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Mystery Disease Causes Untold Misery

Imagine pain every time you pee. Then imagine having to go every 15 to 20 minutes. That’s what it can be like to have IC, also known as interstitial cystitis.

Although symptoms are similar to a urinary tract infection, IC has no clear cause. Certain foods or beverages may aggravate this inflammatory condition. IC can be very hard to treat, and those who suffer from it often feel frustrated.

Several years ago we received this letter:

“I have IC (interstitial cystitis), a painful chronic disease. I have urinary pain, urgency and frequency. It has also resulted in painful intercourse and waking every 30 minutes to an hour at night to use the bathroom. I go 15 to 25 times a day.

“I’ve become depressed and anti-social. I take Elmiron, Prosed/DS and Enablex. Most people I know think of my problem as a bladder infection. They aren’t familiar with IC.”

The cost of a month’s supply of these three medications is approximately $650. They don’t cure IC, and don’t always relieve the symptoms completely. That’s why a survey conducted recently by the Interstitial Cystitis Association found that many people with IC turn to complementary and alternative medicine (ICA Update, Summer 2009).

High on the list of helpful therapies is avoiding dietary triggers. These often include acidic or spicy foods. Alcohol and caffeinated or carbonated beverages are frequent culprits. MSG and hydrolyzed vegetable protein also may pose problems. Each person needs to keep a food and symptom diary to determine which foods are responsible, since they vary significantly from one individual to another.

One reader asked for advice on coping with IC:

“I was diagnosed with interstitial cystitis about a year ago. My doctors tell me that only diet can make a real difference. I’m frequently tired, perhaps because I can no longer eat most vegetables or concentrated soy products.

“I’m probably missing out on lots of important nutrients, but vitamin pills irritate my bladder. Avoiding soy is especially problematic because I am a vegetarian.”

We consulted urologist Betsy Kavaler, MD, about this question. Dr. Kavaler responded: “I can’t tell you how many women are as confused and frustrated as you are! Dietary modifications can be helpful for interstitial cystitis, but with moderation. I recommend that you reintroduce soy into your diet because you need the protein. Vegetables are essential as well for bowel function and for their nutrients. You might try taking Prelief before eating soy if you feel that it is irritating your bladder. Generally, it takes one to two days to notice if a food causes a flare.”

The product Dr. Kavaler mentioned, Prelief, was also identified as helpful in the ICA survey. This over-the-counter supplement contains calcium glycerophosphate to counteract the acid in foods and beverages like orange juice or coffee. A study in the journal Urology (Jan., 2008) confirmed that Prelief (a sponsor of our Web site) can be very effective for easing the symptoms of IC.

Whenever an inexpensive, widely available treatment offers help for a painful chronic condition, we like to let people know about it. IC sufferers can learn more about Prelief at prelief.com.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.”.
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