My IC Story

Many people want to know my story, but to be honest, I have a hard time telling it still today, since it is easy to fall back into blaming myself for not getting diagnosed earlier. What I have to remember is that I didn't have the internet to research things and communicate with other patients around the world as we all can today. Anyway, here it is--raw and embarrassing as it may be:

I believe I have had IC since I was a teenager, but it took until I was 38 to be diagnosed. As a high school student I didn't understand why there was only 5 minutes between classes. Didn't everyone have to use the bathroom between classes? Honestly, I never thought I was different than anyone else. When I had my first "UTI" at 17, it never entered my mind that I could have been misdiagnosed. I was more embarrassed to have to talk to someone about what was going on “down there.”

One day, as a sophomore in college during an extraordinarily stressful time I went to the bathroom and filled the bowl with bright, bloody urine. I was panicked...went to the doctor later that day and by then, there wasn't anything was in my urine. They gave me antibiotics anyway, but I still felt like a fraud. At 19 I learned to keep this sort of thing to myself. (Now I know stress plays a huge role in my IC.)

When I got married, I ended up with "repeat UTIs" and the university clinic referred me to my first urologist. He completely mortified me when he called it "honeymoon cystitis" and then went on to say, "This sort of thing happens to you girls when you start to have sex with multiple partners." I was so paralyzed with embarrassment I couldn't even remind him that I was married--couldn't he see my rings? Didn't he read my chart? Again, I clammed up and didn't say anything for a long time.

Over the next 15 years I jumped from doctor to doctor, urgent care to urgent care every time I had a "UTI," partly because we moved a lot in those early years, but partly because I just couldn't risk the chance that I would be blamed in some way for something that I knew wasn't my fault. I was not assertive enough to stand up for myself--yet. Maybe if I hadn't done that, I would have been diagnosed sooner.

Finally, at about age 35 things got out of control, and I became nearly bedridden for two years. My kids were in junior high and high school age and it took all of my energy to get up in morning, do a couple of chores, work part-time and put dinner together. Often one or another thing got pushed aside because I was so sick and exhausted. My once organized home became a cluttered mess. My biggest grief was that I wasn't able to be the kind of mom I had been in the past. I couldn't get up early enough to make breakfast for my kids when they were in high school, I rarely volunteered at school anymore, and I had to say no way, way too often. I do have to say this, I made sure that I was always at "events" like ball games or concerts or ceremonies.

About that time, my family doctor, who is magnificent, started to suspect IC, and sent me to a urological clinic. Although my family doctor was on the right track, I got stuck with a urologist who "didn't believe in IC." At one point he blamed my husband for "giving" me something-what a mess. I was also put on long-term antibiotics, given anti-depressants (which, because I wasn't depressed, completely flipped my brain out), and subjected to urethral dilations. (I know now it probably made me worse).

The last straw came when I called my boss at 10 pm one night to tell him I couldn't open the office the following day. He was furious, even though I had never missed work. I calmly reminded him of all the extra time I put in the previous year when another dietitian's father was in the hospital for several months. He wouldn't hear of it. I had no choice but to quit on the spot. The good news was that I finally had stood up for myself, and the next day was when I began to really get help.

That morning, I camped out on the steps of the urologist's office before they opened. His nurses and assistants got there before him and hustled me into the office. Two or three of them got busy on the copiers, and another one told me "You are in the wrong place. This doctor cannot help you. Go to your gynecologist, rule out anything there, then if you need a urologist go see Dr. ****, he is the best for IC in Michigan." She gave me the new doctor's phone number, and the others handed me a stack of my records still warm from the copier. I left stunned, but stronger.

Today I am FOREVER grateful for those brave women who had the guts to tell me what their boss would not. No offense to the male IC patients out there, but I should have known months before that I was seeing the wrong urologist when week after week I was the only female patient in the waiting room. Doctors who really know IC usually have a fair amount of IC patients mixed in with the vasectomy and prostate patients. :-)

The rest of my story is uneventful, except that it still took another year of tests and doctor appointments to get the true diagnosis, and still another few years to get me on track with the right medications and lifestyle changes. As I say in my books, even as a dietitian, I was very much in denial about the interaction of food with my symptoms for a long time, but eventually I was able to add a lot of foods and certain beverages back into my diet.

In some ways I think IC changed me in very positive ways. I am much more assertive and don't take bad medical care lightly for my family or me anymore. I have learned to cherish and enjoy the time that I feel good. I probably accomplish much more these days because I don't waste time on meaningless activities.

I also prioritize the people in my life better than I ever did. I practice stress management, make sure I get plenty of sleep, and I don't waste my time with people who don't understand my illness. These "toxic" people can drain all the energy out of you and actually make you sicker. I DO spend a lot of time with my family, and try to never take that for granted. I have to say, that without exception, my kids survived their teen years of having a "sick" mommy, and they are all amazing, compassionate, loving adults.

