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Lynda Carter Fights For IBS

By Adele Slaughter, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.

Lynda Carter gained fame playing Wonder Woman, America's ultimate female superhero. Today she's vanquishing a more insidious villain -- irritable bowel syndrome.

"My mother has suffered for 30 years through misdiagnosis and everything from 'it's all in your head' to diverticulitis," Carter says. "For years she couldn't get an answer, so I thought I'd play the wonderful daughter and get to the bottom of it and take her to UCLA."

"Fifteen years ago when they diagnosed her with IBS, they couldn't help her," Carter adds. "There just wasn't any treatment. My mother attempted to manage her IBS symptoms as best she could.  She is now excited that more attention is being paid to this condition.  She is working with her doctor to determine the best way to effectively manage her IBS."

And as part of a national awareness campaign called "Talk IBS," Carter is working with Novartis and The Society for Women's Health Research, as a paid spokesperson, to promote greater understanding of IBS.  

"She is a generally a very healthy person, doesn't like to take drugs, and is very wary of medications and things," Carter says. "But today she's very excited to talk about what she has. I give her a lot of credit."

IBS is characterized by episodes of bloating, with either constipation or diarrhea or both, and is associated with discomfort and abdominal pain.

"We think that 20% of Americans have symptoms that are compatible with an IBS diagnosis," Margaret Heitkemper explains, director of the Center for Women's Health, University of Washington. "However, only about 10% to 12% actually get a diagnosis."

The Society for Women's Heath Research estimates as many as 1 in 5 Americans has IBS, and about 70% of those who suffer are women. The average age of IBS onset is 29, and the condition often gets better after 60.

Definable foe

"It is a disease that no one talks about," Phyllis Greenberger says, President and CEO Society for Women's Health Research. "It is under-diagnosed and under-recognized. We're trying to get it properly diagnosed."

"There is no blood test, there is no x-ray that you can do to diagnosis IBS," Heitkemper notes. "Doctors have to rule out other diseases, and then if the patient has symptoms that match the Rome criteria, they have IBS."

The Rome criteria, developed by an international group of gastroenterologists, include three months of continuous or recurring symptoms of abdominal pain or irritation that:

  • May be relieved with a bowel movement
  • May be coupled with a change in frequency
  • May be related to a change in the consistency of stools

And two or more of the following are present at least 25% of the time:

  • A change in stool frequency (more than three bowel movements per day or fewer than three bowel movements per week)
  • Noticeable difference in stool form (hard, loose and watery stools or poorly formed stools)
  • Passage of mucous in stools
  • Bloating or feeling of abdominal distention
  • Altered stool passage (sensations of incomplete evacuation, straining, or urgency)

"Because it is so difficult to talk about this basic and private function, women are reluctant to talk about it," Carter says.

While IBS is not a life-threatening disorder, it does impact the individual's quality of life. Many studies have shown that people with IBS miss more work or school, and it can force people to constantly rearrange social plans, decline promotions at work, and avoid traveling.

"Think about your lifestyle and having to know where a bathroom is at all times," Carter says. "I can think about when I had eaten something wrong and all you want to do is go home, you don't want to be out. You just want to crawl into bed and not do anything. People with IBS live that way and make excuses to their families."

Doctors have known for some time that there is no relationship between IBS and colon cancer or diverticulosis and diverticulitis. For years the condition has been thought of as a psychosomatic disorder because doctors could find no physical pathology.

"That is probably why the research has been slow, because it predominately occurred in young women and they couldn't find any pathology," Heitkemper says.

Progress not perfection

IBS is a real condition triggered by stress and diet, and is a functional disorder. Some people might have additional problems with headaches, fibromyalgia, and sleep disorders.

Today, researchers are actively studying what causes IBS and have developed several theories.

"From the science that we have we think that people who have IBS have visceral-hypersensitivity," Heitkemper says, "meaning that something that is usually a normal stimulus to the bowel becomes sensitive or even painful."

"Additionally, the speed at which things go through the bowel is altered. Either that alone, or in combination with the visceral-hypersensitivity, contributes to the symptoms," explains the expert. "The question of what causes IBS is where the most active research is being done."

As Carter knows from helping her mother over the years, there hasn't been a lot of good treatment.

For years and years doctors have focused on adding fiber to the diet or the temporary use of laxatives. For those with diarrhea there have been some anti-diarrhea agents, and for those who have an alternating pattern or a lot of pain, some of the anticholinergic drugs have been used because they have anti-spasmodic properties.

"Today, there are new therapies and some non-drug therapies as well," Heitkemper says. "There is alosetron (Lotronex) that has been re-released, and the recent drug that came out this year is tagasarod (Zelnorm), which again is FDA-approved for women with constipation-prone IBS."

"Both of these drugs work the serotonin receptors in the GI tract, but through different receptors, which is why one helps with constipation and the other with diarrhea," explains Heitkemper. "Because they haven't been out that long, I think clinicians are waiting to see what role they will actually play in terms of managing patients over the long haul."

Additionally, in a large NIH study, researchers looked at cognitive behavior in women with IBS. Individuals spent time with a nurse therapist who was able to help lower their stress levels and change their lifestyles.

The study showed that individuals diagnosed with IBS can make some simple lifestyle changes to improve their condition, including:

Keep a diary of your symptoms and understand the triggers. "Is it something you're eating or does it happen after you eat," Heitkemper says. "A food diary is usually the first line of therapy for IBS. Many people can learn to identify the things that can cause problems."

Simple relaxation - Learn how to do a simple relaxation exercise right before you eat, because for many people, eating triggers abdominal pain. 

Understanding and education - Learn about the condition and make adjustments. When individuals increase fiber because of constipation, at first it can cause gas and bloating. The important thing is not to get discouraged and stick with the plan. People also need to find out what kinds of things the body cannot tolerate, things like sorbitol.

"IBS has been so shrouded in darkness," Carter says. "I know the truth about how people suffer. It is just one more closeted condition that we need to shine some light on because it is a very real medical condition and you're not crazy. I think going into your doctor armed with the knowledge of your own body is empowerment."

For more information about IBS, Click here.

Spotlight Health is the leading creator of celebrity-featured health-issue awareness campaigns, connecting consumers with impassioned celebrities whose personal health battles can open eyes, dispel myths and change lives. Spotlight Health helps sufferers and caregivers meet the challenges of difficult health circumstances with understandable, in-depth medical information, compassionate support and the inspiration needed to make informed healthcare choices.

Created: 1/21/2003  -  Adele Slaughter & Stephen A. Shoop, M.D.

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