Wednesday, October 1, 2014

An Interstitial Cystitis Elimination Diet: Eight Ideas for Keeping It Simple

If you are newly diagnosed, or find yourselves in a flare you can't quite get control of, it is important to stick with the bladder friendly column of the IC Food List, keeping your meals as plain and simple as possible. It is much harder to filter out which food is causing your bladder symptoms to flare if you are eating foods with many ingredients such as casseroles, soups, or stir-fries. Of course, keeping your foods simple is only part of it, and sometimes you are in so much pain or you are so frustrated that you can't think straight. 

Trust me; I have been there. So I have come up with a short list here with some hints for keeping it simple at this stage:
  • Make IC menu planning a family affair. Consulting with other family members about menu choices can increase their understanding of your condition and the foods you can and cannot have.
  • Consider including foods that might be triggers for you, but that your family can eat. It was nearly a year before I realized that I had not been buying strawberries for my family just because I couldn’t have them!
  • Stick to your grocery list. Often people walk through the grocery store waiting for inspiration to strike. A list insures that you have all the ingredients that you need for the week and helps prevent impulse buying, which can be tough on the wallet.
  • Recycle your weekly meal plans like institutions do. Hospitals, schools, and nursing homes use “cycle menus” to simplify planning. Once you have developed a few weeks of menus that you and your family enjoy, go ahead and reuse them. Save the grocery lists, too.
  • Do your grocery shopping from your computer. Companies like “WeGoShop” or "PeaPod" allow you to send a grocery order to a professional shopper who brings your order directly to your house. This can be a great time and energy saver.
  • Make two batches of a meal and freeze one for later. Everyone has days when they are too busy or too tired to cook. It is nice to have something available that you can quickly reheat.  
  • Involve everyone in mealtime activities. Establish this as a special time to spend with individual family members. Assign days when each person has a chance to help with breakfast or dinner. Have all the ingredients out for people to pack their own lunches. Even small children can help to set the table, measure ingredients, or stir batter. 
  • Simplify cleanup. Use disposable plates and utensils on days when symptoms flare or energy is limited. Line baking dishes with aluminum foil or bake food in foil pockets. Use a slow cooker to bake a one pot, complete meal of meat, potatoes, and vegetables.
 For more tricks and tips on how to implement the IC diet, see Customizing the Interstitial Cystitis Diet: A Confident Choices® Book

PS: Thank you so much to all of you who are making your Amazon purchases though the Confident Choices links. Here are some of the products that purchased to help our cause!

Thursday, September 18, 2014

Can the Flu Shot Give You the Flu? Who Should Get the Flu Shot?

The Flu I.Q. widget is an interactive quiz to test your flu knowledge.
Click the picture above to test your flu IQ!
I am on my way to get my flu shot today...and the shingles shot, if you must know...and I wanted to remind you that if you have interstitial cystitis, a chronic illness, it is important for you to get the flu shot. I also have a heart condition, so it is even more important for me. 

Did you know you can't actually "get" the flu from the flu shot? If you experience some sniffles, low fever, or slight cough, that is actually your body working WITH the shot to rev up your immune system to protect you from something much much worse!

About 15 years ago, our family got the flu right at Christmas time. My middle daughter was the only one who got a flu shot as part of a well-child visit to the pediatrician (her birthday is in December!). One by one, starting with my husband and I, we both got very sick. The cough was unlike what I had ever experienced before and I finally had some idea what the word "delirious" meant. After using the toilet--interstitial cystitis doesn't take a break when the body is sick with something else--I woke up on the floor of the bathroom, evidently having passed out. My husband couldn't even get out of bed to help me, so I crawled back to our bedroom and put myself back to bed. Our oldest and youngest got sick as well. It took us three days to finish opening Christmas gifts because we kept stopping to rest. Our pictures from that holiday are pathetic. Pale and blotchy faces with dark rimmed eyes.

Ever since that year I have gotten my flu shot. I even stood in line for the H1N1 shot a couple of years ago; although now, H1N1 is included in the seasonal shot. I don't ever want to feel that sick again. I felt like I lost a month of my life.

But it isn't just ruined holidays and missed days of work. Every year nearly 38,000 people die from the flu. That doesn't take into consideration the People with chronic illness are at more risk for death from the flu than generally healthy people. Get your flu shot today, my friends!

