Beating back inflammatory bowel disease
September 20, 2010
By the time an ambulance delivered Jennifer Martin to
UC Irvine Medical Center in late April 2009, the doctoral psychology student was rail thin, deathly pale and in constant pain from her latest flare-up of ulcerative colitis.
In 2007, the 27-year-old Costa Mesa woman had been diagnosed with the chronic and debilitating autoimmune disease that inflames the colon. Suddenly, medications that had kept her symptoms at bay stopped working. Unable to eat or pass food normally, she shed nearly 30 pounds in two months.
“It was to the point, honestly, where I just didn’t want to live any more,” says Martin, who heard her community gastroenterologist say after a colon scan: “I’ve never seen it this bad, it’s completely ulcerated.”
That’s when her doctor sent her to UC Irvine Medical Center, which has the only multidisciplinary comprehensive center in Orange County for patients with complex cases of inflammatory bowel disease.
“Jennifer weighted 82 pounds and she was very sick when she arrived,” says Dr. Nimisha Parekh, director of UC Irvine’s highly specialized Inflammatory Bowel Disease Program, who assessed Martin as soon as she was admitted. “She was not responding to medications and she was losing hope.”
The months of agony and wasting had taken their toll. “Jennifer wasn’t just small in stature, she was small in spirit when we first saw her,” recalls team member Dr. Steven Mills, a colorectal surgeon. But now, after care from Parekh and Mills, she is gaining weight, preparing to hang her psychologist’s shingle and no longer is wracked by pain.
“It has been fantastic to see the transformation,” says Mills, who performed a series of mostly minimally invasive surgeries that left Martin with only small scars and free of the humiliating need to be within eyeshot of a bathroom at all times. “She’s a whole different person, happy, with such boundless enthusiasm.”
About 1.4 million Americans suffer from inflammatory bowel disease (IBD) — either ulcerative colitis or Crohn’s disease, which involves chronic inflammation of the intestines. IBD symptoms include diarrhea, blood in the stool, abdominal pain, bowel urgency and weight loss. Both ulcerative colitis and Crohn’s disease are believed to be caused by the body’s immune system going into overdrive and damaging the lining of the intestinal tract. There is no cure for these conditions but they often can be controlled with medication.
IBD runs in families. Indeed, Martin says an uncle has suffered from it. Both ulcerative colitis and Crohn's disease are found mostly in developed nations, and more often in urban areas than in rural ones. Although IBD has been seen mostly in northern climate zones, cases now are appearing in Asia and South America. IBD typically emerges in teenagers or young adults but can develop in older patients. It also tends to affect people who have other autoimmune diseases, including rheumatoid arthritis, which Martin has battled since childhood.
Medications that suppress the immune response have been used successfully to treat many IBD patients. In Martin’s case, however, even the strongest drugs had become ineffective. Given the extensive ulceration and her lack of response to medications, Parekh and Mills explained that removing her damaged colon was really the best option. In a later surgery, they told her, Mills would be able create a pouch from part of her small intestine to carry waste to the anus and out of her body.
Moreover, they said, the procedures could be done with the aid of a laparoscope, a slender tube that can be inserted through small incisions, all without opening the abdominal cavity, thereby minimizing the chance of infection and shortening recovery time.
The thought of losing an organ overwhelmed Martin. She also knew the resulting internal scarring could make it hard to get pregnant. “I cried for three days,” she says. “My husband and I had just gotten married six months earlier and I knew I wanted to have kids.”
Martin says she came to accept the surgical option because of the reassurance Parekh and Mills gave her, her husband Tony and her parents, explaining the procedures and risks in simple terms and answering their every question directly. “Dr. Mills made me feel like it was going to be OK. He said, ‘You’re going to have your life back, and it’s going to be good.’”
It has been better than good, says Martin, now 28. She’s had some setbacks but was able to take walks with her husband and Daisy, her Chihuahua-terrier mix, within a few weeks after each surgery. Six months after her colon was removed, she was able to eat most foods, albeit in smaller quantities and more frequently. She tips the scales at 100 pounds and is hitting the gym several days a week to regain muscle mass.
Martin also could count on help from the IBD program’s social worker and support group. UC Irvine’s IBD program is unique in that it emphasizes not only treating the patients’ physical condition but also addressing the emotional, psychological and social impacts of the disease.
She now plans to use the doctoral degree she earned in psychology over the last year to help people cope with the mental toll exacted by IBD, arthritis and other chronic diseases.
“When you go through something like this, you learn not to take anything for granted—that every day is a gift,” Martin says. “I owe my life to these doctors.”