When you think of fate and destiny, inflammatory bowel disease usually doesn’t come to mind.
But Jennifer Wilford, an employee at ASU’s Parking and Transit Services, believes she was meant to be with her husband, Jeremy, after they were both diagnosed with different types of inflammatory bowel disease.
Inflammatory bowel disease is characterized by a chronic, strong immune response to food and other particles in the intestine, which leads to inflammation, according to the Centers for Disease Control. Crohn’s disease and ulcerative colitis are two main types of IBDs.
Jennifer Wilford, 26, and her husband are both participating in the “Take Steps Phoenix for Crohn’s and Colitis” walk happening May 7 at the Phoenix Zoo in order to raise awareness and funds for research to find a cure for both conditions.
She met her husband Jeremy Wilford, 32, at her job in Los Angeles in summer 2007, and their second anniversary is coming up next month.
“We started dating, and after only a couple of weeks, I thought that I should tell him that … at the time I was diagnosed with ulcerative colitis and had it since high school,” she said.
Jennifer Wilford was hospitalized for an extended period of time previously and thought her then-boyfriend should know, but he didn’t mind.
“A few months later, he got sick and he said ‘Remember those symptoms that you told me about a couple months ago?’”
He told her he had been experiencing those symptoms for a week, and he was in so much pain he could barely stand up.
Symptoms for ulcerative colitis include diarrhea, bloody stool, cramps, abdominal pain, sudden bowel movements, loss of appetite, weight loss and fatigue, according to the CDC.
They were about to go on a vacation, but he ended up having to go the emergency room, and he was put to the top of the list.
The next day he was diagnosed with ulcerative colitis.
“That was a shocker because it’s genetically related, you can’t give it to somebody,” she said. “And for two people to meet completely separate … was 1 in 10 million, I think, the chances of that happening.”
They hadn’t met through any Crohn’s or colitis awareness events.
“As far as I know, we’re the only situation where two people met completely independently and both turned out to have the same issues,” she said. “We thought that meant we were meant to be.”
Inflammatory bowel disease affects many Americans.
“Each year, about more than 30,000 Americans are diagnosed with Crohn’s or UC,” said Jamie Rogers, the Take Steps Walk manager at the Crohn’s and Colitis Foundation of America’s Southwest chapter.
Jennifer Wilford said she was originally diagnosed with ulcerative colitis, but currently has Crohn’s disease. Doctors realized this after removing her colon didn’t relieve her symptoms.
“The theory is, if you have ulcerative colitis, the problem is only in the colon,” she said. “So if you take that out, then you take out the disease and the whole problem’s gone. It had just gotten to the point where I didn’t even care anymore … if nothing else works, take it out.”
Since the surgery, she has been taking medication that helps control her symptoms.
Symptoms for Crohn’s disease are similar to ulcerative colitis, but there are some differences.
Jennifer Wilford said for ulcerative colitis, there are ulcers in the colon that have to be controlled by medication.
“With Crohn’s disease, it can affect you anywhere along the digestive tract,” she said. “Anywhere, wherever food can go, it can affect you.”
Some people also experience joint pain and other symptoms.
There is no cure for Crohn’s and colitis, although surgeries, procedures and medication can help relieve symptoms.
Jeremy Wilford, an ASU alumnus who graduated in 2001 with a bachelor’s degree in communications, has ulcerative colitis and multiple sclerosis.
MS is a disease that invades the central nervous system, and includes symptoms like limb numbness, paralysis or vision loss, according to the National Multiple Sclerosis Society.
He was officially diagnosed with ulcerative colitis after he started dating his current wife, but he thinks he started noticing symptoms in college.
“I was like, ‘Is it possible to catch this?’” he said jokingly. “Later on we found out it’s infinitesimal odds for us to have ended up together with the same disease. The only time that happens is when people meet each other at a conference or something.”
Rogers agrees that the couple shares a unique story.
“As far as two people just kind of randomly running into each other, I think it’s very ironic and … kind of funny in a weird way,” Rogers said.
Despite having each other, the Wilfords recognize how challenging the conditions can be. Yet, they also bring optimism to their circumstances.
