Interstitial Cystitis: Staying Active

I know it is tempting, but don't stop living just because you have a chronic illness like interstitial cystitis. It is important to take care of the rest of your body even though part of it is misbehaving. Getting enough exercise is important for weight management, a healthy immune system, can stabilize moods, contributes to deeper sleep, and even provide a social outlet for people who tend to become isolated with this disease.

If you find you can't participate in the activities you used to, give yourself time to grieve, but then put your problem solving hat on. Like altering ingredients in a recipe to meet the needs of your IC diet, if there is an activity you love, find a way to alter it, and if you can't do what you thought you loved, find an activity you can do.

I loved riding bikes...loved the breeze in my hair, the speed....loved that my whole body had to be engaged to make that two-wheeled machine work, but riding a bike poses some different challenges for IC patients. Not only can the pressure of the seat be uncomfortable, but a ride over rough terrain can be jolting to your bladder. Mountain bikes can be a wonderful solution to both problems. Shop carefully for a bike that has high quality shocks on each of the wheels and the seat, and opt for a wider saddle seat. You might also consider upgrading to a seat that is especially designed for the anatomy, sporting a hollow middle. Or, if you are looking for a biking activity that you can do in your home or at the gym, try a recumbent bike! Always check with your physician or physical therapist if you have pelvic floor problems before you ride a bike. 

If you can't ride a bike, walking is a great activity. If you are afraid to be too far from a restroom, you can walk closer to home, stroll at the mall, or pick parks that have restrooms closer together. You can also take shorter, more frequent walks. Science has shown that taking three, 10 minute walks a day is the equivalent of taking one 30 minute walk. Fitness trackers like pedometers, smart watches, or Fitbits can help you keep track of your miscellaneous activity. If you have not tried these health tools, you might be surprised to find you are walking more that you think each day. 

In addition to walking and biking, consider going for a swim. Some IC patients experience an increase in symptoms when they swim. Yet swimming can be an excellent low impact activity for people whose bladders seem to bother them with every step. Once again, modification is the rule. If you have your own pool, ask your pool supply company about sanitation chemicals that don’t use chlorine, or switch to an ozone purification system, which reduces the amount of chlorination necessary. If you do swim in a chlorinated pool, keep your time in the water short, and rinse off immediately after you get out. In all cases, IC patients should change into dry clothes shortly after swimming to avoid the discomfort caused by lounging in wet swimsuits.

No matter what you do, it is important to have fun. To kick boredom (and increase overall fitness), participate in a variety of activities. Many fitness trackers are associated with online challenges. A little competition can do wonders for your motivation! Or, turn up the music at home and dance a little everyday! If you are interested in trying yoga or taking dance classes, check with your local adult education department. These classes are usually reasonably priced and require a limited obligation. Getting to meet new people is a great bonus! 

Finally, if you are uncertain of your health and abilities, make an appointment with a medical personal trainer. These professionals are a cross between a physical therapist and a personal trainer and can often be found at a local physical therapy office. With a bit of guidance and supervision, you may learn a few new tricks that help build muscle, strengthen your heart, and help you . Let's keep moving!

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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

Clearing the Clutter of Bad IC Diet Information by Spreading GOOD IC Diet Information

Ok, this is me breaking out of my encouraging, positive mode for a second here. I am angry. I am frustrated. I am depressed……I have had enough, and I don’t know what to do. 

I just received an email from an IC patient who had been following a “virgin” diet for the past several months. She had eliminated gluten, dairy, eggs, soy, peanuts, sugar, and corn. She was eating mostly fruits and vegetables, and now she has horrible, horrible bladder pain.  At first, I wanted to SCREAM, “DUH!” But I didn’t….I encouraged her and talked gently...because she was afraid and she thought she was doing the right thing and someone else obviously convinced her to try this…and in the end she DID turn to me and I desperately wanted to help her. 

I get SO frustrated when I hear these stories. I totally believe in patients trusting their intuition and adjusting the IC Diet for their own needs, but where did she get this information? A random internet site? A Facebook or Pinterest group that is promoting unconventional interstitial cystitis diet practices? There is NO reason why this poor woman had to go through this because we have solid research now and excellent patient documentation about the foods that cause flares and those that do not. 

As I write this, I truly want to cry. Her life is precious and sacred and someone is stealing DAYS – WEEKS – MONTHS from her and other patients with their bogus information. 

