February 2014 Issue

The Urgency of Interstitial Cystitis — How Diet Can Improve a Crippling Disease
By Juliann Schaeffer
Today’s Dietitian
Vol. 16 No. 2 P. 34

“Sometimes you get smart about stuff you never wanted to be smart about,” says Julie Beyer, MA, RDN, referring to interstitial cystitis (IC), a chronic bladder disease that causes debilitating pain and can take over patients’ lives if not treated appropriately.

Beyer is one of the foremost experts on the disease—and also a patient. She was diagnosed with IC in 1998.

She has done the research (scrutinizing what little of IC has been studied thus far while also being a staunch advocate for more research to be conducted) and has felt the pain of IC firsthand. Now she’s spreading the word about this disease to every dietitian she can find. Why? Because IC patients are in dire need of help, Beyer explains, and dietitians are in a great place to provide that aid. It turns out diet modification can improve symptoms for many IC patients, and recent American Urological Association guidelines even recommend physicians refer IC patients to RDs for nutrition guidance.

“You may be the one consistent health care provider who spends more than 10 minutes at a time with these patients,” says Beyer, who’s written several books on IC, including Interstitial Cystitis: A Guide for Nutrition Educators. “Patients really need someone who they can sit down and spend some time with, and you may be that one person. Be that one person.”

However, before RDs can provide that much-needed relief, they first must meet the IC demons they’re up against.

What Is IC?
According to the Interstitial Cystitis Association (ICA), IC is a condition that consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency. “The three things to remember are pain, frequency, and urgency,” Beyer says. “Those are the three cardinal symptoms.”

IC also goes by many other names, including painful bladder syndrome, bladder pain syndrome, hypersensitive syndrome, and pelvic floor dysfunction.

According to the ICA, 90% of IC patients are said to have nonulcerative IC, which is marked by pinpoint hemorrhages in the bladder wall. The other 10% have ulcerative IC, which is named for the Hunner’s ulcers, or red, bleeding patches found on the bladder wall.

IC symptoms can be similar to those of a bladder infection, but the difference is that IC patients will have sterile urine. Thus far, research points to a damaged bladder lining as the biggest culprit behind IC.
The most common IC symptom is pain of various types and severities. “Most common symptoms include pain with a full bladder, relieved on voiding,” Beyer says. “Patients also may complain of other pain that may or may not be perceived as coming from the bladder. Sometimes people will say that there’s rectal pain or cramping pain. They may have pins and needles or shooting pains down their legs or chronic back pain. All of these things are potentially coming from the bladder.”

Other symptoms include frequency and urgency that can begin suddenly, which can create anxiety and cause social embarrassment for patients, as well as nocturia (voiding at night). Painful intercourse and pain associated with hormonal fluctuations premenstrually and during perimenopause also are commonly associated with IC.

Because researchers have only just begun to evaluate the specifics of IC, it often can take several years for patients to get an accurate diagnosis. “So often patients go to providers—dietitians included—and they come away frustrated because they feel the person doesn’t understand what they’re going through, and it can really create animosity between patients and the medical community,” Beyer says. “I’ve seen that over and over again.”

Thankfully, knowledge and awareness of IC is spreading in the health care community, and Beyer hopes that the more providers learn about IC, the less patients will suffer. “I want to instill confidence in dietitians so you can instill confidence in your patients,” she says.

Just how many people are suffering from IC? Beyer says when she was diagnosed in 1998, that number was estimated at 700,000 and consisted mainly of women. But findings from the RAND IC Epidemiology Study, which came out in 2009, upped that number significantly from 2.7% to 6.5% of US women, which translates to 3 to 8 million women.

Beyer estimates the number of people currently affected by IC could reach as high as 11 million to 12 million, adding that it affects men and children as well.

Treatment and Diet Modification
Currently, there’s only one medication available that specifically treats IC, Beyer says: pentosan (ELMIRON). And while having one medication is better than none, pentosan helps only 30% to 40% of IC patients.

Antihistamines, antidepressants, and narcotics can help some patients, Beyer says, noting that physical therapy, surgical intervention, and bladder removal are additional treatment options, although not the most ideal.

A host of self-care treatments, including stress management, warm baths, and sleep, also are recommended. The most promising self-care treatment relevant to RDs is diet modification.

Beyer is the first to note that research on IC and diet still is in its infancy, but she says that while clinician and patient observations previously shared over the Internet fueled early versions of an IC diet, the scientific evidence has since started to trickle in.

For example, Beyer notes a 2004 ICA online survey that found 92% of IC patient respondents reported that certain foods and beverages made their symptoms worse, with more than 84% of respondents stating they got some symptom relief from changing their diet. “At the time, there was no other therapy that could boast those numbers—not even close,” Beyer says.

Then in July 2007, formative research on IC and diet was published in The Journal of Urology, which listed the top trigger foods for IC. “These foods were the same foods that patients had been talking about for 20 years, validating patients’ experiences shared via Internet message boards and face-to-face support groups,” Beyer says.

