Pregnancy With a Chronic Disease
Eat this, not that. Take this vitamin, but forget that one. Gain some weight, but not too much.
Women are inundated with information about what to do and avoid when expecting. But for some women with chronic health conditions such as Crohn's disease and lupus, these recommendations go a step further to keep mom and baby safe.
"We think of pregnancy as a stress test for the body" says Dr. Katherine Economy, a maternal-fetal medicine physician at Brigham and Women's Hospital in Boston. "... If you add the stress of pregnancy to [a] disease, for some women it can be very serious."
But having a chronic disease does not necessarily mean that you can't have a healthy pregnancy. A good rule of thumb with any chronic disease is to make sure symptoms are under control before conception, and to seek care from multiple specialists to ensure the condition is managed carefully during pregnancy, Economy says. Two women who did just that shared their experiences with U.S. News and offer advice for others.
Conceiving With Crohn's
Stephanie Hughes carries a bag wherever she goes. In fact, she's quite attached to it. No, it's not Michael Kors or Tory Burch. It's an ostomy bag, a pouch-like medical device that collects fecal matter, because Hughes has Crohn's disease.
The chronic inflammatory condition impacts the intestines and is often associated with unpleasant symptoms related to the gastrointestinal tract, including persistent diarrhea, rectal bleeding, an urgent need to defecate, abdominal cramps and pain, the feeling of an unfinished bowel movement or constipation. The disease can also cause symptoms similar to those of irritable bowel disease, including fever, loss of appetite, weight loss, fatigue, night sweats and the loss of a normal menstrual cycle.
Hughes, 29, of Raleigh, North Carolina, says her symptoms began around age 10, but she wasn't diagnosed until age 13.
"Before then, I had been able to control things with diet, but when I turned 13, things got bad and I wound up in the hospital for about a month," Hughes says. "... I spent a good part of high school dealing with flares here and there."
It wasn't until she left for college that she had another bad flare-up, landing her back in the hospital for two weeks during her freshman year. Eventually she learned how to live with it, but she was still sick most of the time. While most college students go out partying with friends, Hughes simply didn't have the energy.
"I always had to be careful about what I ate when I did go out, and the first thing I did was scope out where the bathroom was," Hughes says.
To make matters worse, she always wanted to become a runner, but her lack of energy and constant bathroom woes made it nearly impossible. Frustrated, she looked for a treatment.
In 2011, she tried an investigational drug that wound up causing more harm than good, as the side effects impaired her ability to think clearly.
The next step was colectomy, a surgery that removes all or part of the colon, but she was hesitant. Instead, Hughes decided to take herself off all medications, which didn't bode well. The joint inflammation the medications had kept at bay became intolerable, and she had to quit her job. "It got to the point where I couldn't get off the couch," she says. "That's when I realized how truly sick I was."
Finally, Hughes agreed to the colectomy, which created an ileostomy -- an opening in the abdomen that helps remove waste and connects to the ostomy bag.
At first, she had only part of the intestines removed, but later the entire colon came out. "It was the best decision I've ever made. It completely turned my life around, almost immediately," she says.
Although the ostomy bag is attached to her abdomen 24/7, she was still able to become a runner. Five months after her surgery, Hughes participated in her first triathlon and a half marathon one year later.
Hughes married in 2010, and she and her husband wanted to experience parenthood. Currently in her third trimester, she admits she was worried if she could even conceive. To her and her husband's surprise, Hughes became pregnant after just three months.
She had been told that she could develop scar tissue due to having two surgeries, which could have interfered with conception. She did not have this complication, but knows that others with the disease often do.
"Once we found out, it was amazing knowing that with everything I had been through -- and even with surgeries -- I was still able to do that," she says. "It was a weight off my shoulders, and an amazing gift to us."
She's been told by her doctors that she should have no further complications and that she's not considered to be high risk.
"The one thing I do have to look out for is an intestinal blockage, which could happen in this later part of the pregnancy since my intestine comes around the front of my uterus. I have not dealt with that at this point, but it's something I know to watch out for and I avoid certain foods that are difficult to digest because of it," she says.
