What Happens When Ulcerative Colitis Medications Don’t Work?
After trying every option, here’s what one woman chose to do.
Treatment for ulcerative colitis (UC) has improved greatly over time, and many people are able to reach and maintain remission. Unfortunately, for a small percentage of people with UC, the available treatments are unable to bring relief.
Chelsea Freeman was one of those people. Her UC began aggressively, and she was quickly diagnosed with pancolitis—meaning the inflammation affects the entire length of the large intestine. Learn more about how Chelsea learned her diagnosis here.
For a year after the diagnosis, she tried every available medication, but saw no improvements. At that point, many doctors will try steroids. This medication “will help get [the condition] under control often very rapidly, but it has a lot of long-term side effects,” according to Todd B. Linden, MD, gastroenterologist.
Freeman’s experience with steroids for UC was a mixed bag: “While they save your life—because they do—they suppress your immune system. They have so many side effects with them that are just grueling.” She experienced breakouts and fat deposits on her face, and the effect was so severe that her friends didn’t recognize her.
She moved on to other treatments for severe UC: biologics, infusions, and “every single drug on the market.” None worked for her.
Freeman’s doctors explained the situation to her: She could try clinical trials, or she could have a colectomy (a complete removal of the colon).
“When Chelsea first came to see me, she had severe ulcerative colitis, which was deeply affecting her quality of life,” says Sergey Khaitov, MD, a surgeon specializing in colon and rectal surgery at Mount Sinai Beth Israel. “After very extensive discussion with her, we [made the] decision to proceed with an operation.”
Freeman describes the decision as “really big and really scary.” The fact that an entire organ could be safely removed from her body was a “wild” thought. But ultimately, that’s what she decided to do.
Although surgery is a serious option, it effectively “cures” ulcerative colitis, since there is no colon left for the immune system to attack.
Want to learn more about ulcerative colitis?
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A lot of people do find relief,
sometimes in the first,
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second therapy that they try, but
that's not what happened for me.
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I had an aggressive onset and within
three months, I saw a GI specialist.
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A week later, I had a colonoscopy and
that day, I was diagnosed with pan
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ulcerative colitis which means
ulcers throughout the entire colon.
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Once I was diagnosed,
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I was started on two less aggressive
pill therapies which both failed.
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I had no symptomatic relief from them.
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Sometimes we'll use steroids and
that will help get it under control
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often very rapidly, but
it has a lot of long term side effects.
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While they save your life, because they
do, they suppress your immune system.
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They have so many side effects
with them that are just grueling.
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You get fat deposits in your face, and
people who I knew didn't recognize me
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anymore if I hadn't seen them for
a period of time.
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And it was very upsetting.
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I started to move onto biologics,
infusion, drugs, a few other pill drugs.
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I basically tried every
single drug on the market.
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Within that year I took off from
school and none of them worked.
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Sometimes we say, the best thing to do
is just to take the colon out completely
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and be done with all this.
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So basically when I sat down with
the doctor in the emergency room,
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they explained to me that since I had run
through every treatment on the market.
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The steroids that were supposed to be my
saving grace were no longer working and
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that I didn't have an infection.
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I could either try clinical trials or
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I could have an elective total colectomy,
or the total removal of my colon.
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And then I would get an ileostomy
which is something I had heard of.
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When Chelsea first came to see me,
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she had severe ulcerative colitis which
was deeply affecting her quality of life.
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She required multiple medical
treatments which, unfortunately,
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did not work well enough.
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And after very extensive
discussion with her,
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we took decision to
proceed with an operation.
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But when I was actually faced with
that decision, it was really big and
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it was really scary.
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I had never had surgery before and
especially something as crazy as
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someone to tell you we can just take
out your entire large bowel is wild.
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Surgery for Crohn’s disease and ulcerative colitis. New York, NY: Crohn’s and Colitis Foundation. (Accessed on January 7, 2018 at http://www.crohnscolitisfoundation.org/resources/surgery-for-crohns-uc.html.)
Ulcerative colitis. Bethesda, MD: National Institute of Diabetes and Digestive and Kidney Diseases. (Accessed on January 7, 2018 at https://www.niddk.nih.gov/health-information/digestive-diseases/ulcerative-colitis.)