Posted Dec 4, 2012

Pam Brown and Ashley Pare share many things as sisters. One of the more unpleasant things they share, however, is Crohn’s disease.

Both sisters have the disease, which can be described as an inflammation of the body’s digestive tract. The sisters were diagnosed about 10 years apart, but each understands what the other has to go through.

“I was told I wouldn’t be able to have kids,” Brown said. Brown, 34, is the mother of a 3-year-old daughter. Pare, 31, was told that having children could lead to a flare-up of the disease, but she did not experience problems having her two children, now 5 and 3.

They still face many challenges, however. “She’s severe, I’m mild,” Pare said of Brown. They both have other health problems which may be related to Crohn’s.

The women grew up in New Market. Their parents, Rollie and Pam Belles, own Belles’ Sports Bar and Grill in Frederick and Green Valley Carryout in Monrovia. Before being diagnosed, Brown, then a freshman at Linganore High School, felt sick after returning from a trip to Europe.

“Back then, nobody knew much about it,” Brown said.

Crohn’s disease was identified in 1932. It most commonly affects the small bowel and the beginning of the colon, but it may affect any part of the body’s gastrointestinal tract, from the mouth to the anus. Brown has problems from her esophagus to her colon. Crohn’s typically reduces the body’s ability to absorb protein, fat, carbohydrates, water, vitamins and minerals, which means the body can suffer from nutritional deficiencies.

People with Crohn’s often have the urge to go to the bathroom, and when the disease is active, being near a bathroom is very important. They also have stomach pains, which are generally more severe than those brought about by minor digestive issues.

Crohn’s is diagnosed through a battery of tests, because the symptoms can mimic those of other conditions. No single test can diagnose Crohn’s with certainty. Patients get endoscopies and biopsies. According to the Crohn’s and Colitis Foundation of America, or CCFA, the disease may run in families. The sisters have three cousins who also have Crohn’s.

Brown missed much of high school because of Crohn’s. She had a home tutor much of the time. She attended school for brief periods, while at the same time going to various doctors to get treated. One doctor wanted to remove part of her colon, but Brown resisted, and later she found out that the surgery would not have helped.

She took up to 30 pills a day to control her symptoms. Crohn’s patients are often prescribed medicine designed to control the immune system’s abnormal inflammatory response, which causes the symptoms of Crohn’s. Suppressing inflammation offers relief from symptoms including fever, diarrhea and pain, and allows intestinal tissues to heal. Medicine can help patients extend periods of remission. Still, the medications do not cure Crohn’s.

Prednisone, a corticosteroid, is effective for flare-ups of Crohn’s, and many Crohn’s patients take corticosteroids. Although corticosteroids are not anabolic steroids, they still have significant side effects, including loss of bone density. Brown has developed osteopenia, a precursor to osteoporosis. The sisters also take other drugs to suppress the body’s immune system and treat the inflammation.

People with Crohn’s also need to pay attention to their diets, and figure out what causes an outbreak. It can be different foods for different people. “Sometimes, I can eat something, and the next day I can’t,” Brown said. “I couldn’t drink coffee, and now I can.”

Pare said for her, butter is a trigger, as is pork. Although food can be a trigger, the women admitted they don’t always refrain from eating that food. They just realize that the next day, they will not feel well, and will need to be near a bathroom. Crohn’s patients are often counseled to eat soft, bland food without a lot of spice.

Stress is another trigger of Crohn’s outbreaks, and Crohn’s patients are counseled to keep stress to a minimum.

Crohn’s patients can lose a lot of weight, because their bodies often don’t absorb food. Yet, constant rounds of prednisone cause their bodies to retain water, and look overweight.

For Crohn’s patients, even a simple cold can turn into something more serious. A stomach bug can be extremely painful. Brown also gets daily migraines. Pare gets occasional migraines.

Pare was diagnosed in 2003. She had seen her sister suffer, and thought she might be developing some of the same symptoms, but hoped that she wasn’t. Still, she does not have as severe a form of the disease as her sister.

Pare’s bones and joints often ache, from years of steroids, and both sisters have suffered from calcium loss in their teeth.

“I’m glad I got to have it first, being the older sister,” Brown said with an ironic smile. Besides Crohn’s, Brown has a rare skin condition, that leaves her hands dry and scaly. The condition, a type of keratosis, causes her skin to age prematurely. It may be related to Remicade, another drug she takes for Crohn’s, but she’s not sure. She also gets what she calls “roid rage,” from anger that results from long-term prednisone use, and controls that with an anti-anxiety drug.

The sisters have two brothers, neither of whom has Crohn’s.

Both are able to work part time in the family businesses, which means they can work when they are able. Their parents have also helped them with medical bills. Pare is married, while Brown is a single mother.

Crohn’s causes complications that most people don’t think about. “We couldn’t do things with our friends,” Brown said. In their teens and 20s, simple activities like going to the beach were out, because there are no bathrooms on the beach. Pare worried that after having her oldest child, she wouldn’t be able to rush into a bathroom while out driving. She later realized that she could quickly grab his carrier. It’s a little more complicated with two children, but she makes it work.

The sisters recently had a fundraiser for CCFA at Belles’, and hope to have more. They hope research will make lives easier for others with Crohn’s.

Brown said she’s noticed a slight improvement over the past few years, and said that Crohn’s sometimes gets better as patients get older. Both sisters hope that’s the case for them.

©2012 The Frederick News-Post (Frederick, Md.)

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