Sunday, December 2, 2018

How Desert Harvest Aloe Products Help Interstitial Cystitis

Desert Harvest was founded in 1993 to help a family member who was diagnosed with interstitial cystitis/painful bladder syndrome (IC/PBS). The goal was to find a natural product that would relieve her bladder pain, urinary urgency, and frequency.

The patented freeze dry process allows Desert Harvest to retain the maximum nutrients right after harvesting, while removing 100 percent of the water, insoluble fiber and the caustic latex chemicals called anthraquinones known to be irritating to the urinary and digestive tract. Unlike most aloe vera supplements and skincare, Desert Harvest retains the 75 vitamins, minerals, amino acids and polysaccharides to offer the highest quality and most effective products at affordable prices.  Desert Harvest Super-Strength Aloe Vera contains acemannan, a polysaccharide chain of mannose molecules, and glycosaminoglycans (GAGs) which adhere to the bladder mucosal lining to coat and protect it from irritants.  

Research Supports Use of Desert Harvest Aloe with IC/PBS Patients

In 1995, Desert Harvest conducted a Phase I double-blind, placebo-controlled clinical trial for the Super-Strength Aloe Vera Capsules which showed an 87.5% marked reduction in IC/PBS symptoms using 3600 mg (6 capsules) per day. In 2016 a survey of 20,000 Super-Strength Aloe Vera capsule users with IC/PBS helped collect additional data about dosage, effectiveness for varied IC symptoms, ramp up time to relief, as well as how to moderate dosage to best suit personal needs.

  • 92% of patients self-reported that they ‘experienced relief’ with concentrated oral aloe vera.
  • 67% of patients reported being able to reduce their medication levels
  • 63% of patients reported substantial (moderate or significant) improvement in urgency and frequency of urination 
  • 69% of patients reported substantial improvement in pelvic pain
  • 68% of patients reported substantial improvement in urethral burning

Super-Strength Aloe Vera works by coating the bladder to protect it from irritants. This can take anywhere from 2 weeks to 3 months at the recommended dosage of 3600 mg per day.  By taking 3 capsules in the a.m. and 3 capsules in the p.m. those surveyed reported the following:

  • 30% of patients saw benefits within the first two weeks
  • 56% of patients saw their improvement within the first month. 
  • 25% of patients saw improvement between 1 and 3 months. 
  • 18% did not respond within the first three months; of those, 12% eventually saw benefit from continuing the course of treatment.

 Desert Harvest Nutrition Products for Interstitial Cystitis Patients

Because those with IC/PBS are also challenged with diet restrictions, Desert Harvest formulates nutritional supplements and all-natural skin care that are IC/PBS friendly, gluten free, preservative free, starch free, non-GMO, and free of allergens.  Some notable Desert Harvest supplements that are IC friendly.
  • Desert Harvest Calcium Glycerophosphatefound in Prelief, has been proven to remove up to 95% of acid in foods.  Take one capsule prior to eating foods that can cause irritation or are known triggers.
  • Desert Harvest Probiotic, bifidobacterium infantis, helps fortify the digestive system and defends against imbalance that can contribute to gas, bloating, abdominal discomfort and diarrhea. One capsule per day can help with gastrointestinal conditions including IBS, ulcerative colitis (UC), leaky gut, constipation, chronic inflammation and bowel movement irregularity.
  • Desert Harvest Multi-Vitamin is a low acid supplement supplies a day’s recommended vitamins and minerals but is specifically formulated to be IC friendly. Some notable exceptions include:  
    • No B6 which many with IC are especially sensitive to
    • B9 from L-Methylfolate which is easy to digest, unlike folic acid
    • B12 from Methylcobalamin found in animal based foods and is naturally occurring rather than Cyanocobalamin, commonly used and chemically synthesized
    • Calcium Glycerophosphate that removes up to 95% of the acid in foods / drinks
    • Magnesium Oxide which supports calcium absorption, helps with chronic constipation and IBS
    • Buffered Vitamin C with 40 mg of calcium ascorbate for sensitivity

 Desert Harvest Products Can Ease Irritation "Down There"

Desert Harvest all-natural skincare also incorporates super-strength aloe in the highest concentration to take advantage of the anti-inflammatory, anti-viral, antibacterial, antiseptic and anaesthetic properties that make aloe a great topical for varied skin irritations. All skincare is paraben-free, petrochemical-free and has no artificial fragrance or preservatives.

