While most people don't like to talk about inflammatory bowel disease — it's not exactly coffee chatter — Jennifer Martin is happy discussing how her surgery to treat it saved her life.
In April 2009, the 27-year-old Costa Mesa resident was finishing up her doctorate in psychology when she had a painful flare of ulcerative colitis, which caused extreme pain and the loss of 30 pounds. Already a petite woman, Martin shriveled to 82 pounds.
She was diagnosed with ulcerative colitis in 2007 after her bowel movements started to frighten her. She would go to the restroom up to 20 times a day, and often found blood in her stool.
"I didn't know what was going on and was freaking out," she said.
Because colitis causes the lining of the intestinal tract to deteriorate, Martin compared the act of eating to the sensation of "a knife slicing through my insides."
Martin was first admitted to Mission Hospital in Laguna Beach in April. Doctors ran tests but eventually concluded that there was only one option: surgery.
She was transferred to UCI Medical Center in Orange, the only integrated surgical and medical center for inflammatory bowel disease in Orange County.
Dr. Steven Mills, a colorectal surgeon, said Martin came in with severe malnutrition and anemia.
"I remember she just seemed tiny," Mills said. "I don't mean just in size, but she was just deflated … she had no energy."
Martin's three surgeries involved removing her colon and eventually creating a J-pouch, which took over for the colon.
But Martin had a scare in September, when her pouch twisted. Doctors at UCI Medical Center had to go in and attach it to her backbone so that the scar tissue would properly form.
Dr. Nimisha Parekh, director of UCI's Inflammatory Bowel Disease Program, describes Martin's recovery as nothing short of miraculous.
"Her story is inspirational. She didn't give up," Parekh said. "She continues to face her challenges with such strength and calmness."
Two weeks after her second surgery, Martin completed her dissertation. However, she still has to complete intern hours before she receives her license as a psychologist.
Then one day she ran an idea by Parekh. She decided she'd like to specialize in therapy for those affected by colitis, Crohn's disease and other chronic illnesses.
"It has a huge physical toll, but there's a huge mental toll as well," Martin said.
During painful flare-ups and between surgeries, Martin experienced depression and anxiety — two ailments commonly paired with the patients affected by inflammatory bowel disease.
"I was feeling so sick and my family wanted me to get better and they were trying to help," she said. "They'd say, 'Let's go for a walk' and I would have huge anxiety … 'What if I have to go to the bathroom and I can't get back in time?'"
She also felt guilt for putting her husband through so much stress. The couple had only been married eight months when she underwent surgery.
Parekh believes specialized therapy could be an important component to patient recovery. Many patients are young adults, she said, and scared at the thought of surgery.
"It's not a condition where people can talk about it over the dinner table like you do with diabetes, high blood pressure or heart problems," Parekh said.
Most patients, they said, don't discuss the physical or mental aspects of the disease.
"People don't want to talk about what they're going through because it's so embarrassing," Martin said. "It's not something people want to share. I think it should be talked about more."
Martin is talking about it.
In October, she spoke at the Crohn's & Colitis Foundation of America's annual educational symposium, sharing her story with people affected by the diseases.
Now Martin is earning her intern hours at South County Psychotherapy in Laguna Niguel. She's asking for referrals from UCI Medical Center, hoping to help patients.
The good news: Two months after her last surgery, Martin is 20 pounds heavier and back to enjoying eating as much food as she likes.Copyright © 2015, Los Angeles Times