In 2011, the American Urological Association published guidelines that specifically recommended diet modification as one of the first-line self-care therapies for newly diagnosed IC patients and RDs as the vehicles to deliver such therapy. “They want us to help these patients, so we need to learn about this disease,” Beyer says.

Just how does diet affect symptoms? Much of that remains to be answered, according to Beyer, who says much of that research will come in time: “The whys and wherefores and hows are still to come in the research, but the foundation of that [first] research article on IC and diet is going to get us those answers—eventually.”

What Is the IC Diet?
Beyer encourages RDs to review the research that’s been published on IC and keep an eye out for new findings in the future. But for now, she says a few tools can help guide RDs when counseling IC patients on diet modification. The key is to work with each patient to determine what works best for him or her.

The first tool RDs should use is the previously mentioned list of top trigger foods and beverages that can cause IC symptoms. The foods most likely to produce problems for the majority of IC patients include coffee, most tea, most soda (particularly diet), most alcoholic beverages, citrus fruits and juices, cranberry juice, tomato products, soy, artificial sweeteners, hot peppers, and spicy foods.

When counseling new IC patients, Beyer suggests showing them this list and asking them to try eliminating as many of these foods as possible. “A lot of patients do very well just by doing that alone,” she says. “Try to keep it as simple as possible. Let’s not compound everything else that they’re going through by asking them to do too much too soon.”

For patients looking for more relief, Beyer and colleagues developed another, more comprehensive list in 2009, giving patients more specifics about the next steps to take in expanding their diet.

This list breaks down foods in to three categories: bladder friendly, try it, and caution. Bladder-friendly foods are the safest and least likely to cause a flare; foods in the try-it category have evidence of causing problems for some patients. This is the category that patients are encouraged to experiment with under the direction of an RD or other health care provider to determine which foods they can tolerate. Caution foods are best avoided entirely because they’re most known to cause flares. However, the bravest patients can experiment with caution foods in small portions.

Beyer says this list largely was based on emerging research and clinician and patient observations. “Most of us who were on that task force had dealt with thousands of IC patients over the years, so we had pretty good observations, and four of us actually have IC,” she says, which allowed the team to draw from a multitude of personal experiences as well.

Because of this, Beyer cautions dietitians against using this tool as a purely scientific document because it’s not. But that doesn’t mean it can’t be useful. “What I want to tell RDs is that this is the best we know right now,” she says. “And just because there isn’t any more in-depth research doesn’t mean that we still can’t help people [with what we know right now].”

In fact, while diet modification won’t solve all of an IC patient’s ills in one fell swoop, it can make a world of difference for many—giving hope back to patients who thought their pain wasn’t only invisible but unending.

The overall objectives of this list were to give patients a wider variety of foods to eat, ensure they were getting enough nutrition, and provide empowerment—“to give them a tool that they could use to add some control back into their life” by seeing which foods made them feel like their best self, Beyer says. She recommends dietitians who treat IC patients study this document well (visit www.ic-diet.com). And while an extensive review is beyond the scope of this article, Beyer recommends patients follow these key points regarding food and beverage consumption:

• Water: The question of whether patients can drink water isn’t easily answered. In most cases, water is well tolerated if patients take the time to determine which brand is best for them. “Water needs to be experimented with,” Beyer says. “Over the past 15 years, I’ve pretty much determined which bottled water I can drink in any area of the country I visit. So I know that when I go to the Northeast, I drink Poland Spring. When I go to Florida, I find the Zephyrhills water.” When in doubt, Beyer says she tolerates FIJI and Evian well.

She says chlorinated tap water and brands with added minerals, including DASABI and Smartwater, tend to cause problems, whereas well water does not. In general, if patients are having problems with the water they’re drinking, Beyer says this may be an area where dietitians can help guide them to a better option.

• Soft drinks: Clients who are having trouble giving up soda can drink root beer, which doesn’t have the high acid content of other sodas. When it comes to tea, chamomile and peppermint can be good substitutes for clients who miss drinking tea.

• Grains: For most IC patients, Beyer says grains generally aren’t a problem unless patients have celiac disease or nonceliac gluten sensitivity. (According to Beyer, roughly 14% of IC patients are believed to have a gluten sensitivity.) If that’s the case, RDs will need to consult additional lists specific to celiac disease and combine them to make a more complete list for patients, she says.

• Prepared foods: Beyer cautions patients about boxed mixes and pastas, noting that products such as Hamburger Helper contain MSG—a no-no for IC patients. The good news is that clients can re-create many of these items on their own with fresh ingredients, “and a lot of times they’re cheaper that way, too,” she says.

• Smoked meats and soy: In general, Beyer says IC patients shouldn’t eat cured or smoked meats and many soy products, noting that soy in particular has given 99% of her patients problems.

• Dairy: A welcome note for cheese lovers, Beyer says IC patients can tolerate most dairy products. She says many of her patients have noted that some types of dairy, such as cottage cheese or ice cream, even can be soothing when they’re experiencing a flare.

• Fruits: Next to beverages, Beyer says fruits can be one of the biggest challenges for IC patients, noting that when she was first diagnosed she could only tolerate pears and possibly blueberries. But she says this is a category that RDs should encourage patients to experiment with to see what works best for them.

