When a person is diagnosed with a chronic illness, many things in their life seem to change overnight. If you have been diagnosed with interstitial cystitis (IC), also called painful bladder syndrome (PBS), you probably have experienced disruption in your work life, social life, family life, and personal relationships. It is hard enough to dodge your bladder symptoms, let alone run to the doctor all the time, administer a variety of medications, self-catheterize, and even get enough sleep. Very often the first thing someone says to me when they consult me about IC and diet is, "I feel like everything has been taken away from me, now I have to change what I eat?"
I know that doing the "right thing" with food on an interstitial cystitis diet can be hard, but you are not alone. If changing our diets were easy we wouldn't have any diabetes, heart disease, obesity, and likely would have very little cancer. In fact, if you asked ten people on the street whether they should be watching their diet in some way, nine out of ten would say "yes" and the tenth would be lying! The complication is that food is not just fuel to a human being; it is a social event, it is a holiday, it is family time, and for many, it becomes a "friend."
The thing with IC is that we have a pain mechanism telling us to "pull our hand out of the fire" so to speak. It isn't as instantaneous as a burn, but it is still our body telling us to stop what we are doing and don't do it again.
That is why I really encourage people to keep a diary about what they are eating and what their bladder symptoms are. Not only is it a reminder of what you are doing and why, but it can be good to assess even small improvements.
In fact, keeping a diet and symptom diary was one of the first steps I took to actually feeling better. I used a calendar. You can use a notebook, an online journal, or even notes on your smart phone. I also have blank forms for free on my IC Diet website if you want to download them. (IC Diet and Symptoms Diaries) The key is the writing. Just like losing weight, it doesn't even matter if you look back on what you wrote, it is the act of writing it down that seems to hold the power for change.
Here are some other hints:
- Record everything you put in your mouth. Make sure to include seasonings, preparation, portion sizes, beverages, and even medications. This was how I realized that the decongestant I was taking for allergies was a real bladder buster!
- Record your physical activity. Does riding your bike bother your bladder? Does swimming cause you irritation? Does Zumba cause pelvic pain? What types of physical intimacy bother you? What things don't bother you? Keep in mind that unlike food, sometimes pain from exercise/intercourse can happen 24 to 48 hours later.
- Record your symptoms and give them metrics. What is your bladder/pelvic pain level on a scale from one to ten (one being no pain at all, ten means you need an ambulance to get you to the hospital.) How often do you void? How much are you voiding? All of these things are indicators of interstitial cystitis/painful bladder syndrome and putting numbers to all of these can help you know if what you are doing is helping or hurting.
Most of all, I want to encourage you to take control of the food you eat and the lifestyle you lead so that interstitial cystitis does NOT control your social life, your work life, and your personal relationships. You CAN get better. You CAN live a better life, even if you have IC or some other bladder pain. There is always hope for healing! You can do it!
PS: Don't forget to download your free IC Diet and Symptoms Diaries. There is also a sample pain scale on the sample symptom diary. They are links right under the page navigation tabs. Looking for more motivation and encouragement? Check out Customizing the Interstitial Cystitis Diet and the IC Diet Facebook page!
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
**Please SHARE using the links below!**