Aloe Gele is made with 100% organic aloe vera, helps improve skin’s natural firmness and moisture. Ideal for burns, sunburn, acne, rosacea, eczema, psoriasis, vulvodynia, lichen sclerosus, Sjogren’s and as a soothing coating for the vulva and labia after multiple bathroom trips and wiping.

Aloe Glide® is a pH balanced personal lubricant made with 100% aloe vera with added all-natural ingredients to make is slippery and extra gentle for sensitive tissue. Recommended by healthcare practitioners for intimacy, vaginal dryness, menopause discomfort, physical therapy and vulvodynia.

Releveum® with 4% lidocaine, aloe vera, calendula and botanicals, is a patented formula for intense skin repair. It helps relieve pain associated with radiation dermatitis, chemical and kitchen burns, severe sunburn, shingles, psoriasis, vulvodynia, Sjogren’s lichen sclerosus, hemorrhoids, nerve pain and neuropathy. Helps improve healing time of wounds while preventing scarring and discoloration of tissue.

Desert Harvest Financial Assistance Programs

Desert Harvest works with organizations and healthcare professionals to help educate and advocate for all those with IC/PBS worldwide. By offering discounts for military, EMS, teachers, Medicare, Medicaid, SSI, they help defray costs for those on limited incomes.  Their Compassionate Assistance Program (CAP) offers qualified individuals free or discounted Super-Strength Aloe Vera and Reléveum® for up to one year at a time.   In addition to every day discounts, Desert Harvest’s semi-annual sales in July and December offer extra ways to save on top of volume savings and offered discounts.

To receive an additional discount on the Desert Harvest products mentioned, enter ICDiet10 when you check out. In addition to your discount, Desert Harvest provides a referral fee to Confident Choices which helps support my work with interstitial cystitis patients all over the world!

For more information and to try samples of Desert Harvest Super-Strength Aloe Vera capsules, Aloe Gele, Aloe Glide® or Releveum®, please visit or call 1-800-222-3901.

Related Posts:

Wednesday, September 13, 2017

How Interstitial Cystitis Affected My Allergies

I know it is easy to focus on all the stuff that is bad when you are diagnosed with a chronic illness, but there are often some positive changes that can happen as we make this journey. This time of year I am reminded that because of the hydroxyzine (Atarax) I take on a daily basis for interstitial cystitis (IC), I no longer have problems with the terrible allergies I suffered with my whole life. 

For example, I never could be around most animals. I love them, but being around cats in particular was a nightmare. My eyes would swell shut and I would cough and sneeze as though I had the worst cold or flu. I had a hard time visiting my family members who had cats and I know that strained relationships at that time. We had two "hypoallergenic" dogs as a part of our family for years (a poodle and a Bichon Frise), but never any cats.
Shortly after starting hydroxyzine, however, my daughter brought a kitten home from college. (That's a story for another day!) and we ended up with our first cat. I didn't think about it until much later, but she really didn't bother me. And then a couple of years later after we lost one of our dogs, we adopted our second kitten, Diego.

I also suffered from fall goldenrod allergies (hay fever) to the point of ending up in the urgent care and even ER year after year. I got more cortisone shots than I care to remember and the doctors had me on twice the recommended dose of allergy medications for years. Like with animals, I was miserable. My eyes and ears were also affected. I can remember a time in high school when my ears itched so badly I cried myself to sleep at night. I scratched my corneas twice because I was rubbing my eyes so much. And this misery doesn't come close to the embarrassment of starting school each year feeling like everyone around me was avoiding me like I had the plague.

How are allergies and interstitial cystitis related?

