Christchurch woman says drug and determination cured her Crohn's
Kimberley Coleman weighed 38kg, could not walk and was about to have her bowel removed.
She had been diagnosed with Crohn's disease a year earlier, but her condition deteriorated rapidly.
That was in 1998, when Coleman was 16.
Now aged 35, Coleman has lived Crohn's free for nine years, with no sign she ever had the disease.
"It started off with tummy pains and cramping and it started getting rapidly worse with diarrhoea, blood, vomiting.
"All of a sudden I started losing weight rapidly. I went from a pretty healthy 55kg down to 40kg over three or four months. I went from being really sporty and healthy, I played waterpolo and did ski racing, to not being able to move or walk," Coleman said.
She was in and out of hospital during her last years at Christchurch Girls' High School. She tried everything from steroids to a liquid diet in the hope of easing her symptoms.
"I was told I would never have children and that I would probably never marry because Crohn's is such a socially awkward disease where the bathroom becomes your best friend."
When Coleman was about to have a permanent colostomy, she was put in touch with Australian doctor Thomas Borody, who is a gut health specialist.
Coleman said Kiwi doctors told her the drugs Borody recommended were available in New Zealand, but were expensive and had severe side effects. She decided to try them anyway.
Borody said the medical community ridiculed him because he treated Crohn's as infectious – the culprit being a bacteria called Mycobacterium avium subspecies paratuberculosis (MAP).
He developed a drug that targeted the bacteria, using the antibiotics clarithromycin, rifabutin and clofazimine.
"Physicians ... openly criticised the idea," Borody said.
Coleman took Borody's drug from 1998 to 2007, along with other treatments including iron transfusions.
She credits the drug and her own determination with curing her.
Study organisers expect about 20 places for New Zealanders in the study. So far, 38 Kiwi patients have been pre-screened and four are enrolled.
Crohn's affects more than 20,000 Kiwis.
Paediatric gastroenterologist Andrew Day said the role of MAP in Crohn's disease development was still unclear.
"There is some evidence, but not convincing proof, of a role in Crohn's disease. Part of the difficulty is that there are not yet studies that show the presence of MAP in active Crohn's disease... Data has been very circumstantial so far. My impression is that it is a bystander, rather than a cause."
Coleman never had a full colostomy. She has been in remission from Crohn's since 2007, although she experienced some other health issues as her bowel healed.
She is married with two children, 5-year-old Kobe and 8-year-old Bella
Borody said Coleman has not taken medication for Crohn's since 2007, and appeared to be living without the disease.
"My bowel is beautiful, pink and shiny," Coleman said.