Friday, June 26, 2015

Interstitial Cystitis Diet Hacks Part 2: Bury Denial and Take Control


Should You Drink a Cup of Coffee?
Are you in IC Diet Denial?
Often I hear people asking if some IC patients are simply not diet sensitive. I know it is tempting to think that you might be a person who doesn't need to modify what you eat, but here is what we know:
  • No matter how the research is done, studies show that up to 94% of patients with IC are sensitive to some foods.
  • I often hear people with interstitial cystitis who are in a flare say following the IC Diet didn't help them. 
  • I never hear people whose IC syptoms are improved say they didn't modify their diet in some way.
Frankly, I believe that those whose bladder is flaring and say the diet "didn't work" likely had other things going on such as stress, pelvic floor dysfunction, physical activity, even problems with laundry soap, or they didn't give the diet a chance to work. There is also the possibility that they were following the diet incorrectly or they followed the diet but refused to give up something important to them like coffee, tea, or diet soda. Maybe the foods they ate contained hidden ingredients that bother interstitial cystitis in their foods like artificial colors, preservatives, soy, or MSG. Regardless. there is likely some reason why those people tried the diet and it failed.

The good news is that most people eventually figure out their own personal trigger foods; many using some sort of journaling technique. (See Interstitial Cystitis Diet Hacks Part 1: Why Journal?) Some people only need to avoid the most bothersome foods: coffee, tea, soda, artificial sweeteners, tomatoes, citrus foods, alcohol, soy, chocolate, and spicy foods. Some need a little more guidance with someone like me, a dietitian who knows IC. The bottom line is that diet is an important base-line treatment for IC.

Were you ever in denial about how diet affected your interstitial cystitis symptoms? What are your most bothersome foods? What are your least bothersome foods? Let's continue the conversation here in the comments or on the Confident Choices Facebook page!

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!

Sit and Be Fit Exercise DVD 

ZenGate Samsung Galaxy Note 4 Wallet Case

Puroast Low-acid and Decaf Coffee

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 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 


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Tuesday, June 23, 2015

Interstitial Cystitis Diet Hacks Part 1: Why Journal?

Writing In a Journal
Do you write down your foods and symptoms?

I have to tell you a cool story. Before I had interstitial cystitis and became a reluctant expert on the IC Diet, I was a regular, everyday dietitian working in a hospital weight management facility. I loved my job. Loved the people I worked with and the patients we saw.

Occasionally over the years, I wondered what happened to some of them. Then recently I ran into one of my former patients who recognized me. It appeared at first glance that she had kept the weight she had lost off (which is more than I can say for myself!), but she had a surprising story to tell.

"Julie, after a few years of maintenance, I gained about 50 pounds back. I realized I had to do something or I would be back where I started, and I came across all of my food diaries in my kitchen cupboard. I had stacks and stacks of them. I want you to know I sat down right there on the kitchen floor and started to read them again....all the food I ate (and wanted to eat but didn't), all the feelings I had (good and bad) about losing weight, the new recipes I had tried back then, the number of steps I took each day....all of it. It was like taking the weight management classes all over again, and I could hear your voice teaching and guiding us through the process. I even remembered you telling us to save the diaries forever so we could we could revisit them in the future. Well those diaries are the reason I was able to lose those 50 pounds again. Thank you!"

Now, to be honest, I had totally forgotten about my advice to save the food diaries. I am sure I said it, but nevertheless, this wonderful woman's story reminded me once again about why food and symptom diaries are so important for interstitial cystitis/painful bladder patients! Not only can they help you figure out your food and other triggers, you can record your symptoms, your feelings, your limitations, and your victories! Your food and symptom diaries are YOUR IC story!

