My Journey with IC

My name is Crystal Liu, I am 39 year old living in San Diego. My passions include cooking, skiing, scuba diving, and gardening; all things you may think would be difficult while living with frequent bladder infections and Interstitial Cystitis (IC). However, I am here to tell you that life doesn’t end with an IC diagnosis.

My life represents the hope that we can find even after struggling with the pain, confusion and frustration that comes with having this disease. Today, I am pain free and eating and drinking primarily whatever I want (which isn’t typical for someone with IC). So, if you are currently in the thick of the struggle, please know there is light at the end of the tunnel. Through self-discipline and positive attitudes & outlook, I know you can get there too! Here is my story. I hope you find it inspiring.

I was diagnosed with IC at 30 years old. This came after a long road of terribly painful bladder infections since I was a little girl. When I was young with these recurring bladder infections, doctors still weren’t very aware of what IC was and they could offer no answer to why I was sick.  

Looking back, I will often ponder if my IC was misdiagnosed as an infection or if all the infections caused the IC. I believe it is the latter. Given the infections, I know that there was real damage being done to the lining of my bladder. It would often take months to fully heal after a severe infection or multiple rounds of strong antibiotics. Doctors ended up putting me on a daily antibiotic to help me find relief.

After I finally received my IC diagnosis, I began researching EVERYTHING about it. Finally, an answer to why I have always been so sick, something I can tackle. I learned that the IC diet is super important and this is where self-discipline comes into play. Typically, the inner lining of the bladder is irritated and inflamed in people with IC and also those with recurring bladder infections. So the food and beverages we eat and drink can either help soothe or further inflame the bladder lining. Unfortunately, it is not an overnight fix, and sticking with the IC diet can take months to begin helping you to feel better. The key component to an IC diet is a low acid diet with LOTS of water while avoiding things that cause inflammation. One doctor told me I need to be drinking enough water that my urine is generally clear. Easier said than done! Low acid means avoiding things like tomatoes, chocolate, coffee, citrus and, unfortunately, a lot of salad dressings and sauces. I found that a diet low in sugar and gluten helps reduce inflammation.

After learning so much, I took over leading the IC support group in San Diego in an effort to share what I learned and help others. I was attending the group as a member and found that talking with others who suffered the exact experiences I had really made a difference in my mental ability to heal. Something about knowing that I was not alone in what I was going through helped me a lot. In addition, hearing stories of people who found ways & natural treatments to live a pain-free life fostered a spirit of hope to replace the despair I had been feeling. So when the original coordinator of the group stepped down and asked me to to take over I eagerly agreed. I am happy to share all I have learned & my story of healing from IC and recurring bladder infections to provide a picture of hope for others.  

After 3 solid years of extreme discipline, the bladder infections stopped and my IC pain went away. However, it is not to say that those 20+ years of heavy antibiotic use have not done other damage to my body and gut biome. Unfortunately, now, many years later, I am fighting a new enemy, Small Intestine Bacteria Overgrowth (SIBO). I strongly believe that the antibiotics have wiped out my good gut flora and now I am struggling to regain what was lost.  

IC affects millions of people and is often misdiagnosed or misunderstood. My journey with IC has not been easy, but with attention to diet, investing in preventative practices and finding a community, I no longer feel inhibited by my diagnosis. I hope the same for you!

You can also find support in the Uqora Collective. Connect with fellow Uqora customers in our private community forum — share stories, swap tips, and know that you are not alone.