Trust me, I know why the IC patients do it. I have been there.....experimenting and desperately trying to find out what is wrong with me. Yes, following the IC Diet can be cumbersome, but not as cumbersome as some of the alternate diets I have seen out there. How can we clear the clutter and just get back to basics with the IC Diet?? How many ways can I spread the message? Trust me, I don’t make any money doing this. I don’t work a full time job, I do this. I try to help you. I try to do it in as honest and encouraging way as I possibly can. Yet, when I hear these stories, I sometimes feel like my whole mission is pointless.

But today, I am going to give it another shot. Let me just take a deep breath and try to clarify some things....

First, what is the "IC Diet"? Over the course of several months in 2009, I met with representatives from the Interstitial Cystitis Association and the Interstitial Cystitis Network, and we went through the food list item by item. (See previous blog article: How Did the Standardized IC Diet Come About?) We compared the food to lists from emerging IC diet research and from decades of patient reports. We triple checked it against our personal consultations with painful bladder patients and quadruple checked it against our personal experience as patients ourselves.

Our two primary goals were to provide a liberal list of foods for patients to choose from as well as encourage them to eat. The third outcome was a bonus…the AUA came out the following year with recommendations that included diet modification as one of the first line interventions for newly diagnosed interstitial cystitis patients. What a victory! The doctors were now on our side!

But here’s the thing. The IC Food list isn’t sexy. It isn’t related to any of the fad diets out there. It doesn't involve any green smoothies or purple shakes. But it IS real food that you can eat every day. It is a HEALTHY, NUTRITIOUS diet based not only on science, but on tens of thousands of patients recording their personal findings. Although some IC patients might have additional allergies and foods sensitivities, most can eat the same basic foods. So our message was for people with IC to keep it simple and stay away from all of that other craziness that will just complicate things. Ignore the people who want to take your money. Educate yourself on what we KNOW about the interstitial cystitis diet and what has worked for tens of thousands of other people.

Second, finding good information: The Confident Choices books are not published by a big publishing house, but they provide EXCELLENT information on the interstitial cystitis elimination diet written in a language that most people find easy to understand, helpful, and encouraging. I care deeply about the patients and I hope that shows.

You can pay the same price for whacky interstitial cystitis e-books that tell you a bunch of bogus stuff written by people who don't care at ALL about IC patients.You can even spend your hard earned money on books that are poorly written or are too technical for the average interstitial cystitis patient. The biggest compliment I get on these books is that I gave straightforward and encouraging information. People begged me, “Just tell me what to eat.” So that is what I wrote. It is that simple. Why don’t people see that? The information is out there.

Third, getting additional help: What if you are still confused after reading my books? Or you feel like you really need to talk to someone about the IC Diet who “gets it?” That is normal part of the chronic disease process. It is confusing and crazy and you are exhausted and frustrated. If you want to take it a step further, I can help you streamline the process. 

The prices for these IC Diet consultations are reasonable and about 70% what most dietitians charge. I know insurance doesn’t cover this, so I want to make it affordable for you, the average person. PLUS….Talking one hour with me can save you hundreds of hours of research and thousands of dollars you might waste on other books and products. I can help you minimize your bladder symptoms while you maximize your quality of life. Isn’t that what we all want? 

Finally, spreading the word: Many of you follow me because you have already purchased my books or have had a consultation with me. For that, I thank you. But, now I need a little more help from you. Help me spread QUALITY information about IC Diet on your other Facebook pages. Tell your doctors about the Confident Choices books and my services when you go to your check-ups. Review my books on Amazon. Give people the correct IC Food List link. Tell other patients about my books. Tell them about the IC Diet Facebook page and this blog and my newsletter. Tell them I am here to talk to them when they are the most afraid and in pain. I can help people but they have to know I exist.

The bottom line: Help me combat the bad people who are spreading dangerous information.  I don’t want any more IC patients taken advantage of by those who give them a diet that will steal their life away. If you hear about bad information being spread, speak up or tell me so I can address it.

Now, I need to respond to another email from that patient who wrote to me this morning. Hopefully, I can help her out of this mess.  

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

Don't Waste Time: Stick with What We Know Works

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

Thank You, Dr. Oz, for Interstitial Cystitis Segment!

I was thankful to see that Dr. Oz highlighted interstitial cystitis (IC) on his show that aired February 20, 2013 in a segment titled "Myths and Lies Your Gynecologist Believes." Guest physician Dr. Lauren Streicher discussed a variety of conditions that can often be confusing for patients and physicians alike.    