For more information about the flu, the flu shot, and the most recent innovation, the flu mist, visit:

Friday, September 5, 2014

What Is Your Interstitial Cystitis "New Normal?"

Have you heard the phrase "new normal" which describes how a person  experiences life after diagnosis and treatment for an illness or chronic condition? It started to be used decades ago among cancer survivors, and many times people with conditions like interstitial cystitis/bladder pain syndrome use it as well.

Simply put, "new normal" implies that you may never go back to the body or even mental state that you were in before you were diagnosed with interstitial cystitis, but you have reached a point in treatment where you feel better and have even developed coping skills that make navigating your painful bladder easier and maybe even automatic. 

For example, I am MUCH better than when I was first diagnosed with IC! I now look at the couple of years before and after my diagnosis as one long bladder flare where I had to learn to listen to my own body and not ignore what was happening. 

Obviously the IC diet is important, but I don't have to watch what I eat as much as I used to.  I still have several things I definitely cannot touch: Soy, cranberry juice (but I can have a few dried cranberries on a salad), strawberries, very spicy foods (although I can have a pinch of spice in something like guacamole), alcohol, any tea other than chamomile and mint (never did drink coffee), and "too many" tomatoes or citrus. I am at a point where I can have one "bad" thing a day and do well. I am always on the hunt for new recipes and food isn't the frightening thing it was 15 years ago.

If I start to feel some bladder twinges or increase in frequency above my "new normal," I go back to a strict IC diet, which for me involves a lot of water, eggs, toast, cottage cheese, and vegetables. I have learned that I need to get plenty of sleep. I watch my stress level  and have coping strategies for that also. I take Epsom salts baths when I need them (or just when I want them!), and I don't apologize for the medications I need to take occasionally because they improve my quality of life, something I lost for a few years! (There is a chapter on how to handle flares in Customizing the Interstitial Cystitis Diet: A ConfidentChoices® Book)

I still void more often than someone without IC/BPS (mostly in the morning), and my body reminds me about once a week what the feeling of urgency really is, but since I truly don't have pain anymore, I can live with those things and even manage them with a few tricks I have learned over the years, but the most important thing is that I don't fixate on them. That is my "new normal." 

How about you? What is your "new normal" with interstitial cystitis? Let's help the newly diagnosed among us learn some ways to enjoy their lives again!

Sending you all warm, end of summer hugs!

PS: Thank you Confident Choices® shoppers!  It seems you are getting the hang of clicking on the Confident Choices Amazon links to make your everyday purchases work for our cause.  As you can see below, each purchase may only generate a tiny amount, but added together it makes a difference:

Here are some recent and (fun!) purchases by our readers that helped raise $75.00 last month:

Timex Women's T21693Elevated Classics Dress Burgundy Leather Strap Watch
The ProactivePatient: Managing Interstitial Cystitis/Bladder Pain Syndrome and the RelatedConditions
The Most Amazing Black Dress with Lots of Gold Sequins Made to Fit the Barbie Barbie Sized Doll
Genuine Elegante Adjustable Oxidized .925 Sterling Silver Spoon Ring with Swirl Motif


Customizing the Interstitial Cystitis Diet
Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder 
If you are a nurse, dietitian, or other nutrition professional, you can earn continuing education for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing.

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Monday, August 25, 2014

Three Thoughts About How Food Affects an Interstitial Cystitis Bladder
Picture courtesy of Interstitial Cystitis Network's
Bladder Photo and Video Archive.
People ask me if food can "cause" IC or if it can "hurt" an IC bladder. If I wanted to keep this post short, I could just say, "We don't know." But, I know you expect more from me than that. So here are some random thoughts from me on that perplexing and complicated issue.

Thought One: I think one of the problems is that when people with interstitial cystitis are feeling better, they really don't want researchers or physicians to poke around in their bladder just to see what it looks like. I know I honestly don't want to risk going "back" there. So, how do we determine if eliminating certain foods and drinks is actually helping heal a painful bladder, or if it is simply a comfort measure that helps control the symptoms? Does it matter if you feel better when you modify your diet?

Thought Two: I can eat a lot more foods now, and IC isn't the horrible monster that it was in the years right before and after I was diagnosed. I personally have the sense that my body has "healed," even though the doctors avoid using that term. On the other hand, If someone has interstitial cystitis, they are probably always going to be predisposed to bladder pain just like others get arthritis, stomach aches, or migraines. We see this everyday in people who were in remission one day and in a wicked flare the next.