After I started hydroxyzine, however, I went through my first hay fever season and barely noticed because I was so focused on getting my painful bladder under control. But by the second fall, I realized I had no itchy ears, no swollen eyes, and I hadn't run to Costco for a case of tissue. It took me a bit to figure out the connection, but indeed, the antihistamine that was keeping the mast cells in my bladder under control was also extremely effective at controlling my other allergies. Considering all I had been through with my allergies, this was a fairly good trade off in my mind!

I know people reading this are at different stages of acceptance with this disease, and I want you to know I understand this is not an article to discount what you are feeling. But as you work through adjusting to your illness, hopefully the rest of you find a couple of lessons in this as well. Look for the silver linings. (I almost used the title of making lemonade out of lemons but you all would have called me out on that one.) There may be things that are actually enriching your life as you navigate this crazy business. Maybe you have more empathy for others than you used to. Maybe you are more motivated to get healthier in other ways. Maybe you have found different ways to attend to your family that are more intimate and deliberate than just going through the motions. Or maybe you can have cats in your home.

Let me know if you have some silver linings from being an IC patient. I would love to hear your positive stories.

Related Posts 

Author, Speaker, Patient Advocate

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

Thursday, February 2, 2017

Hope, Health, and Healing for Interstitial Cystitis/Painful Bladder Patients

I want to address this post to newly diagnosed interstitial cystitis/painful bladder patients. I know you are scared, tired, and are having a hard time figuring things out. I sense the hours you are spending on the internet searching for nuggets of truth among the thousands, maybe millions of pages and social media accounts dedicated to this fickle and frustrating disease you are now faced with. I hear the whispers of hopelessness. I get it. I was there too. And even as a medical professional, a dietitian, I was just as baffled as you about what was happening to me back in 1998.

So, I thought I would take a moment to tell you about what I do here. Maybe you are like most patients who figure out, often before they are diagnosed, that some foods trigger their symptoms. (Me? I kept saying, “I think my bladder is allergic to tomato sauce!”) To add to the collective chaos of the IC community, this "bad food list" often varies person to person.

Now, in dietitian language, we know this type of food intolerance shows up in a variety of health conditions and we use an elimination diet to help walk patients through the process of figuring out their own personal trigger foods. With IC, of course, we don’t have to start with plain chicken and green beans because we know there is a core group of foods that affect most IC patients―the "top ten trigger foods.” Keep in mind, interstitial cystitis is not taught in dietetics and nutrition programs, so in the beginning, I had to figure things out for myself too. And, after feeling like I would never be out of pain or get my life back, I gradually felt better.

Then patients and leaders in the IC community begged me, literally begged me to "write the book" about IC and diet. So I dug in, way past my comfort zone, took some self-publishing classes, and with the guidance and discipline developed writing about IC/painful bladder syndrome in graduate school, I eventually came up with Customizing the Interstitial Cystitis Diet: A Confident Choices® Book and Confident Choices®: A Cookbook for IC and OAB. These books are the foundation of my business. For most patients, I think these books are all you need to get motivated to adapt your diet to your condition. For those who need more help (such as people with multiple health conditions that require dietary intervention) I do phone and video consultations.

Eventually, in a spark of inspiration, I developed the tag line―the mantra and mission statement for my work with interstitial cystitis patients. “Hope, Health, and Healing” became my guiding principle as I expanded my work into more books and social media. It was important to me to tell you and others that it isn’t hopeless. You can be healthy. And I believe healing is possible.

Finally, I ask those of you who have worked with me to share your stories in the comments either here on or Facebook. Let’s help these new IC brothers and sisters of ours get through these horrible first days by sharing our wisdom and encouragement. Share your success stories. Let’s show them that they are not alone!

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Painful Bladder Ten Simple Things to Feel Better Now      

Author, Speaker, Patient Advocate

You CAN Feel Better! Just Take It a Step at a Time   

 For step by step guidance for creating your own personal interstitial cystitis meal plan, see: ConfidentChoices®: Customizing the Interstitial Cystitis Diet.


