Surgery wasn’t easy, but Chelsea Freeman thinks it was worth it.
Ulcerative colitis (UC) is not typically considered a condition that can be cured. It’s a chronic, inflammatory condition in which the immune system attacks the large intestine. That said, a colectomy—the removal of the large intestine—essentially “cures” UC symptoms like frequent, bloody diarrhea and abdominal pain.
However, patients have to weight the risks and benefits of a colectomy. It’s a tough decision, and the side effects and recovery can be unpleasant. For people with mild symptoms, it’s easier to make lifestyle tweaks and stick to a treatment regimen. However, for people with severe ulcerative colitis—such as Chelsea Freeman—the inflammation may be so serious that surgery is the only option.
Freeman was diagnosed with a rapid-onset, aggressive form of UC that affected her entire colon. She tried almost every possible type of treatment for UC, but all of them failed to bring relief or triggered unpleasant side effects. Learn more about her experience with UC treatments here.
She decided the colectomy was her best option after consulting with her surgeon, Sergey Khaitov, MD, who specializes in colon and rectal surgery at Mount Sinai Beth Israel.
“It is a very difficult decision to proceed with surgery [for a] young person,” says Dr. Khaitov. “It may change the body image perception, [and] it will require certain dietary modifications when you have an ileostomy.”
Freeman describes her colectomy as “grueling” and much more difficult than she anticipated. Her colectomy was completed in multiple steps, and each one brought its own set of challenges for Freeman.
“Post-op was hard. I lost a lot of weight. I had to be counseled by ostomy nurses, and I had never even heard of an ostomy before, and I didn’t realize how complicated it was to take care of,” says Freeman.
The ileostomy is a hole made in the abdomen during the colectomy. Because the large intestine is removed, it can no longer be used to pass stool through the rectum. Instead, the small intestine passes waste through the ileostomy and into an external pouch (called an ileostomy bag). The bag must be emptied several times a day, and the entire apparatus must be changed every four to five days, according to Dr. Khaitov.
“I took baby steps, and I got … used to the fact that I was just going to have intestines sewed to the outside of my body, which still sounds insane,” says Freeman.
The ileostomy bag is temporary: Eventually, another surgery connects the small intestine to the rectum, and the individual can resume having control of bowel movements. “It’s a little bit hard in the beginning, but the vast majority of patients, especially young patients, will do beautifully,” says Dr. Khaitov.
Sure enough, after recovery, Freeman is enjoying a life free of UC symptoms. “I’m so excited for my future and I’m so grateful that I had those surgeries done.”
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When I decided to have the J-Pouch,
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I didn't know it was gonna be
as difficult and as grueling.
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Saying at the age of 23 that I've already
had three abdominal surgeries is a lot,
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I think, for a young person.
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It is very difficult decision to
proceed with surgery in young person who
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will be facing creation of the ileostomy.
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It may change the body image perception.
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It will require certain dietary
modifications when you have an ileostomy.
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Post-op, it was hard,
I lost a lot of weight,
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I had to be counseled by ileostomy nurses.
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And I'd never even heard
of an ostomy before,
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and I didn't realize how
complicated it was to take care of.
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Ileostomy is a external
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bag where the small intestines will
open up on the patient's skin.
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They will drain stool, and
the stool will be contained by a special
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appliance and bag,
which will collect the stool.
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The patient will empty the bag
several times a day and
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change the entire apparatus every four or
five days on average.
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Well, I took baby steps, and I got
better with being used to the fact that I
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was just gonna have intestines
sewed to the outside of my body,
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which still sounds insane.
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Believe it or not, they deal with this
very, very well because they feel better.
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They don't have severe diarrhea
with blood, they stop having pain.
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Then they prepare themselves for
the second step of surgery
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when we actually remove the rectum and
create an internal J-pouch,
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made out of the patient's small
intestines, and connect it to the anus.
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So after the second surgery,
I felt like I had so many just drains and
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tubes, it just made me feel
even more sick and confined.
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It was uncomfortable, I had a catheter,
which I felt too young for that.
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I had my new ostomy that was different,
I also had a rectal tube,
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which was by far the most
painful thing I've ever had.
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The third surgery, which will
be the reversal of the ileostomy,
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is the smallest out of those three steps.
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And that is the time when
the patient will start moving his or
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her bowels through the anus
after the surgery.
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I couldn't eat food,
I couldn't drink either.
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Every once in a while I could
maybe nibble on an ice chip,
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that's how obstructed everything
was from the inflammation.
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It's a little bit difficult
to handle in the beginning, but
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vast majority of patients, especially
young patients, will do beautifully.
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I'm so excited for
my future, and I'm so
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grateful that I had those surgeries done.
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Surgery for Crohn’s disease & ulcerative colitis. New York, NY: Crohn’s & Colitis Foundation. (Accessed on January 22, 2019 at http://www.crohnscolitisfoundation.org/resources/surgery-for-crohns-uc.html.)