Thought Three: As for how food and the body is reacting when you have IC, we truly don't know what the role is, and it is probably different for each type of food (and each person, if we are honest!) We DO know from research and from listening to IC patients that if a person eats or drinks something like coffee, that their symptoms of a "flare" might only last for 24 hours, or they may last for three weeks or longer. So the question is still there: What is the mechanism that causes pain and symptoms for several weeks after you drink that cup of coffee? There is obviously an effect...likely inflammation. Would medications like Elmiron work better if you were not constantly inflaming your bladder with coffee, tea, soda, etc?

The bottom line is you are still better to avoid these foods even if you are trying medications and instillations that are meant to help. Stop looking for excuses to "indulge" in that cup of coffee or diet soda. Make one small change at a time and "indulge" in the investment of the best health you can give yourself!

PS: Thank you to all of you who have donated to keep this blog going! If you are still thinking about it, remember, next month is IC Awareness Month. Consider making Confident Choices part of your plan! Or, if you are looking for a painless way to support our work, remember to make your purchases from through the links on this newsletter and on

Recent Amazon purchases that helped Confident Choices:

Interstitial Cystitis DVD: Healthy Body, Healthy Mind Series
Brita Sport Water Filter Bottle, Twin Pack
Desert Harvest Glucosamine & Chondroitin

If you are a nurse, dietitian, or other nutrition professional, you can earn continuing education for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing.

Tuesday, August 19, 2014

Interstitial Cystitis Diet Teleconference, August 20, 2014 (recording available)

On  August 20, 2014, I did a FREE Nutrition Chat via teleconference with Dr. Penny Wilson about interstitial cystitis and diet. Dr. Penny interviewed me for the first part of the call, and there was over an hour at the end for questions and answers.

It was great to hear so many of your voices and even better that I could answer your questions one on one. 

For those of you who would like to listen again or for those who could not attend the live version, there is a recording available on my website. Please visit IC Diet Teleconference to listen in and please tell your friends and your IC support groups!

If you are a nurse, dietitian, or other nutrition professional, you can earn continuing education for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing. 

Wednesday, August 13, 2014

Depression, Suicide and Interstitial Cystitis

If the death of Robin Williams teaches us anything, it is that depression can be insidious. It can simmer under the surface of a perfectly "happy" facade. It can be obscured by the veil of a busy, productive person's schedule. It is more than a blue day now and then. The darkness can be unimaginable to people who have never been there. When it strikes, there seems that nothing in the world can pull a person out of the depths. Physical pain can cause depression. Depression can cause physical pain. Addiction can cause depression. Depression can lead to addiction. Often we get mired in the chicken and egg discussion when what we need to do is just help the person.

If you are in suicide or depression crisis, please call: 1-800-273-TALK (8255). Don't wait. Call. Call for yourself. Call for someone else. Save a life.

You also might be interested in:

Interstitial Cystitis: Take Action to Defeat Depression
Interstitial Cystitis: Emotional Impact of Chronic Illness
Interstitial Cystitis Network: Understanding Depression

If you are a nurse, dietitian, or other nutrition professional, you can earn continuing education for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing

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Tuesday, July 15, 2014

Interstitial Cystitis Help: Ten Simple Things You Can Do Now to Feel Better!

