An estimated 3 to 8 million people have symptoms of “Interstitial Cystitis," also called IC or Painful Bladder Syndrome. This disease is often misdiagnosed and treatments hit and miss. Dietary modification helps 85% of patients Millions bounce from doctor to doctor, desperate for answers. They suffer with painful urination, race to the bathroom 20, 30, even 60 times a day, and grieve an eroding quality of life, which often strains intimate relationships. Frequently misdiagnosed as having chronic urinary tract infections or overactive bladder, these patients try everything from antibiotics to antispasmodics with no success. When those treatments don’t work, they search for another doctor and start over. The “lucky” ones are those who find a doctor who knows what these symptoms actually mean,” says Julie Beyer, a registered dietitian and owner of Confident Choices®, “Despite their condition, many patients actually feel a sense of relief to learn their disease has a name—interstitial cystitis, also called IC or painful bladder syndrome.”
The main symptoms of IC are frequent urination, an unexpected urge to get to a bathroom immediately, and pelvic pain. The pain may or may not be perceived as coming from the bladder. For unknown reasons, there is painful inflammation and sometimes ulcers in the bladder lining. Patients feel like they have a bladder infection all the time, but the urine does not show bacteria if cultured. The treatments vary, however dietary changes can make a huge difference in symptoms. Patients often become frustrated since treatment is not an exact science and may require months of trial and error.
There is reason to be optimistic, however. At the recent American Urological Association meeting in Chicago (April 2009), scientists gathered to share research on the enigma that is called IC. Not only are the researchers closing in on a possible cause, they are sharing the development of treatments that have the potential to help millions of people. “Much of this research is based on what IC patients themselves have told us,” said Beyer who has authored two books on IC and diet, “For years, IC patients were insistently and consistently reporting that caffeinated beverages, tomato products, spicy foods, and acidic fruits increased their symptoms. Now, thanks to the work of Robert Moldwin, MD, and Barbara Shorter, PhD, RD, we have research to support what the patients have told us all along.”
People who are experiencing repeat “urinary tract infections” should insist on a urine culture, not just depend on the in-office dip tests. The presence of bacteria usually requires the use of antibiotics. If the culture is negative, it is important to see a urologist who specializes in bladder diseases. This doctor should ask specific screening questions, may put a potassium solution in the bladder to check for a reaction, and may order an outpatient procedure called a “hydrodistention” which expands the bladder to the degree that the urologist can get a good look at the bladder lining. As mentioned previously, dietary modification is one of the key treatments; in fact, over 85% of IC patients’ symptoms improve with dietary modification. “Ironically,” said Beyer, “IC patients should QUIT drinking cranberry juice, which can make IC symptoms worse.” Most importantly, IC patients need to be “patient” with other treatments. Many IC medications and supplements can take months to work. Others may provide relief right away, but may cause temporary drowsiness. Some treatments may work for one person and not another.
The good news is that researchers are slowly putting the pieces of the IC puzzle together. There is hope that since the number of IC patients seems to be several times larger than ever reported before, that more money will be dedicated to finding a cause and better treatments.
Julie Beyer, MA, RD, a Michigan dietitian and IC patient herself, wrote Confident Choices: Customizing the Interstitial Cystitis Diet and Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder to help IC patients determine their personal trigger foods. Her website (www.ic-diet.com) provides information and resources for patients and medical educators. Beyer coaches IC patients on diet and lifestyle modification and is a popular speaker at IC Support Groups and conferences across the country.
If you would like more information about interstitial cystitis, or would like to schedule an interview with Julie Beyer, please call 248-961-3613 or email Ms. Beyer at JulieABeyerRD aol.com.
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