For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®:A Cookbook for Interstitial Cystitis and Overactive Bladder

Wednesday, February 1, 2017

Set It and Forget It. Slow Cooker Meals for Sensitive Bladders

The concept is simple. Throw meat and some vegetables into a slow cooker, add some seasoning, and let it simmer all day. After a few hours you and your family have a complete, home-cooked meal, with minimal effort and maximum flavor. What could be better than that?

Of course, the benefits of using a slow cooker transcend the ease of preparation. Most modern cookers not only use less energy than conventional methods of preparing meals, but also are easier to clean. (For the “cleanest” cooking option, try using slow cooker liners.) Meats prepared in a slow cooker are naturally tenderized by the gradual cooking process allowing you to use cheaper and tougher cuts of meat. And finally, vegetables used in slow cooker recipes retain their nutrients better than boiling in water where the vitamins and minerals can be destroyed by the higher temperatures and lost in the water itself. 

But what if your favorite slow cooker recipes have ingredients like tomatoes and barbeque sauce that are less than bladder friendly? Remember, the beauty of having home-cooked meals is your ability to control what is added to the mix. The simplest meals made with fresh ingredients are of course the best. Beef or pork roasts combined with potatoes, carrots, celery, and onion with a little salt and pepper (if tolerated) is the most basic slow cooker recipe. But the versatility of a slow cooker also includes an endless array of casserole, stew, soup and even dessert recipes. 

Slow Cooker Food Safety and the “Danger Zone”

Keep in mind, the same low temperature environment that allows us to use slow cookers to prepare tender, flavorful meals over the course of a day may require some tweaking of your cooking skills to keep it safe. It is important to minimize the time the food spends in the temperature “danger zone” (40°F to 140°F) where bacteria multiples the fastest. Here are some suggestions:

  • Frozen meat can compromise the ability of the cooker to move quickly through the danger zone. Thaw frozen meat in the refrigerator overnight before using it in a slow cooker.
  • Minimize the time your meal spends in the food safely danger zone by preheating the cooker and heating liquids before you add them to the crock.
  • To prevent vegetables like peas, zucchini, and corn from becoming mushy, many people like to add them in the last hour of cooking. To keep the mixture’s temperature from dipping too far into the danger zone, heat cold or frozen ingredients first before adding to the hot mixture in the slow cooker.
  • If using dried beans such as kidney beans, reconstitute and boil on the stove according to package directions before adding to your slow cooker meal. Boiling beans beforehand not only speeds up cooking, but more importantly, it releases the toxins that can become trapped by a slow cooker’s closed environment.
  • Avoid lifting the lid of the slow cooker when in use. This can lower the temperature significantly and increase the time to finish the meal.
  • If you want to use an acid reducer like AcidZap to help make the meal more bladder friendly, add it at the end, preferably to individual servings. A slightly acidic environment when cooking can help control food borne illness and works with the heat to tenderize meats.
  • Resist the temptation to taste-test until everything has reached a safe temperature. Although the mixture may appear to be boiling, the inside of larger pieces of meat may not be safe until the very end. Use a meat thermometer in the thickest part of the meat to determine temperature. Whole roasts should have a temperature of 145°F to 160°F, poultry, soups, and stews should be 165°F.
  • After your meal, remove any leftovers from the crock and refrigerate immediately in a shallow pan to allow speedy cooling. Do not leave leftovers on the counter to cool.
For more information on slow cookers and food safety, see the USDA website.

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate 


Slow Cooker Roast Beef Dinner

  • 3 to 4 pound beef roast, visible fat trimmed
  • 4 medium potatoes, peeled and halved (can substitute sweet potatoes)
  • 3 carrots, peeled and cut into 2-inch pieces
  • 2 stalks of celery, cut into 1/2-inch pieces
  • 1 medium onion, quartered, if tolerated
  • 1/2 cup boiling water
  • 1 tablespoon minced garlic
  • 1 teaspoon salt
  • 1/2 teaspoon pepper, if tolerated
  • 2 teaspoon dried basil

It doesn’t get any easier than this!  Layer roast and vegetables in a 3 to 5 quart slow cooker.  Add water. Sprinkle in garlic, salt, pepper, and basil. Cook on medium for 6 to 8 hours or on high for 4 to 6 hours. Temperature of roast at its center should be a minimum of 145°F.