• Vegetables: “Most vegetables, except for tomatoes and chili peppers, are fine,” says Beyer, who encourages patients to make their own soups, stews, and stocks vs. using prepared versions to avoid MSG.

IC Elimination Diet
Beyer says she’s confident IC patients can create a nutritious and well-balanced diet from just the bladder-friendly foods on the aforementioned list she and her colleagues developed. Following this list may be sufficient for patients who want to avoid experimenting with other foods and risking a flare. But many patients don’t want to live with such restrictions, she says, adding that many people may want to experiment with food in the try-it category to expand their diet, palate, and pleasure of food. “[In this case,] dietitians are in the best place to work with these patients through an elimination diet,” she says.

First, Beyer recommends getting baseline metrics for each patient. “For the first week, determine where that patient is, what they’re eating, what their voiding patterns are, and what their pain [level] is.” She suggests patients keep a diary to track voiding patterns, pain levels, and food intake. RDs can have patients develop a diary themselves or consult any number of online apps for help. For the sake of simplicity, Beyer recommends using an old-fashioned stenographer’s notebook with two columns so patients can write the food they’re eating on one side and their symptoms on the other. “Make sure they’re writing down how the food is prepared as well as any condiments or seasonings added to make it as complete as possible,” she says.

Second is what Beyer refers to as a wash-out period, which generally lasts two to three weeks. During this time, instruct patients to eat only foods from the bladder-friendly list—no challenge foods whatsoever. Patients should continue their diaries and stay in this period until their symptoms are at least somewhat relieved. “It could be months, but what we want to see is some change in those metrics,” she says. “If somebody is voiding 24 times a day and five times at night, and they go down to voiding 10 times a day and only twice at night, that’s an improvement.”

Third is the reintroduction phase, during which Beyer recommends introducing a new food every three days. For example, she recommends patients work from eating 2 inches of a banana on the first day to a whole banana on the third day. “What you’re going to get is some sort of a response to either the portion size or the frequency of a food,” she says. “Maybe a patient can have half a banana and be OK or a banana twice a week, just not every single day. These are the kinds of problem-solving skills that we want to help patients foster.”

In general, Beyer recommends patients devote time to an elimination diet or diet modification. Dietitians can help create meal plans or grocery lists based on their patients’ personal preferences and triggers. RDs also can help with ingredient substitutions. Beyer offers sample meal plans and grocery lists in her book for dietitians looking for guidance.

Which foods should RDs challenge first? Help patients decide this by reviewing what foods matter most to them and their individual circumstances—the foods that add the most flavor, such as garlic and onions; the foods they miss the most; or the foods with the most nutritional quality, such as blueberries, bananas, or almonds.

Counseling Tips
Beyer’s most important tip for counseling IC patients is to bring an understanding ear to their circumstances, even if you’re inclined to be irritated with a new patient’s multiple no-shows. “It’s important to note that most IC patients look perfectly fine on the outside yet are in incredible pain on the inside,” she says. “They may experience social and relationship challenges because they’re homebound and even may miss appointments because of their symptoms. If they call to cancel repeatedly, that’s probably when they need you the most.

“If you have people who are missing appointments, find some time to call them and offer phone consultations,” Beyer adds. “And reassure them that you’ll be there to help them when they’re ready.”

As a diagnosis of any chronic illness can feel like the death of a life a patient once knew before and will never have again, Beyer says it can be helpful for RDs to identify the stage of grief an IC patient is in, noting that patients can cycle in and out of the various stages in any order. “A patient may be in a state of acceptance but have a really bad flare and become very angry,” she explains.

Knowing what stage of grief patients are in can help determine how to counsel them. “For patients still in the denial stage, for example, acknowledge their pain and the unfairness of the situation but be understanding, express hope for improvement, and let them know that diet may be able to help them when they’re ready,” she says. “For patients in the bargaining phase, try to bargain back effectively, such as asking them to try one new thing or avoid just a few foods.”

The acceptance phase likely is the best time to involve patients in their treatment, according to Beyer, as they’re more likely to be open to distinguishing their personal trigger foods.

Beyer notes that most urologists aren’t used to referring patients to dietitians, so she says RDs need to be proactive in approaching these physicians, making them aware that “you’re knowledgeable of this disease and are available to help these patients.”

When Diet Isn’t Enough
While diet can help IC patients tremendously, dietary modifications alone are rarely enough, so Beyer recommends dietitians become familiar with other treatments and urge their patients to do the same. “Encourage patients to explore all options,” she says, adding that medication can sometimes help patients tolerate additional foods.

However and whenever you decide to add IC treatment to your counseling repertoire, Beyer recommends RDs learn all they can about this disease—and the sooner, the better. But it isn’t just patients who stand to benefit, she says, as treating IC patients has been rewarding for her both personally and professionally: “You can help people manage pain and other life-altering symptoms. You can help give patients hope for a new normal, and you can help people enjoy food again.”

— Juliann Schaeffer is a freelance writer and editor based in Alburtis, Pennsylvania, and a frequent contributor to Today’s Dietitian.