Finally, whether this is a road I would have chosen or not, I believe now I got sick for a reason; that since I have the unique experience of knowing food and IC, I am able to help thousands of other people who do not know where to begin with the puzzle of the IC Diet. I have visited IC support groups all over the country now, and have counseled people from Maine to California on the IC Diet. Frankly, I wrote the books because I couldn't be everywhere at once, and although some people couldn't afford my consultation fees, most could afford a paperback book.

Thanks for letting me share my story with you. It is interesting how so many elements of my story parallel other IC patients. Maybe someday we will be able to streamline the diagnostic process, and fine-tune the treatments available. Until then, we have to lean on and learn from each other.


Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

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 

 **Please SHARE using the links below!**

Interstitial Cystitis Diet Safe: Yummy Chicken Corn Chowder

Looking for a quick, bladder friendly meal or side? This savory chicken corn chowder is full of flavor and nutrition! Serve with fresh bread or rolls and a small bowl of fruit for a complete meal.

Savory Chicken Corn Chowder

From Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

Ingredients

• 2 T. butter
• 2 T. flour
• 4 c. skim or low-fat milk (may substitute two, 12 ounce cans evaporated skim milk)
• 1 cup cubed, cooked chicken
• 1 can (15 to 16 oz.) bi-color corn
• 1/4 c. finely chopped red bell pepper (reserve some for garnish if desired)
• 1 large potato, peeled and cubed
• 1 T. MSG free chicken base or boullion
• 1 t. salt
• 1/2 t. thyme
• 1/4 t. pepper, if tolerated
• chopped green onion for garnish

Melt butter over low to medium heat in 1 qt sauce pan. Whisk in flour being careful not to burn mixture. Slowly add milk, continuing to whisk until entire mixture thickens.

While still heating, add chicken, can of corn (including liquid), pepper, cubed potato, salt and pepper.

While continuously stirring, bring mixture to simmer. Continue to stir and simmer mixture 10 to 12 minutes, or until potatoes are cooked. Serve hot, garnish with chopped green onion and green onion.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com

For more recipes:

               

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

How Inflammatory Disease like Interstitial Cystitis Causes Fatigue

New animal research may indicate how certain diseases make people feel so tired and listless. Although the brain is usually isolated from the immune system, the study suggests that certain behavioral changes suffered by those with chronic inflammatory diseases are caused by the infiltration of immune cells into the brain. The findings suggest possible new treatment avenues to improve patients' quality of life.

Chronic inflammatory diseases, like rheumatoid arthritis, inflammatory bowel disease, psoriasis, and liver disease, cause sickness behaviors, including fatigue, malaise, and loss of social interest. However, it has been unclear how inflammation in other organs in the body can impact the brain and behavior. The researchers found that in mice with inflamed livers, white blood cells called monocytes infiltrated the brain. These findings support previous research demonstrating the presence of immune cells in the brain following organ inflammation, challenging the long-held belief that the blood-brain barrier prevents immune cells from accessing the brain.

Using an experimental model of liver inflammation, our group has demonstrated for the first time the existence of a novel communication pathway between the inflamed liver and the brain,' said the study's senior author Mark Swain, MD, Professor of Medicine at the Un iversity of Calgary. Swain and his colleagues found that liver inflammation triggered brain cells called microglia to produce CCL2, a chemical that attracts monocytes. When the researchers blocked CCL2 signaling, monocytes did not enter the brain despite ongoing inflammation in the liver.
Liver inflammation also stimulated cells in the blood to make an immune chemical (TNFα). When the researchers blocked the signaling of this immune chemical, microglia produced less CCL2, and monocytes stayed out of the brain.

In the mice with inflamed livers, preventing the entry of monocytes into the brain reduced sickness behaviors; mice showed more mobility and social interaction. These findings suggest that people with chronic inflammatory diseases may benefit from treatments that limit monocyte access to the brain. "Sickness behavior significantly impacts quality of life. Our findings further our understanding and may generate potential new avenues for treatment of these often crippling symptoms," said Swain.

'The brain is the master coordinator of many of our bodies' defense responses, so it must be able to sense injury and inflammation in distant body organs. This study starts to explain the peripheral communication signals that activate the brain," said Nancy Rothwell, PhD, DSc, at the University of Manchester, an expert on brain inflammation who is unaffiliated with the study.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

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

The Fickle Nature of Interstitial Cystitis

Do you sometimes react much more severely to certain foods than at other times (tomato-based foods and citrus). How can you know when those more severe reactions might happen?

What you are experiencing is quite common in people who have mild to moderate forms of IC. Sometimes the food and beverages that we consume at the same time as a trigger food will moderate the latter’s effect on the bladder. For example, a person may find that they can eat a small piece of lemon meringue pie because the egg whites in the meringue will temper the acid from the lemon filling.

