Wednesday, February 2, 2011

How Can Modifying My Diet Help Interstitial Cystitis/Painful Bladder Syndrome?

Dad and Boy with bandaidOne thing that 98% of interstitial cystitis/bladder pain patients agree on is that following an IC Diet does help, and it is one of the things we have in our control. Sometimes we ask, "Why me?" But think about it. almost everyone gets "something" eventually. Some people have arthritis, some have diabetes, some have even worse diseases like cancer. Having a interstitial cystitis is our "thing." Also, if you asked ten people on the street if they are supposed to be watching their diet in some way, nine out of ten would say yes....and the last one is lying.

The good news is that an individual's IC diet usually doesn't have to be as strict as you may think. Most IC patients find that they can have a substantial and healthy diet if they do a little detective work to identify their personal trigger foods. That is the idea of the elimination diet. Most people do not have to be on the most restrictive diet forever. And, although other IC patients are great counsel, your diet is probably not going to look like anyone else's. (For more on determining your personal trigger foods, see Customizing the Interstitial Cystitis Diet.)

One thing to keep in mind is that diet is rarely a treatment that is successful all alone. Most IC patients will take some medications, and some may need medical treatments like bladder instillations or pelvic physical therapy in addition to making lifestyle changes such as diet modification and stress management. observations tell me that an IC diet can ALWAYS help other treatments work better.

Let's look at an IC bladder in a bit different way. Think about when you were a kid and got a skinned knee. What happened next? Most likely, you or someone else washed it then put a bandage and maybe some antibiotic cream on it. You would give it some time to heal.

But what if, three times a day, you took off the bandage and scrapped some sand paper across the wound on your knee? It would take MUCH longer to heal, right?

If we eat IC trigger foods, we are compromising and possible undoing all of the good our medications are working so hard to do for us. In fact, I am willing to bet that if people watch what they eat while they take Elmiron, that the medication will have a much higher success rate...just an educated guess!
Why wouldn't you want to give your poor bladder every chance to rebuild its lining?

Remember, treatments for interstitial cystitis , including the IC diet, take time to work. It may seem depressing now, but it can take months or even years to feel better. If you are suffering now, it is important to keep that hope alive. You WILL eventually feel better; thousands of interstitial cystitis patients are living proof of that, but you have to be patient and really take some time to help yourself. If you need support, visit a local support group or connect with other patients online in groups such as the IC Diet facebook page.

So, if you are new IC patient....hang in there........ask your own best health care provider. Keep a diary or a calendar. Write down what you eat, what is going on in your life, the medications you are trying, and how you are feeling. If you can't figure it out, share your diary with a trusted friend or your doctor. Sometimes we are too close to a situation to see what may be hurting us.

I wish I could hug each of you who are still hurting and trying to figure all of this out. You CAN do it, you CAN get better, you CAN begin to just takes some time and patience.

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate 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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  1. Thank you. I'm in the midst of trying to find a treatment that works for me. As frustrating and depressing as it is, it helps to hear someone who understands say that it can get better.

  2. Thanks Julie. I am getting ready to start my elimination diet (moving this weekend). Will let you know how it goes!

  3. How long does it take to figure out if what you just ate is considered a trigger?? For me I cannot seem to find a pattern for what foods may be causing a problem.

  4. Stardust and Alysa, be encouraged! The elimination diet can be a long road, but it is worth every effort. Over time you might find out you can treat yourself to things you didn't think you could eat! (TREAT, not over eat) Also, be ware that YOUR BODY is different than everyone else. In my great experiment of the elimination diet, I found I can eat on variety of citrus, but none of the others. Several of the observations (subtle as they may seem) AND it has to be in season (as in ripe picked, not chemically ripened in shipping or the store) which means LOCAL is best for ME, also I have found that when I eat things organic my body does not have to also fight the pesticides. FOR ME I try to eat local, organic as much as I can (afford and can be found). Truly there is light at the end of the tunnel! Most days I don't think about the diet anymore because I know it well enough ~ the only time I get totally FREAKED out is when I see tomato based anything....careful it's in a lot of food, especially as a base. Last note: Be diligent! Be a warrior! After-all, its your life, and your health!