Dehydration can also be an issue, she says. "Having an ostomy dehydrates you, as does pregnancy, so it's doubly important for me to drink lots of water."
Pregnancy with an ostomy bag is possible, and there aren't any extraordinary sanitary issues associated with it, Hughes explains.
"I treat it the same way as I would imagine someone in the health care field would with their job and the things they come into contact with; just washing hands well before and after any contact with the stoma itself," Hughes says. "For the most part, it's very clean."
One concern for women with Crohn's is how the disease will react during pregnancy. There are some cases where symptoms worsen, though some improve or stay the same. Because of her surgeries, Hughes has not had any symptoms of Crohn's while pregnant.
Defying Lupus During Pregnancy
Erin Story, 33, of Nixa, Missouri, has lupus -- a chronic, autoimmune disease that can damage the skin, joints or organs.
She remembers feeling ill in 2008, but it wasn't until 2010 when she began experiencing fatigue, hair loss and rashes on her face that she found out it was serious. She was active and used to running five days a week in the sun. Lupus had other plans.
Even though she wore long sleeves and sunscreen, her skin became sensitive to sunlight. "I just knew something was wrong," she says.
After finding out she had lupus, the medications required to manage her disease caused aggravating side effects. "Fatigue was probably the worst part," she says. "I'm a massage therapist, and you have to have energy to do that."
She was also worried about the risks associated with pregnancy. So she started searching online for complications she could encounter while pregnant and burdened herself with unnecessary worry.
She says that while it felt good to have diagnosis, the disease itself terrified her.
"Just the possibility of my health taking a turn for the worse, or not being able to get pregnant ... it really scared me," says Story, who blogs at Defying Lupus.
Story's doctors recommended she not try to conceive until she had been flare-up free for six to 12 months. Flare-ups can include a daunting list of symptoms, such as: extreme fatigue; headaches; painful or swollen joints; fever; swelling in the feet, legs, hands or around the eyes; chest pain; a butterfly-shaped rash on the cheeks and nose; sunlight sensitivity; hair loss; abnormal blood clotting; fingers that turn white or blue when cold; and mouth or nose ulcers.
"At that time, they put me on two medications, prednisone and plaquenil. They seemed to help, but later that year, my white blood cell count dropped dramatically and I ended up having to take different injections to raise that. That's one thing that my body has always struggled with." But she did manage to get her symptoms under control with the injections and long-term prednisone.
Despite her concerns, Story gave birth to healthy, 5-pound twin boys on Tuesday after a 24-hour labor. "They're doing great," Story wrote in an email. "We are a little crazy about them."
Taking Pregnancy Precautions
In addition to ensuring symptoms are reigned in before becoming pregnant, Economy suggests that women with chronic diseases have any surgeries they've been putting off, take prenatal vitamins, watch their weight and diet and take folic acid supplements about three months before conception to ensure the healthiest pregnancy possible. She also suggests women make appointments with their specialists before trying to become pregnant to develop a plan.
Economy notes that some women are afraid of passing along conditions to their child, but she assures that most underlying medical conditions are not inherited.
"The best way to prevent any disease in their child is to have a very healthy pregnancy," she says. "The better intrauterine environment, the less likely their child is to develop disease during childhood and young adulthood."
Often, women "come in so stressed out, they can't even enjoy their pregnancy," she says.
Hughes, who started the blog The Stolen Colon, encourages pregnant women with chronic illnesses to talk about their health conditions with others. Her only regret is not relaxing more, she says.
"I wish I had not gotten myself quite so worried before I needed to, and had trusted my body a little more and listened to it. That's one of the biggest things now after 16 years of living with [Crohn's]," she says.
Story's recommendations to other women is simple: "Do the best you can to be as healthy as you can. That's all you can do," she says. "Sometimes, you don't have any control, but you do have control over getting enough rest, eating healthy food and making sure that you see your doctor regularly."
Samantha Costa is a Health + Wellness reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at scosta@usnews.com.
