,370
did not work well enough.
00:00:45,370 --> 00:00:48,390
And after a very extensive
discussion with her,
00:00:48,390 --> 00:00:51,690
we took decision to
proceed with an operation.
00:00:51,690 --> 00:00:55,830
But when I was actually faced with
that decision, it was really big, and
00:00:55,830 --> 00:00:57,120
it was really scary.
00:00:57,120 --> 00:01:01,790
Having a life again was everything, and I
felt like I didn't have one when I had UC.
00:01:01,790 --> 00:01:06,290
In surgical management of ulcerative
colitis, there are three steps.
00:01:06,290 --> 00:01:12,350
The first step in a patient who is sick
and has severe ulcerative colitis, will
00:01:12,350 --> 00:01:17,430
involve removal of the large intestines
and creation of the temporary ileostomy.
00:01:17,430 --> 00:01:21,230
Then, this patient will
undergo second step surgery.
00:01:21,230 --> 00:01:25,790
When we actually remove the rectum and
create an internal J-pouch,
00:01:25,790 --> 00:01:30,690
made out of the patient's small
intestines, and connect it to the anus.
00:01:30,690 --> 00:01:34,060
Still, the patient will have
an ileostomy at that time.
00:01:34,060 --> 00:01:38,770
Then, once everything is healed, that
will lead the patient to the third stage,
00:01:38,770 --> 00:01:40,920
when we reverse the ileostomy.
00:01:40,920 --> 00:01:43,980
At that point,
the patient will start moving his or
00:01:43,980 --> 00:01:48,870
her bowels through the anus,
and resume normal lifestyle.
00:01:48,870 --> 00:01:53,630
Having the ileostomy isn't easy,
but the one thing that gave me hope,
00:01:53,630 --> 00:01:58,310
was that I feel like I could go out in
the world, I could go to class, and
00:01:58,310 --> 00:02:01,890
I could hang out with my friends,
and I could like, live again.
00:02:01,890 --> 00:02:06,470
Within several days of the surgery,
Chelsea felt better.
00:02:06,470 --> 00:02:09,150
And the surgery was done with
minimally invasive technique,
00:02:09,150 --> 00:02:11,520
which allowed her to recover faster.
00:02:11,520 --> 00:02:14,150
It was really scary,
but at the same time,
00:02:14,150 --> 00:02:16,572
I was very excited to have my life back.
00:02:16,572 --> 00:02:21,672
Ileostomy facts. United Ostomy Associations of America, Inc. (Accessed on January 14, 2019 at https://www.ostomy.org/ileostomy/.)
J-pouch procedure. New York, NY: Crohn’s and Colitis Foundation. (Accessed on January 14, 2019 at http://www.crohnscolitisfoundation.org/resources/j-pouch-surgery.html.)
Surgery for Crohn’s disease & ulcerative colitis. New York, NY: Crohn’s and Colitis Foundation. (Accessed on January 14, 2019 at http://www.crohnscolitisfoundation.org/resources/surgery-for-crohns-uc.html.)