Chicken Dinner: Substitute 5 to 7 skinned chicken breasts or thighs for beef. Substitute rosemary for basil.
Turkey Dinner: Substitute 4 to 5 pound turkey breast for beef. Substitute poultry seasoning for basil.
Beef Stew: Cup roast into 1-1/2 inch cubes. Increase water to 1-1/2 c. One hour before serving:  Mix 2 T. flour with 1/2 c. warm water; stir until smooth. Stir gently into stew. Continue cooking for at least an hour.

Slow Cooker Chicken Noodle Soup

  • 3 boneless, skinless chicken breasts
  • 4 medium carrots, peeled and sliced into coins
  • 3 stalks celery, cut into small, bite-sized pieces
  • 1 medium sweet onion, diced
  • 3 to 4 cloves garlic, minced
  • 2 tablespoons butter or olive oil
  • 1 teaspoon poultry seasoning (MSG-free)
  • 6 cups MSG free chicken broth (Swanson’s is available almost everywhere)
  • ½ teaspoon of salt
  • ¼ teaspoon of black pepper (if tolerated)
  • 1 ½ cup cooked eggs noodles (I like Marie Callender’s brand found in the freezer section)


Add whole chicken breasts to pre-heated, 5 to 6 quart slow cooker. Add carrots, celery, onion, garlic, broth, and seasonings. Cover and cook on low heat for 6 to 8 hours or until  chicken breasts reach an internal temperature of 165 degrees F. Remove chicken breasts. Chop into bite sized pieces and return to soup mixture. Add cooked noodles. Cook for an additional 30 minutes. Serve hot.

Slow Cooker Pumpkin Pudding

  • 1 - 15 ounce can solid pack pumpkin
  • 1 - 12 ounce can evaporated milk (may use fat-free)
  • 3⁄4  cup sugar
  • 1⁄2  cup biscuit baking mix such as Bisquick
  • 2 eggs, beaten
  • 2 tablespoons melted butter or margarine
  • 2 1⁄2 teaspoons pumpkin pie spice
  • 2 teaspoons vanilla
  • Whipped topping or vanilla ice cream (optional)


Mix pumpkin, milk, sugar, baking mix, eggs, butter, spice, and vanilla in a large bowl until well blended. Put mixture into a 3 quarter or larger slow cooker. Cover and cook on low temperature (not warm) for 7 hours. Serve with whipped cream or ice cream as garnish. 

Slow Cooker Pear-Apple Sauce

  • 3 large apples (peeled, cored, and cut into slices)
  • 3 large pears (peeled, cored, and cut into slices)
  • 2 teaspoons ground cinnamon
  • ½ teaspoon ground cloves
  • 1 teaspoon lemon juice (optional)
  • ⅓ cup water
  • ¼ teaspoon salt


Combine all the ingredients in slow cooker, and put the top on. Cook mixture on high for 4 hours, stirring twice during cooking. The pear-applesauce will be slightly chunky. For a smoother sauce, use blender or immersion blender to puree. Serve warm or cool sauce and store in the refrigerator for up to five days. May be frozen.

Wednesday, September 28, 2016

IC Diet: Should You Be Pro-Probiotics?

It doesn’t take much research on good ol' Dr. Google to find people recommending probiotic-laced foods or supplements for a variety of health conditions including interstitial cystitis/bladder pain syndrome. By now, many of us have heard of these supplements that are supposed to replenish the good bacteria of the “gut” (the layperson’s term for the organs of the gastrointestinal system), but what exactly does that mean, who might benefit from them, and is there one food or brand of supplement that is better? What about someone who may have taken boatloads of antibiotics like a person with IC/BPS? Should they take more or less probiotics?