I have listened to the segment about IC three times now and although brief, Dr. Streicher stated what many of us would have asked her to tell the millions of people in Dr. Oz's national audience: 

Interstitial cystitis is a painful bladder condition that gives people that insistent "gotta go" feeling. It is often confused with urinary tract infections. Most importantly, she repeated that having interstitial cystitis is no way to live, and that it is not a minor problem. She said you must go to a specialist like a uro or uro/gyn or even a pelvic PT who is familiar with IC.  

I have to say, for the few minutes she had to mention it, she did a great job. Although there was not enough time to talk about any treatments, this was still excellent exposure and validity for those IC patients who live with tremendous pain. I actually thought her presentation was confident and compelling. She spent as much, if not more time on interstitial cystitis as she did her other topics of the day.  

For those of you clamoring for more coverage about interstitial cystitis, we have to remember what this segment was about and understand the producers had to stick with that....conditions that are often missed by the gynecologist. Unless someone is doing a documentary on IC, we are not going to ever get a television doctor show to do a full hour on this disease. Remember, they are primarily in the entertainment business. It isn't just because it is a bladder disease; frankly, there are not that many diseases that are entertaining enough to fill an entire hour. We should be thankful that this popular show represented IC in such a compelling way. 

We DO have an opportunity to continue the conversation. Please take a moment to do the following:

1. Thank Dr. Oz, Dr. Streicher, and the producers of the Dr. Oz show on their website where they are showing the video: Myths and Lies Your Gynecologist Believes 

2. Thank Dr. Oz, Dr. Streicher, and the producers (comment and "like") on their Facebook page. 

3. Share the video segment with your family and friends.

For those of you interested in seeing IC covered in even small ways like this, here is a link to a blog article I wrote about getting IC recognized by the media: Petitioning TV Doctors and Health Experts to Talk About Interstitial Cystitits

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

 **Please SHARE using the links below!**

Interstitial Cystitis Diet Books: Customizing the Intersitital Cystitis Diet

Recently, I had someone ask me what the differences were in my books for interstitial cystitis and some other IC Diet books, so I thought it would be a good thing to post here.

At http://ic-diet.com/, you will see pictures of my three books about the IC Diet. If someone is just starting the elimination diet, Customizing the Interstitial Cystitis Diet, is probably the best place to start. It walks you through the elimination diet step-by-step including some meal plans, the food list, grocery list, some recipes and additional helpful information about other lifestyle changes you can make to reduce your bladder symptoms.

For those of you who don't know, I am a dietitian who also has interstitial cystitis. (I always say you get smart about stuff you never wanted to be smart about!) I was part of the ICA/ICN team that put together the IC Food List that is most commonly used today. In addition, I have worked with IC patients for 15 years now. I do consultations, but found that I was saying the same thing over and over and over to patients....that is why I wrote the book.

So, with Customizing the Interstitial Cystitis Diet, you get two or three hours of my diet and lifestyle expertise for around $30 instead of $90 an hour which is my fee. In fact, it is obvious I am not in this just to make money because I always tell people to buy the book first because most IC patients don't need my one-on-one help after they read the book. For those who decide they do need more guidance, getting the book first always saves time and money because we start out much further down the educational line. 

As for the other two books: A Cookbook for Interstitial Cystitis and Overactive Bladder is just that--a book full of recipes that also has a small amount of educational material. There are many other IC cookbooks out there that are very good too. But that is okay with me; we all like a lot of cookbooks, right? If I had to differentiate, I would say my IC cookbook is more for the brand new patient who is looking for a bladder safe diet with easy to prepare recipes using everyday foods. It truly falls under the category of "just tell me what to eat!" 


Finally, Interstitial Cystitis: A Guide for Nutrition Professionals, was written as a continuing education vehicle for medical professionals who want to learn more about interstitial cystitis so they can help their patients. This book would also be great for an interstitial cystitis patient who want to learn more about the medical research behind the IC diet.


As you probably know, modifying diet helps nearly 90% of IC patients, and having quality tools like these books can make the difference between living in pain and frustration and living a fulfilling life. Following an IC diet may not get rid of all your bladder symptoms, but the vast majority of people with interstitial cystitis experience significant improvement. Keep in mind, diet is something you CAN control. You CAN do it!

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

 **Please SHARE using the links below!**