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.

Tuesday, April 8, 2014

Helping Spouses and Other Family Members Understand the IC Diet

One of the most common questions I hear from interstitial cystitis patients is, "How can I explain my dietary restrictions to my family members?" 

I am sure many of you have heard people say things like, "Just have a little coffee, it won't hurt you!" Or, "If you drink cranberry juice, that will cure your bladder infection!" Or even, "You aren't any fun any more because you worry about your food all the time!" Trust me, I live the same life you do and have heard it all. 

Of course, most of the time, our family members have our best interests at heart, but they just don't know as much about the disease as we do. They simply haven't spent as much time as we have researching our disease, including sifting out the good information from the bad we have read on the internet. I don't know about you, but for many people, it can be exhausting trying to explain the IC dietary modifications to people over and over. So how can you bring your loved ones up to speed about the IC diet? Here are some suggestions:
  1. First, set the tone for collaboration instead of conflict. Ask for help. Let your spouse or other family member know you appreciate their concern and that you would like to work together to manage the modifications of your interstitial cystitis diet.
  2. Ask them to learn along with you. Have them follow this blog, "like" the Confident Choices Facebook page, or sign up for my newsletter. You can also send them links to articles you read on ICN or other reputable IC diet websites.
  3. Print off the two page IC Food List for them. Yes, give them their own copy. Let them know which foods are definitely off limits for you and let them know you would appreciate help finding recipes that include the foods you CAN have. Not only are you reinforcing that this is the diet you are working from, but you are hopefully going to collect some great new recipes!
  4. Consider giving someone their own copy of Confident Choices: A Cookbook for IC and Overactive Bladder if they don't live in the same household as you do, but you eat with them often (your best friend, your parents, your siblings). Imagine the relief they will feel having a simple, go-to book for recipes that they can be confident you can eat. 
  5. Allow your spouse or family member to listen in on a phone or video consultation with me. Sometimes when someone hears the information from an expert, it reinforces the concept. It will keep you on the same page. (Just always let me know someone else is there!)
  6. Alternately, listen together to the Dietitian Central on-demand webinar which has a LOT of information for patients. At only $28.00 it is a huge bargain. Although the primary audience for the presentation is nutrition professionals, I am extremely thankful that Dietitian Central has allowed patients to listen to this webinar. (Note: Buying "credits" for the webinar can be a little tricky. so if you need help, please email me at NutraConsults@aol.com and I will send you step-by-step instructions.)
The important thing is that in most cases your family really does want to help you. Remember, the key is collaboration, not conflict!

Thursday, March 20, 2014

What Does the First Day of Spring Have to Do with Interstitial Cystitis?

Today is the first day of spring after the coldest and snowiest winter that most of us can remember. There is still a LOT of snow on the ground here in Michigan, but it was raining and not snowing yesterday, and the winds of spring are blowing as I write this.

Actually, I wasn't writing a blog post initially, but was writing a new program for Dietitian Central about the emotional impact of chronic disease, and I thought about my personal philosophy and how HOPE is critical to healing...and then I thought about how hope and spring go together.....and well, you could say that this blog post for YOU is me procrastinating about what I should be doing today. But it isn't. Because it is always about you.

You see, hope has always been central to what I do for interstitial cystitis painful bladder patients. I have been a member of the IC Network's Support Group Forum since I was diagnosed with IC in 1998. The owner, Jill Osborne, has since become a great friend, and I have been a forum "Leader" almost from the beginning. I always say that the people I communicated with over the years really saved my life when I was in the most pain and was discouraged.

It was at the ICN that I learned that HOPE is THE most important component to treating a chronic disease. Once you have hope, you can begin to look for solutions. Once you have hope, you have more energy. Once you have hope, you are opening your mind to the possibility that one day you can get better. Hope isn't magic, but it removes the paralyzing emotions of fear, discouragement, defeat, frustration, and anger.

Of course, hope only works when it is internalized by the patients but others can influence the level of hope within a patient with chronic illness. We have all probably had an encounter with less than compassionate medical providers. We have all probably had conversations with family members and friends where they made it clear that they don't understand what you are going through. We all probably cheer when we see those mini-posters on Facebook that exclaim some version of, "Until you walk a mile in my shoes, don't judge."

But what I want you to focus on today are the people who DO understand. Search out hope where hope is nurtured. Find medical providers who truly love to treat interstitial cystitis patients. Help other patients when they are down and you will find they will reciprocate when you need encouragement. Read hopeful posts from people on ICN and Facebook, and don't feel bad about walking away from chronically negative people. Watch funny movies and read uplifting books.

What do you do to nurture hope? How do you keep going when life throws you curve balls? What do you do to encourage others with chronic illness?

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, March 4, 2014

Interstitial Cystitis and Prescription Pain Medications

I am becoming increasingly frustrated with the media and legislators who want to put more restrictions on prescription medications. I work with chronic pain patients every day who have very painful bladders often along with other painful conditions, so it strikes me as evil to put more controls on life-saving drugs when I know millions (yes millions) depend on them to have some sense of a normal life. Dependence of this sort is NOT the same as addiction or abuse. Each of those words has its own, distinct medical definition.

I don't believe the answer is to over-regulate the drugs for people who "depend" on them. Imagine already having a chronic illness where you have to go to the doctor several times a year, then asking that same person to go to the doctor every 30 days to renew their prescription. Rather than make life even harder for people who really NEED the medications, let's provide deliberate and consistent education about keeping these drugs locked up if someone is prescribed them and allow for enhanced identification and intervention for those who abuse (usually illegally) or those who are addicted (a physical and mental health condition). This WebMd article is very thoughtful on the topic: http://www.webmd.com/pain-management/features/prescription-painkiller-addiction-7-myths?page=1

Ok, that's my soapbox for the day. What are your thoughts?

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.

Thursday, February 6, 2014

Interstitial Cystitis Diet Dilemmas: Why No Chocolate?

As we approach Valentine's Day, I know many of you with interstitial cystitis/painful bladder are wondering, "What is so bad about chocolate?" (And then secondarily, "If I can't have chocolate, what can I have? I promise, I will get to that in a minute.)

Although we don't have a lot of research (yet) answering all of the "whys" and "hows" of the IC Diet, we can look at other research out there and make some high quality guesses.

Now most people would guess that it is the caffeine in chocolate that causes the frequency, urgency, and pain symptoms flare in an interstitial cystitis patient. The truth is, however, that chocolate generally has very little caffeine. According to the Center for Science in the Public Interest, one serving of chocolate has only about 9 mg. of caffeine while a venti-sized Starbuck's coffee has about 415 mg. In the scheme of things, 9 mg. really isn't a lot. (On the other hand, that 415 mg? Wow!)

In addition to caffeine, however, chocolate contains theophylline and theobromine which are naturally present in cocoa beans (and tea and coffee). These both act as cardiac stimulants, nervous system stimulants, and yes, renal (urinary tract) stimulants. This is one reason why some people are still stimulated by chocolate, caffeine-free tea, and coffee. These “natural” substances are metabolized much slower and can stay in the body even longer than caffeine. Just ask someone who is treated with theophylline for their asthma. They are running to the bathroom constantly!

Finally, most chocolate is made using other ingredients that could be considered problematic for IC patients. The details depend on the brand and particular product, but in generally, the cheaper the product, the more filler substances you are likely to find.

So, as a interstitial cystitis patient, what are your options? Plenty! Carob, white chocolate, and even butterscotch are great substitutes for chocolate. And most people would agree that nothing quite compares to a homemade dessert. Why would you choose a store-bought chocolate chip cookie made with mystery ingredients when you could have homemade oatmeal cookies made with yummy butterscotch chips? (To increase the "homemade" value, make your own butterscotch chips!) Or why would someone choose a pre-packaged chocolate pudding when he or she could have a homemade rice pudding or crème brulee?

To get you started, here is the recipe for Butterscotch Brownies with Carmelscotch Frosting from

Butterscotch Brownies

  • 1/4 c. shortening or butter
  • 1 c. light brown sugar, packed
  • 1 egg
  • 1/2 t. vanilla
  • 3/4 c. sifted flour
  • 1 t. baking powder
  • 1/2 t. salt
  • 3/4 c. butterscotch chips

Heat oven to 350°F. Melt butter over low heat. Remove from heat and blend in brown sugar. Cool. Stir in egg and vanilla. In a separate bowl, sift together flour, baking powder. and salt. Stir dry mixture into butter, sugar, egg mixture. Fold in butterscotch chips. Spread in well-greased and floured square pan, 8 x 8 x 2 inches. Bake 20-25 minutes until a light touch with finger leaves a slight print. Cut into bars while warm.

Caramelscotch Frosting

  • 1 c. brown sugar, packed
  • 3 T. shortening
  • 2 T. butter
  • 1/4 t. salt
  • 1/3 c. milk
  • 1-1/2 c. powdered sugar, sifted

Put brown sugar, shortening, butter, and salt in sauce pan. Cook over medium heat until mixture begins to bubble. Stir constantly. Add milk, mix well. Continue cooking over medium heat until mixture boils, stirring constantly. Boil vigorously 1 full minute.

Remove from heat and cool to lukewarm. Add powdered sugar all at once and beat until creamy and thick enough to spread. If it becomes too thick, soften over hot water. Will cover an 8-inch round double layer cake or a 9” x 13” single layer cake.

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.