Sean Ahrens was 12 when he was first diagnosed with Crohn’s disease, a condition that afflicts a person’s gut, causing diarrhea, fever, pain and cramps, bloody stool, as well as appetite and weight problems.
Unfortunately, there is no treatment or cure for Crohn’s disease. Patients can only seek temporary relief by taking medication long-term, or having surgery done.
During Ahrens’ struggle with the disease, he’s tried a myriad of treatment methods, ranging from prescribed drugs from his doctors and diets suggested by other patients with Crohn’s disease. Some of these worked better than others in keeping the symptoms of his disease in check, but none gave him permanent relief.
In 2010, Ahrens’ medication suddenly stopped working and his symptoms returned at full force. At the time, Ahrens was 23.
Desperate for relief from the months of diarrhea, pain, bleeding, and weight loss he was experiencing, he decided to take the plunge and try a treatment method only few Crohn’s patients had tried before: swallowing parasitic worm eggs.
Scientists currently speculate that Crohn’s disease is caused in part by an immune system that mistakenly attacks its own healthy cells. “If we actually give the body something to fight against, like a parasite,” Ahrens explained, “maybe it’ll stop fighting us and maybe it’ll start fighting the invader.”
In a previous study, 13 out of 30 subjects reported that ingesting parasitic eggs did help alleviate their Crohn’s symptoms, so Ahrens was willing to try.
He paid a pharmaceutical company in Germany $3,000 for 12 vials of pig whipworm eggs and on March 17, 2010, he downed these sample vials from a shot glass.
Over the next five months, Ahrens monitored his symptoms, taking another dose of the eggs every two weeks – and while tweaking with his diet and continuing his original medication.
By mid-August that year, Ahrens did feel better, but he couldn’t be certain which of his attempted treatment methods had brought about his improvement – or if it was a combination of all three strategies.
“The sad conclusion I have from the whole thing,” he admitted, “is I don’t have a clear conclusion.”
Although all of Ahrens’ experimentation and work was done at home – and often in the space of his old, worn apartment in Berkeley, California – he was later approached by Brennan Spiegel, a new co-editor of the American Journal of Gastroenterology.
Spiegel was impressed by Ahrens’ work and wanted the self-experimenter to write about and publish his findings in the renowned medical journal.
Ahrens’ work was published in July 2016.
The editor’s note of Ahrens’ published work recognizes that many traditional scientists and researchers may question “whether this work belongs in a medical journal or sends the wrong message to readers,” but it’s the unconventional work of “e-patients” like Ahrens who can help further the medical community by serving as advocates of their conditions and becoming equal partners with their doctors.
Ahrens still currently lives with Crohn’s disease, but he’s hopeful that his publishing experience will lead the medical community in a new, fresh direction. “The patient experience is research, and that research needs to be published.”