Part of what complicates the understanding of this subject is that the science of intestinal bacteria colonies (the microbiome) and its relationship to conditions like painful bladders is still evolving and is so new that even the most reliable sources of information are either a bit sketchy or they are changing their position frequently. In short, what you read about probiotics today may not be the same information you find tomorrow. Yet, we do have a baseline of knowledge about the microbiome that is important to understand. Scientists tell us that our bodies are comprised of more bacteria cells than human cells. Now, many of you are thinking, how is that possible? Wouldn’t we die? Aren’t bacteria bad? Well, the answer is more complex than that.

The “Bad” Bacteria

We DO know that bacteria like e. coli, c. difficile, bacillus, and salmonella can cause food poisoning as well as bowel, bladder and kidney infections, even death. We DO know that streptococcus pyogenes (strep) can cause skin infections and pneumonia, even death. And we DO know that infamous sexually transmitted bacteria like gonorrhea and syphilis can cause sterility, insanity, and yes…even death.

Why do I keep emphasizing death? Because you may not even realize it, but death by bacterial infection was actually common a hundred years ago. People even died from urinary tract infections. Yet, how often do we hear of people dying of bacterial infections today? Very, very rarely. Because in a fairly short period of time, scientists and doctors found ways to prevent the spread of bacteria through hand washing, sterilization of instruments, and the use of antibacterial products like bleach, alcohol, and Lysol; and others eventually discovered ways to fight the bacteria once it invaded the body―antibiotics of various sorts. So yes, all of this is good, really good for the most part…except…we also seem to have created a new set of problems, unintended consequences, with all of this focus on cleanliness and “cures.”

The “Good” Bacteria

You see, frequent use of those “lifesaving” antibiotics also seems to wipe out or alter the colonies of good bacteria we have in our body. Think of it this way. When you take certain antibiotics, you may be forcing many of the good bacteria to leave the neighborhood (the colonies they form on the intestinal lining) allowing space for other “bad” bacteria (primarily e. coli and c. difficile) to “move” in and take their place. This is even more tragic when you consider many people with painful bladders were treated as though they had an infection when really they had interstitial cystitis.

Yet, the good bacteria serve a multitude of important functions in our body, and likely provide many more benefits than we even know about at this time. For example, we know that good bacteria in the body, primarily in the intestinal tract, help break down food into smaller packages of nutrients the body can use. We know that good bacteria can aid the immune system and keep other organisms like bad bacteria and yeast from overwhelming our systems. The good bacteria may even play a role in weight management by producing a hormone which triggers satiety in the host (you!). Finally, it is theorized that disruption of the intestinal bacteria can also alter the permeability of the intestinal wall, allowing elements past the protective layer of cells deeper into the structure of the organs, potentially causing inflammatory reactions and disease. Because of all of these functions, a disruption of intestinal bacterial colonies has been linked not only to gastrointestinal diseases like inflammatory bowel disease, but also c. difficile and yeast infections, diabetes, and obesity.

Recent research into interstitial cystitis (and others) have found that patients are lacking in important beneficial bacteria. Known as the DIPP Mystery, these bacteria play important roles in the health of the cells lining our gut. Additional studies are being conducted to determine if men with chronic prostatitis also have similar deficiencies. Why this has occurred is a mystery though a strong contender is the long term exposure to antibiotics over our lifetimes. Learn more about the DIPP Mystery here! 