Other people find that food will bother them in one form and not another. You may be able to tolerate one slice of tomato on a hamburger, but not a cup of tomato sauce on spaghetti. Finally, many other things can affect IC bladder symptoms. Fluctuating hormones, stress, disrupted sleep, allergy flares, and other illnesses may amplify an IC patient’s pain and frequency, giving the impression that something s/he ate is the culprit.

I suggest that all IC patients keep a basic food intake and symptom diary. A stenographer’s notebook with the line down the middle is good for this. You can record your food intake in the left hand column and note your symptoms on the right. Don’t forget to track the other things mentioned your periods, stressful events, allergy flares, etc. You should be able to notice some patterns after several weeks of journaling. It is also a great idea to share your food/symptom diary with your urologist, dietitian, or other healthcare professional who is working with you to help to manage your IC symptoms. Sometimes a new set of eyes can see things that we miss! If you need help determining what is flaring your symptoms, you might consider individual counseling. 

 

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

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

Interstitial Cystitis: When Will a Food Affect Me?

A common question asked by my interstitial cystitis patients is, “How long from mouth to bladder?” The answer is unfortunately vague. It depends on the person and the food. Some foods, like cranberry juice, will likely cause an IC flare within an hour. Other foods might not cause a reaction in small doses, but you could experience bladder pain or other symptoms when you increase the portion size. Some IC patients will experience an increase in bladder symptoms right before bedtime and others report a day or two lag between eating a food and the development of bladder pain. In most cases, however, if you are going to experience symptoms with a particular food, it will most likely happen within hours.

Keeping an interstitial cystitis food and symptom diary can help you figure out how certain foods affect your IC symptoms. You can download sample diaries at Recipes and Resources.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

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

Determining YOUR Personal IC Trigger Foods

If you have been diagnosed with a chronic illness like interstitial cystitis, you may feel as though all of the decisions about your life have been placed in someone else’s hands. Yet, dietary modification is entirely within your control and can be one of the most successful ways to manage painful bladder symptoms.

You probably already suspect that certain foods trigger their symptoms. For most IC patients, the worst offenders are tomatoes, cranberry juice, citrus fruits, soy, coffee, tea, chocolate, alcohol, and various spices and food additives. Other foods may bother an painful bladder as well, depending on the individual and the current condition of their bladder. The most important thing, therefore, is to determine your own personal trigger foods. Although this three-stage process may seem cumbersome, most patients find the results extremely valuable, especially if they find they can eat more foods than originally thought.

In the first stage of the elimination diet for interstitial cystitis, you need to keep a detailed food and symptoms diary. It is important to get a baseline of the foods consumed as well as the symptoms. You may also include things like daily stressors, sexual intercourse, unusual physical exertion, and any medication changes they may have. During the second phase, you will begin a wash-out period of one or more weeks, consuming only those foods considered “bladder friendly” until your symptoms diminish. (For complete IC Food List see the IC Food List.)

The third phase of the elimination diet for IC is the "challenge" phase. Here, you will test one food at a time to see if you have a bladder reaction. I suggest consuming a small amount of food on one day, increasing the portion size the second, and if you haven’t experienced symptoms, try a full serving on the third day. This way you can test both the food and portion size. For example, you may be able to eat half of a banana two times a week, but a banana a day may cause you to flare. This process should be repeated until the you have created a personalized Bladder Friendly list of foods.


Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

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

Redefining “Elimination Diet” for the IC Diet

Are you an interstitial cystitis patient? What was your reaction when you first heard the phrase “elimination diet?” Many IC patients are confused and intimidated by the thought of doing something that sounds so drastic. My first experience with an elimination diet was when my daughter was two years old. Her skin was raw from eczema, so the pediatrician suggested doing an elimination diet to help determine if she had food allergies. Now, the first phase of a traditional allergy elimination diet is quite severe. She started out on lamb, pears, and rice. It was miserable for both of us. It was complicated to find foods a two year old would eat, while the rest of us ate “real” food. After she lost two pounds in just a few days, I stopped it.

Because of this experience, when I was first diagnosed with IC, the idea of doing an “elimination diet” for interstitial cystitis was nearly paralyzing. As a result, I did things the hard way for the next few years. I experimented with my diet, relying on trial and error, mixed with a hearty portion of denial.

It wasn’t until I started counseling IC patients and studying the IC Diet list that I recognized the value of using an elimination diet strategy. I realized that the name “elimination diet” is just a fancy way to organize the testing of various foods, and it definitely wasn’t necessary to start with lamb, rice, and pears like my daughter did twenty years ago! Tens of thousands of patients before me had compiled their knowledge, and we knew the basics. (View 2009 IC Food List)

How did you determine your personal trigger foods?


Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

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 

 **Please SHARE using the links below!**