How can you make the best of your journaling? Try to do each of these three things every day:
  1. Spotlight what you are doing. Recording your food, activities, symptoms, feelings, and challenges raises your own sense of awareness. Keeping tract of these things can provide you with valuable insight on how the food you eat or the things you do affect your symptoms.
  2. Set small goals for yourself. Sure you want to be pain-free. That is an umbrella goal for us all. But how do you get there? Maybe you want to drink less coffee and more water. Or, maybe you want to move more each day. Even write down when you try new medications and supplements and keep track of how you feel. Committing these goals to paper can help you navigate the many changes needed to have a healthier IC lifestyle.
  3. Record the results of small changes. Did you feel better or worse trying a new brand of water? Did hiking at the park give you less pain than riding your bike? Did the new recipe you tried bother you? If not, did your family like it? 
In addition, your journal can be a valuable tool when you visit your health care providers. You can talk to them about the changes you made and how they worked for you. You may be able to explore treatment strategies together based on the patterns, successes, and failures you read in your diaries. Finally, if you save these diaries like my weight management patient did, you will have them to look back at if you have a flare or recurrence of symptoms.

How do you journal? Do you keep track of the foods you eat and the things that you do? Have you found it helpful in managing your own IC care plan?

You can find free downloadable samples of food and voiding diaries at IC Recipes and Resources!

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

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


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Saturday, February 21, 2015

Going to Church with Interstitial Cystitis


Body Mind Spirit
 (This blog post was written by my friend, Jolene Bates. Whether you are religious or not, science has shown that people who participate in spiritual practices are often happier and healthier. Have you missed going to church? Here is one alternative!)

Hi, my name is Jolene. I was diagnosed with IC in 1975. One of the many things in my life impacted by IC is my ability to enjoy church services. Some days I would get along fine, but just as often I would find myself needing to get up to go the bathroom and feel uncomfortable because I felt everyone was looking at me when I made my way out of the service. On days when I was flaring badly, it was not even possible to think about going to church.

Over the years many things happened relating to my ability to get to church. A few years ago after we had made a move to a rural area of Iowa, I found myself wanting to get back to church. I live approximately 40 miles round trip from a church I might have wanted to go to. We don't have a lot of money, so that in and of itself was going to be an issue on a consistent basis. The other part of that was so many days my bladder was not going to allow me to do that kind of traveling.

One of my online friends is a member of Westside Family Church in Lenexa, Kansas. This church has what they call an online campus. Every Sunday at 8:30, 9:45 and 11 am, CST and 5 pm, CST; they have a live service with music and sermon. The exact service that is taking place in their church in Lenexa is being shown live on the internet! During the live services, there is a chat box and a live prayer feature as well as service notes are available online. They even have a Facebook group for online campus, so that people who connect with us online for services can even get prayers and support during the week. I tried it out in 2011 and loved it.

To make a long story short, I am now an online volunteer and typically volunteer during the 8:30am and 5 pm services on Sundays. The services are an hour long. They also have started showing the recordings of previous Sunday services for the past month all through the week at different times but those services don't have the chat box feature. They also post just the sermon portion of the services on YouTube. Because of what I do volunteering online, I am also able to turn the chat feature on and off so if there is a time other than Sunday when you or your family or friends want to watch a service, if I am available, I will be happy to help you share a service with your friends and have the chat box. It is a great way to connect with family for church when you don't live close to each other.

This church has been so loving and welcoming to me and I have never stepped foot in the physical church yet. I lead online Bible study groups and Lifegroups via closed Facebook groups for women for them that has both WFC members and non-members alike. Since I am considered part of the volunteer team for the online campus they make sure to include me via Google Hangouts for video meetings.

Today, you don't have to give up church because of interstitial cystitis. If this is an issue for you, do a little searching online for spiritual communities that meet your needs. If you are not sure where to start, please consider trying Westside's online campus ministry. If you are on and see "Jolene from Iowa", that's me!!

Questions? Please email me with any questions at joleneb2@yahoo.com. I am also on Facebook, Jolene Bates

_______

I truly appreciate my Amazon shoppers! Remember, as you are doing your shopping on Amazon this holiday season, please use my Amazon links. You don't have to purchase the product it links to. Once you get to Amazon, you can browse and Amazon will remember you entered the store through Confident Choices. This is a simple way to help pay for the CC website, blog, newsletter, and social media time! http://tinyurl.com/ICCookbook


Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

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


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