Establishing and Maintaining the Body’s Bacterial Balance

Certainly, all of that anti-bacteria warfare was and still is important. We definitely don’t want to go back to the days when people died just because they cut their finger while carving meat or they had a baby. We certainly don’t want children to lose their hearing because of repeat damage to their ears by bad bacterial infections. So what can we do to respect and maintain the microbiome (friendly bacterial colonies) that co-exists in our bodies?
  1. Consume plenty of fruit, vegetables, and high fiber foods. Don’t be too concerned if there are fruits you cannot eat. Most painful bladder patients can eat a wide enough variety of fruits and vegetables to supply their bodies (and their microbiome) with plenty of vitamins, minerals, and carbohydrates to get the job done.
  2. Consume some fermented foods. Fermented foods provide and stimulate the growth of friendly bacteria. This can be hard for some people with interstitial cystitis since many fermented foods like sauerkraut, kimchi, and soy-based foods like tempeh are almost always hard on an IC bladder. Other fermented and cultured foods like yogurt and kefir may be less problematic. As a bladder patient you may be hesitant to try yogurt or kefir; however, with all of the varieties and flavors available, you are likely to find one or two that suit you. Look for labels that say “active cultures.” Some yogurts and even cheeses are fortified with additional cultures. Read the labels and only avoid the foods that affect YOUR bladder. A true IC diet is an individualized diet.
  3. Only take antibiotics when you absolutely need to. That doesn’t mean you shouldn’t go to the doctor if you think you have a urinary tract or sinus infection. Rather, don’t just take random antibiotics until the clinician has evaluated your culture to determine the exact medication you need. (A bladder analgesic like phenazopyridine―found in medications like AZO Standard―can help you get through the day or so of waiting to see if you have a UTI.) Consider this: many IC patients have taken multiple courses of unneeded antibiotics in the history of their disease, before someone figured out that they really didn’t have an infection; so let’s not add to that history that may have made your intestines and microbiome fragile.
  4. If you need antibiotics, complete the course following the physician’s directions. If you are supposed to take it three times a day, do it. If you are supposed to take it for seven days but you start to feel better on day four, keep taking it until it is gone. The prescription is regulated to help you fight the bad bacteria in the most effective manner. Is it still killing good bacteria? Most likely yes…but without the whole prescription, you risk allowing the strongest of the bad bacteria to survive, setting you up for resistant infections in the future. The last thing a person with IC needs is a deeply imbedded, resistant infection!
  5. Ask your physician about taking probiotic supplements. Many IC patients have added probiotics to their treatment plans. Today probiotics are not only found in health food stores, but also at pharmacies and big box stores like Costco and Walmart. Common commercial brands include Culturelle, Align, and TruBiotics. JAVAcid, an acid reducer, also contains important pro and prebiotics!
Will taking a probiotic cure a disease like interstitial cystitis or modify its symptoms? The science is still being explored. Since we are only now beginning to identify the over 500 strains of bacteria that co-exist in the microbiome of our bodies, it is likely that different conditions may require different probiotic supplements. As we often say in nutrition science, “Stay tuned!”

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate 


     Culturelle Probiotics    Align Probiotics

Just Tell Me What to Eat!

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators 

Sunday, September 25, 2016

The Mental Gymnastics of Chronic Illness: Why Me?

Let's face it. Everyone with interstitial cystitis or other chronic disease has asked the question. We wonder if antibiotics or gluten or too much sugar have caused our painful bladders. Or we blame our diagnosis of interstitial cystitis on an abdominal surgery. Or we try to pinpoint our diagnosis to a major stressful event. Of course, we don't just throw guesses around about ourselves; this fascination with why people get sick often extends to others: "Did you hear Peggy has breast cancer? It must be all of that coffee she drinks." Or just as likely, "Can you believe that Mike has diabetes? But he is so healthy! He always eats well and he just ran a marathon last fall!" Honestly, a sick person can never win the blame game!

When Healthy People Get Sick

Let's use my friends as an example. Most people I know live very healthy lifestyles, yet even among my dietitian colleagues, two are fighting breast cancer, one was just diagnosed with celiac disease, and another discovered she had multiple sclerosis a few years ago. These people are long distance hikers, marathon runners, yoga instructors, and even vegans. And me? I have always eaten healthy, was a normal weight, and walked four miles each day until I was diagnosed with IC and later with a genetic form of heart disease. From a cause and effect perspective this is perplexing, so we ponder and propose, fret and fume....why me? How did I get this sick?

Well, I am here to remind you (as I have to do myself!) that even if there are some possible triggers for many diseases or genetic predispositions to others, the fact remains that the causes of chronic disease like interstitial cystitis and illnesses like cancer and celiac disease are often a mystery even to doctors. In most cases, you didn't do anything to "cause" your body to "rebel." There are many complex factors that play into whether a person gets sick or many factors that even if you think you "know" why you got sick, it is probably an overly simplistic explanation.

