‘I want my life back:’ Trial offers new hope for severe Crohn’s disease

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‘I want my life back’: Trial offers new hope for severe Crohn’s disease

Woman travels to Seattle from Norway for novel treatment to reboot a badly damaged immune system

Oct. 9, 2014
Elise Elholm

Elise Elholm came to the U.S. from Norway to be part of a trial to see whether a bone marrow transplant could reverse Crohn's disease, a disease where the body's immune system attacks the healthy parts of its own digestive system.

Bo Jungmayer / Fred Hutch News Service

A cutting-edge clinical trial in Seattle is giving new hope to a woman from Norway with Crohn’s disease so severe it nearly ruined her life.  

Elise Elholm, 45, has grappled with the inflammatory bowel disorder for 27 years, enduring multiple surgeries, failed bouts of drug treatment and ongoing pain and fatigue that left her virtually unable to function at work or home.

Last May, after two years of research, she traveled 4,550 miles from her home outside Oslo to become the second patient at the Fred Hutchinson Cancer Research Center to test whether bone marrow from a stranger can reboot a faulty immune system -- and reverse the worst effects of the ravaging disease. 

“I want my life back,” she wrote in an explanation of her decision. “It is time to wipe out this disease from my body before it does more irreversible damage to me.”

In a blog and through tweets aimed at fellow Crohn’s sufferers, Elholm has chronicled her progress before and after an allogeneic hematopoietic cell transplant in June.

“I wanted people to know there’s something that can fix this,” she said.

Now, months later, it appears that the Crohn’s Allogeneic Transplant Study, or CATS, a three-year effort led by Dr. George McDonald and Dr. George Georges of Fred Hutch’s Clinical Research Division may have worked.

“The first two patients have done very well,” Georges said.

In fact, Elholm’s progress has been exceptional, Georges said, making her a virtual poster child for the procedure that aims to reverse Crohn’s, a disease in which the body’s immune response attacks healthy parts of its own digestive system.

About 1.4 million people in the U.S. and 5 million around the world live with Crohn’s disease or ulcerative colitis, which are inflammatory bowel diseases, according to the Crohn’s & Colitis Foundation of America. Only a small fraction, however, have the kind of treatment-resistant disease that Elholm has experienced.

The CATS trial was considered a last resort for her refractory Crohn’s disease, which left her gut riddled with ulcers and strictures. Surgery had reduced her intestines to less than a quarter of normal length, posing the possibility that she’d develop a condition called short bowel syndrome and require intravenous nourishment for the rest of her life.

In November 2013, her doctors in Norway concluded that all conventional medicine had failed. She was out of effective options.

Elholm and her husband, who both have a background in science, had spent two years studying the science of Crohn’s when they learned about the CATS trial, which was launched with the help of funding from the Broad Medical Research Program.

Their decision to come to Seattle was based on three findings, Elholm said. In all known cases from the U.S., the United Kingdom, Germany, Japan and China, allogenic transplants have completely cured Crohn’s.

Risks from the transplant, including graft-vs.-host disease, have been reduced because of progress in technique, she said. Fred Hutch appeared to be the most experienced center, with the best protocol.

Even though they were so far from Seattle, the couple decided to try what they perceived to be the best option -- and the best clinic.

Elholm’s condition was so bad, she easily qualified for the CATS trial. In late spring, the pair arrived in Seattle with their 6 ½-year-old daughter. Older siblings ages 14 and 16 stayed with friends and family back home.

Elise Elholm

Elise Elholm received a transplant on June 27 and has been improving ever since.

Courtesy Elise Elholm

She was transplanted on June 27, receiving stem cells from a 26-year-old man, and has been improving steadily ever since. “Day 12: ENGRAFTMENT!!!” she tweeted from her account @crohnstransplant.

The Hutch scientists say it’s too soon to say her Crohn’s is gone for good. As of last year, they’d heard from more than 550 patients with severe Crohn’s and were reviewing files to see who qualifies for the Phase 2 trial.

But the trial admits only people like Elholm, who have failed all other treatment options and face the prospect of continued misery. Bone marrow transplants carry risks, including a 10 percent chance of death, so patients must carefully weigh their options. Elholm said she understood the decision.

“Yes, there is a risk of dying from this,” she wrote online. “But this is acceptable when no other treatment is offered that can give me acceptable quality of life.”

Outside experts agree that the treatment may be helpful for some Crohn’s patients. It will take more investigation to determine how widely it can be used, said Dr. James Lewis, associate director for the Inflammatory Bowel Program at the University of Pennsylvania Health System and an expert with the Crohn’s & Colitis Foundation of America.

“There are likely subsets of the population with Crohn’s disease who will experience substantial benefit from bone marrow transplantation,” Lewis said in an email. “The challenges going forward are to determine if this therapy is as good or better than our standard therapies and, if so, in which subgroups of patients this should be used.”

Learning about the short- and long-term risks of the therapy will be crucial, he added.

So far, it has been worth it, said Elholm, who believes she’s cured, judging from previous reports from patients around the world. In a blog post on Sept. 19, she posted the results of her latest endoscopy/colonoscopy: “No signs of Crohn’s. Stricture is gone. Ulcers have healed.”

For the first time in years, Elholm says she actually feels good, with enough energy, to return to her job as a clinical researcher for a pharmaceutical firm and to be the kind of mother she wants to be. The family has just returned to Norway, where Elholm said she can’t wait to get back to regular life.

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JoNel Aleccia is a staff writer at Fred Hutchinson Cancer Research Center. From 2008 to 2014, she was a national health reporter for NBC News and msnbc.com. Prior to that she was a reporter, editor and columnist for more than two decades at newspapers in the Northwest. Reach her at jaleccia@fredhutch.org

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