“We’re both very positive people I think in general, and we bring that to our diseases,” Jennifer Wilford said. “Just being … positive and optimistic about it is the only way I’ve ever approached it, and I’ve had it for 10 years now.”
Because of his MS, Jeremy had to quit singing and playing the piano for his indie band Shattered Atom, and he recognizes that the conditions have altered the course of their lives. But Jennifer said it’s important to still set and keep goals.
“I don’t build goals around my disease. I have the same goals that I would otherwise,” she said. “It’s just I have to work toward them differently. Especially now that I don’t have a colon, my energy just is not what it used to be, and I’ve had to learn to be OK with that, to kind of accept that at the end of the day, I’m not going to be able to do the last thing on my list for the day.”
She notices that others don’t have the same optimistic outlook, especially other people with MS at a local support group meeting.
“Everything centered around their disease and how it disabled them. It wasn’t positive, it was a real downer,” she said. “If you let it control you, your quality of life just isn’t what it could be … The disease will slow me down every once in a while, but I just try not to let it.”
Sometimes in her modeling, she has to worry about her ostomy bag showing. This bag allows her to expel waste, since her colon is removed and she hasn’t had her final surgery so she can go to the bathroom like she used to.
“That’s the only instance where I felt like I wanted to hide the fact that I had the ostomy,” she said. “Sometimes I’ll wear a light T-shirt, and you can see the outline, and I’ll get looks sometimes and I don’t care.”
Many people are uncomfortable talking about these conditions, and that’s part of the reason Jennifer started volunteering with the Crohn’s and Colitis Foundation of America in 2004.
“It’s not dinner table conversation, to be sure,” she said. “It’s embarrassing. It gets a little graphic.”
Her husband was so embarrassed that he waited a long time before getting treatment.
“He didn’t tell me until it got to the point where he couldn’t hide it any longer,” she said. “I think that happens to a lot of people. It’s not like … breast cancer, where everybody knows about it, everybody can talk about it. It’s not as well-known and it needs to be so that people who are suffering with it can get onto the medications to control it.”
Rogers said that is part of the purpose of the awareness walks and education programs, so people don’t feel embarrassed about their conditions and know others are suffering as well.
“Nobody really wants to talk about what’s going on in the bathroom,” Rogers said. “A lot of people tend to be very modest and very shy about it and … don’t even want to go see the doctor about it.”
This embarrassment can lead to underdiagnosis.
“Unfortunately there are probably a lot more people out there who are suffering with either Crohn’s or colitis and haven’t even gone to their doctor yet,” Rogers said.
There is more awareness, however, with celebrities like Pearl Jam guitarist Mike McCready talking about his battle with Crohn’s disease.
LaTovia DeBouse, a human communications and political science junior, is volunteering with members from her sorority Sigma Gamma Rho at the upcoming Phoenix walk.
“[Jennifer’s] a really giving person,” said DeBouse, who works with Jennifer Wilford at PTS as a cashier, and said Wilford approached her because she’s a member of a sorority.
“In our sorority, one of our main missions or goals is service,” DeBouse said. “I just like doing it just to give back.”
Besides the different walks, Jennifer Wilford said a summer camp for children put on by the Crohn’s and Colitis Foundation of America, called Camp Oasis, is a way to help people who suffer from the conditions. A lack of awareness of Crohn’s and colitis sometimes leaves these programs underfunded.
“This camp … might be the best thing for these kids, because they’re in and out of the hospital, they’re taking all these medications, their bodies fluctuate,” said Jennifer Wilford, who volunteered as a camp counselor one year. Her husband played in his band twice at the camp.
The camp allows the children to be around others who experience the same symptoms and problems they do.
“They share stories with each other, they give each other tips on how to manage symptoms, how to manage … side effects from drugs,” she said. “It builds their confidence and they look forward to it throughout the year.”
Children as young as 7 attend the camp. Jennifer Wilford has seen a child as young as 3 have the conditions.
“Unfortunately it’s all ages,” Rogers said. “I know the stereotype that people believe is that it’s an older disease, but it’s happening in children … it’s happening to everyone.”
Reach the reporter at reweaver@asu.edu