I have heard people say, "I drank a lot of coffee, so I got IC." Maybe....but there are also a lot of people in the world who drink a lot of coffee who do not get interstitial cystitis. And although many IC patients describe their illness developing after a particularly stressful event like a divorce or building a house, others go through those situations and don't end up with painful bladders for the rest of their lives. That is just life.....and so is getting sick. So although there are those rare human beings like my husband's Grandma Grace, who made it to 93 without any serious illness in her life, most people get "something" eventually. IC is just our "thing."

So how is a person with chronic illness supposed to sort all of this out? Maybe we don't. Maybe instead of spending hours every day trying to get to the bottom of "why," we leave that question for the scientists to debate and we concentrate on getting better. We eat as many fruits and vegetables as we can to get natural sources of vitamins, minerals, and antioxidants. We choose high quality, lean proteins to help our bodies heal and strengthen our immune system. We consume a modest amount of healthy fats from olive oil and fish each day. We practice stress management techniques like meditation and taking deep breaths. And, of course, we move our bodies more. We take an active role in doing healthy things to make our bodies as strong as possible. What about you? What are you doing to foster a sense of wellness despite having a chronic illness?

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate  

Related Links:


Helping Yourself Is the First Step to Getting Well

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators

Friday, August 12, 2016

How Did I Become an Interstitial Cystitis Diet "Expert?" Well Let Me Tell You!

You know, sometimes you get smart about stuff you never wanted to be smart about and that is what happened to me. In the mid-1990s, I was working as an outpatient hospital dietitian when I saw my first IC patients. Besides wondering how in the world I could help them with this frustrating disease, I was also thinking, “Boy, their symptoms sound like mine!” See, I had been struggling with “bladder infections” and painful urination for years, yet test did not show bacteria in the urine.

I tried everything―avoiding baths, drinking gallons of cranberry juice (you too?), and taking boatloads of antibiotics. I saw several doctors and began to think I was going crazy. My symptoms were getting worse and worse over time and I was beginning to suspect that I had something worse than an everyday urinary tract infection (UTI).

From Denial to Healing to Helping Others

Fast forward to 1998, when I found a great interstitial cystitis doctor, and I began my journey to get well. Although there wasn’t any research to support the idea that diet could make a difference in interstitial cystitis patients, I joined the Interstitial Cystitis Network’s Patient Support Forum and “met” thousands of people with IC who were experimenting with diet modification with great results. I tried eliminating the top ten foods and felt immensely better. I started helping people online and over the phone and eventually, wrote my first book for bladder pain patients, Confident Choices®: Customizing the Interstitial Cystitis Diet in 2005.

In addition to that first book, which was updated in 2010, I also answered the call of patients and published Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder, a fingertip ready guide to over 200 bladder friendly recipes, and Interstitial Cystitis: A Guide for Nutrition Educators, giving dietitians, nurses, and other health care professionals the information they need to help interstitial cystitis patients make confident dietary choices.

To be honest, the journey hasn't been too bad. Although I wish I didn’t have IC, I never would have met the amazing people I have over the past 20 years, nor would my career have gone in the direction of publishing books, writing for national publications, and speaking around the country to patients and nutrition professionals without it. I certainly never thought I would I find myself among a small number of nutrition experts in the United States who know how to help interstitial cystitis patients using diet to control the symptoms of this painful bladder condition.

More than anything, I am just like you. I know the frustration of having more education about my disease than the medical professionals I try to get help from. I understand balancing my dietary restrictions with the wants and needs of my family. I have felt the fatigue and anxiety of standing in a grocery store wondering what I can eat. And I have experienced the emotional ups and downs as I navigated the fickleness of having a painful bladder that interjects itself in every corner of my life. I not only have the science and experience, I have the empathy and understanding to help you and other people with interstitial cystitis navigate the path to healing.

To learn more about my journey, see My IC Story. What is your story?

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate