Breaking the Silence About Chronic Disorders
When she shops, Vicky Scofield checks for restroom availability first (and she finds shop restrooms are often limited to staff use only).
After she had made several trips to the restroom while attending a dinner party one evening, a fellow guest bluntly asked Scofield if she was bulimic.
"I was brutally embarrassed," recalls Scofield, "but told her I had an illness that required I be near the bathroom."
Embarrassing questions and frequent trips to the bathroom are only the tip of the iceberg for Scofield. The illness she suffers is Crohn's disease, once called the closet disease. No one who has it likes to discuss it or its many debilitating symptoms and side effects.
Crohn's disease is a chronic disorder that causes inflammation and ulcers anywhere throughout the gastrointestinal tract, from the mouth to the anus. It also "tunnels" through the layers of the intestine, reaching other organs like the bladder or skin.
The tunnels, called fistulas, are a common complication and often become infected. Sometimes fistulas can be treated with medicine, but in some cases they may require surgery.
Scofield says Crohn's disease usually flares up at different points during a person's life, usually during early teenage years, during the early 20s and generally not again until the 60s. Symptoms include high fevers, diarrhea, gas and bloating.
Nutritional complications are common in Crohn's disease. Deficiencies of proteins, calories and vitamins are common and may be caused by poor dietary intake, intestinal loss of protein, or poor absorption, also referred to as malabsorption.
Other complications associated with Crohn's disease include arthritis, skin problems, inflammation in the eyes or mouth, kidney stones, gallstones or other diseases of the liver and biliary system.
Some of these problems resolve during treatment for disease in the digestive system, but some must be treated separately.
The disease made itself known to Scofield as a young teen. She was rushed to the hospital with a high fever but was diagnosed with walking pneumonia. Throughout college she was told her nerves were causing the symptoms.
After a complicated pregnancy and the birth of her third child, she lost 40 pounds too quickly; she suffered diarrhea and vomiting and went to the doctor who prescribed valium for her nerves.
After the symptoms worsened, she went to the emergency room and was finally seen by a physician who looked closer and diagnosed Crohn's disease.
Within a year, Scofield had a foot and a half of diseased small intestine removed.
In all, Scofield has had six small bowel resection surgeries, taking half of her small intestine and half of her large intestine. Nutrient absorption has become a problem for her, and the change in diet caused a kidney stone. She takes B-12 shots and potassium.
For a period of two years, she was fed intravenously every night to maintain the nutrition levels the disease depleted. When she feels the disease flaring up, she reverts to a diet of bananas, rice, apple sauce and toast for a day or two; if that doesn't help she turns to a clear liquid diet, including Jell-0 and chicken broth.
"There's no known cause, and there's no known cure," says Scofield. "There's not really a magic bullet for every person so treatment varies. The frustrating part is that it affects people differently."
In the spring of 2004, vascular surgeon Allen Averbook found himself in a similar situation.
"I got sick pretty quickly," says Averbrook. "I thought it was a bad illness, maybe a bad gastrointestinal flu. There was a rotting feeling in my stomach, a sour, deep-down horrible feeling when I was really sick."
He was forced to take a few days off, but those few days turned to 10, and before he knew it, he'd lost 30 pounds. However, he went back to work.
"We're used to not feeling well but keeping everything under control and working. I just got back to work and to deal with carrying on but was really quite ill," says Averbook.
Different tests were run, different medications were tried. However, the nature of Averbook's work made it difficult to schedule a colonoscopy, which is what he really needed.
Through the colonoscopy, doctors diagnosed Averbook with ulcerative colitis.
Ulcerative colitis is also an inflammatory disease; however, it differs from Crohn's disease in that ulcerations are limited to the inner lining of colon, or large intestine. The inflammation also extends through the colon in a continuous manner without any "skip" areas characteristic in Crohn's disease.
Ulcerative colitis is also difficult to diagnose.
"Everyone's experience is always a little different, because it varies in how it manifests and how people react to it," says Averbook.
He was prescribed prednisone, a powerful steroid with side effects often as serious as the condition it treats.
"Prednisone is just a very unenjoyable experience. I suffered insomnia; I felt quite jittery. I probably got more done in the house in those hours I wasn't sleeping," he says jokingly.
The steroid took its toll on Averbook's work.
"There was a lot going on in my life emotionally with the illness," he says. "I worked for a couple of weeks but got to the point where I was feeling like I wasn't sure I could keep it together caring for patients. Basically I needed to take time off."
Averbook has started taking other medications that could diminish the future need for steroids.
Averbook's situation was made worse when his doctors found a tumor in his small bowel. The ulcerative colitis had to be brought under control before physicians could perform surgery on the tumor.
While he spent a couple of months recovering, other side effects cropped up: a migratory form of arthritis.
"That involves the majority of joints in your body," explains Averbook. "After a few days it may go away and show up in another area. Typically the onset will coincide with the flare-up of intestinal problems, but I'm still having chronic problems with my knees, ankles, hands and wrists."
Ultimately, Averbook wasn't able to return to work.
"Emotionally that was such a disaster for me and it's still hard," he says. "Your whole identity is tied up into what you do," he says. "You take pleasure in the people you're working with and I'm removed from all that."
After that embarrassing episode at the dinner party, Scofield decided to be more open about her disease.
"A lot of people are in denial," she says. "They don't tend to reach out, and denial can hurt you more than anything."
In September she formed the Pinehurst Area Crohn's and Colitis Foundation of America Support Group.
The group meets on the first Wednesday of every month at Moore Regional Hospital's conference room C from 7 to 9 p.m.
Scofield says the guests speak almost every month, with topics ranging from holistic medicine and new medications, to physical therapy and psychiatry.
As with many support groups, however, the information-sharing among members is probably more important to those suffering from either disease.
"In the last five years we've really begun to see a face put to the disease," says Scofield. "People talk about it more. It's so nice to know other people have it, but the information you can get at the support group meetings, information about medicines or what works for other people can be so useful."
Although he's a surgeon and knows much of the medical elements of ulcerative colitis, Averbook benefits from the support group, too.
"There's always something to learn," he says, "whether it's just dealing with some of the components of the disease or talking to a physical therapist about the arthritis. There's knowledge to be gained about how to live with it and accept it, and support to be gained in knowing that you're not alone. It's definitely an outlet for emotional support if and when you need that. I realize that what I'm going through is okay. Two years ago, I felt the commiserating would have been okay, having somewhere to turn, be supported, advised, understood. I think that's what we're all looking for in life."
For more information about the support group, contact Vicky Scofield at 910-687-0066 or send e-mails to email@example.com.
Mary Griffin may be reached at 693-2482 or mgriffin@ thepilot.com.
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