I meet so many people with IC that waste their precious time and energy frantically trying all sorts of crazy things to get rid of their symptoms. Sure it is tempting to try every new diet idea out there. Who doesn't want to believe that a vegetable and fruit shake can cure their painful bladder disease? And it is much easier to take a handful of supplements rather than carefully choose your foods. The problem is when a person is trying all of these shady ideas, they could be feeling better sooner if they just concentrated on the things we KNOW can help:
  1. Write everything down. And I mean everything...keep track of your food intake, your symptoms, your activities, when you take your medications, if you are under stress, what seems to help, and what seems to hurt. Put numbers to everything you can; include portion sizes, times of voids, volume of voids, etc. Writing down what you experience is one of the most powerful tools you can use to get a handle on your symptoms. You can even take these diaries to your doctor to get help decoding patterns. For sample food and symptom diaries check out my website. For more information on how writing things down can help you, read Keeping an Interstitial Cystitis Diet and Symptom Diary.
  2. Choose your foods from the IC Food List, Bladder Friendly column. I know it is tempting to rationalize that you are "special" and can eat foods others can't; but, I see it all the time. Someone is convinced that coffee (soda, tomatoes, alcohol, soy, etc…) doesn't bother her interstitial cystitis bladder, but then she complains that she is in pain all night. Don't eat foods that you know bother your bladder. Just don't do it. In fact, if you are writing down your food/beverage intake and symptoms, you will not be able to ignore the connection.
  3. Drink plenty of water. You may need to experiment with types of water, but honestly, the best is tap water that isn't high in chlorine. Most IC patients do well with filtered water they keep in the refrigerator. (Try a Brita filter pitcher.) When traveling, keep a mental list of brands that you know you can and cannot drink. (I cannot drink Dasani, but I do well with Evian or Figi water and can pretty much find those anywhere.) Timing your water intake can be important as well. One trick that I found works for me is to drink a full glass of water about an hour before I go to bed. This seems to dilute the urine. I might get up in an hour or two to use the bathroom, but after that, I can stay asleep all night. Some people find it easier to sip on water all day long.
  4. Get plenty of sleep. I know, I know…how can you get a good night's sleep if you are up and down all night long? Well, my answer is simply, "Do your best." Practice good bedtime habits. Get into a routine of stretching, taking deep breaths, turning off the electronics, using a white noise app on your phone, etc. Give yourself permission to rest during the day if you need to. Avoid over the counter sleep medications; rather, ask your doctor about drugs that might help. Some commonly used medications for IC include amitriptyline and hydroxyzine HCL which can also help patients sleep better. Read Are You Sick and Tired of Being Sick and Tired? for more ideas.
  5. Practice stress management. The mind-body connection is not hocus-pocus. It is real. (I love Candace Pert's book, Everything You Need to Know to Feel Go(o)d!) Your body reacts to stress by flooding your system with chemicals that can eat away at your bladder and cause interstitial cystitis flares. No, we can't avoid stress entirely, but you can short circuit the body's response to it. Take three deep breaths, walk around the block, get a massage, ask for a hug, meditate, or pray. (Check out Beaumont's Guided Imagery for Relaxation.) It even helps to talk about or write down whatever is bothering you. Many times when we put words to what we are feeling, we realize the situation is not as bad as we thought. For more information see "Can Stress Affect Your Bladder?"
  6. Take an Epsom salts bath. Many IC patients have spent years thinking they were having repeated urinary tract infections, so this suggestion is not easy for them. But baths can be helpful and healing for someone with interstitial cystitis. Use warm, not hot water. Add about a cup of Epsom salts to the water. Don't put anything else in the water other than a few drops of essential oils (try chamomile or lavender). BTW: Epsom salts are not the same as table salt. The magnesium and sulfates are released in the water and absorbed though the skin. It can even be soothing on tender vulva or scrotal tissues.
  7. Learn the fine art of minimizing what you miss, focusing instead on what you can do. I can't have strawberries, but I can eat my favorite, raspberries. I may not be able to ride a bike, but I love taking long walks. (See Staying Active with Interstitial Cystitis.) Working out compromises and "substitutions" for your romantic life can shift the emphasis from "I can't be intimate with my spouse," to "What kind of fun things CAN we do?"
  8. Find other IC patients to talk to. I can remember the exact day that I found the Interstitial Cystitis Network forum. That was also the day I began to heal. After feeling isolated for months, I finally found people who understood. I learned about new treatments and coping strategies that I use to this day. I still post there several times a week answering questions.
  9. Research your condition, but don't get obsessed. A good way to get a taste of what is happening in the world of interstitial cystitis research is to sign up for a newsletter from a reliable organization like ICN, ICA, or Confident Choices. You can also sign up for Google Alerts with a variety of search terms (I get notices for "interstitial cystitis," "interstitial cystitis diet," "IC Diet," "Julie Beyer," and "painful bladder.") The point is to keep up with the most recent research and treatment possibilities without going overboard sitting at the computer all day and night.
  10. Don't forget you have the rest of your life to live! Yes, it is important to talk to other IC patients and spend time on the computer researching your disease, but be deliberate about maintaining balance. If you are visiting the ICN forums, set a timer for 30 minutes or an hour. When the timer goes off, find something else to do. For every book you read about IC, read two on other topics. For every minute you spend chatting to other IC patients online, find something wonderful to do with your real life friends and family.
What are your must do coping strategies to feel better with IC? Did I miss anything?

If you are a nurse, dietitian, or other nutrition professional, you can earn continuing education for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing.