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.

Tuesday, January 28, 2014

Are You Becoming Nutrient Deficient on the Interstitial Cystitis Diet?

I just had another interstitial cystitis/painful bladder patient contact me for symptoms of vitamin deficiency because she went "gluten-free" based on what she read in a book. This is the third person in a matter of months, and these are serious deficiency diseases we have not seen in this country for nearly 100 years. (Look up beriberi, pellagra, and megaloblastic anemia.) If little ol' me has had three people contact me in the past few months, I imagine there are thousands out there with the same problem.

I know some people with IC say they are being helped by going gluten- or dairy-free, and if that is the case, I am thrilled for them. I am not against anyone trying something that they feel could help their painful bladder and frequency. But if you want to try it, I want you to KNOW going in that it is very difficult, especially when paired with the IC Food List that we ALREADY KNOW works for 90% of the people (Documented, not made up....90% plus people with interstitial cystitis are actually helped with this IC Diet Food list). Trust me, the last thing you want to do is give yourself MORE problems than you already have. 

Nutrition is a science for a reason. Until we start enriching other non-gluten grains with the vitamins and minerals you are missing when you don't eat wheat, rye, and barley, you will have to watch your diet extremely carefully to be sure that you are getting all the nutrients you need. Oh yes, keep in mind that you also can't supplement many of these nutrients with a multivitamin like someone with celiac (but no IC) can, because that hurts an IC bladder. It is tricky business at its best.

My friends, you only have one life. Some of you are desperate to get well, I know that. I have been there. But don't get so frantic that you reach for everything out there and end up worse than before.

If you are new to IC and the interstitial cystitis diet, here is the plan I work from with my patients:

1. Start by eliminating the top offenders. Citrus, spicy hot foods, MSG, soy, caffeine, coffee, tea, sodas, alcohol, tomatoes, cranberry juice, chocolate. See how you do without changing anything else. Give it a couple of weeks to see if you improve. Be sure to keep a food and symptom diary to be able to "measure" your success. If you lower your pain from an 8 to a 4, that is a success. Not everyone can get their pain down to zero or their frequency to 4 times a day.

2. If eliminating the main foods doesn't work, go to the Bladder Friendly list on the IC Diet. Again, keep the diary and follow for a few weeks to see if you improve. You might have to muster up some patience, but try. Eventually most people feel better.

3. If you still don't feel better, remember that stress, physical activity, and sexual intercourse could be triggering your interstitial cystitis symptoms. It isn't always food.  Don't keep eliminating foods in your diet just because you "think" they are bothering you. Use your diary. Talk to someone else who might be able to see patterns. Try to approach this as scientifically as you can.

4. If you have faithfully tried everything else and you have a history of allergies, consider being tested for food allergies. Now and then an IC patient reacts to a "Bladder Safe" food and it is usually because they have an allergy.

5. Finally, you could try the gluten-free or the casein-free diets, but that is much further along the line. If you don't feel you are being helped a couple of weeks after starting one or the other of these restrictive diets, you probably won't be helped. I also advise to only try one first. That way if you DO get better, you aren't trying to figure out which food group is hurting you.

As many have discovered, when you take a whole food group out of the diet, it becomes much more difficult to balance your nutrients.  Those eliminations need to be approached cautiously or you will create many more problems than you already have. It is extremely frustrating that medical professionals with only a teeny fraction of the nutrition training that dietitians have pass out this information so freely.

Don't waste your time and money frantically listening to everything you read on the Internet. If you want help, I want to help you. I CAN help you. I am working with groups of dietitians to help train more people who can help you, but that is going to take years. Until that happens, however, I try to accommodate as many people as possible into my schedule. If you want to have a private appointment with me, I do phone and video (Facetime/Skype) consultations for people. Please email me at NutraConsults@aol.com.

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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