If you are an interstitial cystitis (IC) or painful bladder syndrome patient, you already know this, but some people just stumble on this blog wondering what the heck I am talking about, so this blog post is for them:
Research Estimates 3 to 8 Million Women Have Symptoms of “Interstitial Cystitis”
Millions bounce from doctor to doctor, desperate for answers. They suffer with painful urination, race to the bathroom 20, 30, even 60 times a day, and grieve an eroding quality of life, which often strains intimate relationships. Frequently misdiagnosed as having chronic urinary tract infections or overactive bladder, these patients try everything from antibiotics to antispasmodics with no success. When those treatments don’t work, they search for another doctor and start over. The “lucky” ones are those who find a doctor who knows what these symptoms actually mean. Despite their condition, many patients actually feel a sense of relief to learn their disease has a name—interstitial cystitis, also called IC or painful bladder syndrome.
The main symptoms of IC are frequent urination, an unexpected urge to get to a bathroom immediately, and pelvic pain.
The pain may or may not be perceived as coming from the bladder. For unknown reasons, there is painful inflammation and sometimes ulcers in the bladder lining. Patients feel like they have a bladder infection all the time, but the urine does not show bacteria if cultured. The treatments vary, however dietary changes can make a huge difference in symptoms. Patients often become frustrated since treatment is not an exact science and may require months of trial and error.
There is reason to be optimistic, however. At the recent American Urological Association meeting in Chicago (April 2009), scientists gathered to share research on the enigma that is called IC. Not only are the researchers closing in on a possible cause, they are sharing the development of treatments that have the potential to help millions of people. Much of this research is based on what IC patients themselves have told us, of course. For years, IC patients were insistently and consistently reporting that caffeinated beverages, tomato products, spicy foods, and acidic fruits increased their symptoms. Now, thanks to the work of Robert Moldwin, MD, and Barbara Shorter, PhD, RD, we have research to support what the patients have told us all along.
If you have been diagnosed with overactive bladder and the medications have not helped, you may need further evaluation to determine if you have IC. If you are experiencing repeat “urinary tract infections” it is important to get a urine culture, not just depend on the in-office dip tests.
The presence of bacteria usually requires the use of antibiotics. If the culture is negative, it is important to see a urologist who specializes in bladder diseases. This doctor should ask specific screening questions, may put a potassium solution in the bladder to check for a reaction, and may order an outpatient procedure called a “hydrodistention” which expands the bladder to the degree that the urologist can get a good look at the bladder lining.
As mentioned previously, dietary modification is one of the key treatments; in fact, over 85% of IC patients’ symptoms improve with dietary modification. Ironically, IC patients should QUIT drinking cranberry juice, which can make IC symptoms worse. Most importantly, IC patients need to be “patient” with other treatments. Many IC medications and supplements can take months to work. Others may provide relief right away, but may cause temporary drowsiness. Some treatments may work for one person and not another.
As mentioned previously, dietary modification is one of the key treatments; in fact, over 85% of IC patients’ symptoms improve with dietary modification. Ironically, IC patients should QUIT drinking cranberry juice, which can make IC symptoms worse. Most importantly, IC patients need to be “patient” with other treatments. Many IC medications and supplements can take months to work. Others may provide relief right away, but may cause temporary drowsiness. Some treatments may work for one person and not another.
The good news is that researchers are slowly putting the pieces of the IC puzzle together. There is hope that since the number of IC patients seems to be several times larger than ever reported before, that more money will be dedicated to finding a cause and better treatments.
Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate
For Both Interstitial Cystitis and Overactive Bladder Patients
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!**
Interesting & informative article. I love reading about conditions where nutrition is a key form of treatment!
ReplyDeleteIt took us a long time to get to this point, Emily, but the research now supports diet and now the American Urological Association recommends diet as a first line treatment for interstitial cystitis/painful bladder syndrome. Now we need more dietitians to learn about it!
DeleteGreat to know this is here as a resource. I had someone just recently approach me to ask about IC and was able to refer her to your site!
ReplyDeleteThank you so much. We need to get more information out there on this disease. 12 million people have this and every one of them needs a dietitian.
DeleteWow very interesting! I will definitely direct future clients with this condition to you and these wonderful blog posts. Thanks for all of the information!
ReplyDeleteThank you.
DeleteInteresting info!
ReplyDeleteSometimes you learn the hard way!
DeleteYou're such a great resource Julie! I never knew much about IC. Thanks for sharing!
ReplyDeleteYou are welcome, Jessica. Thanks for reading!
DeleteThanks for sharing Julie! Great information!
ReplyDeleteThank you Lindsey!
DeleteThank you for providing a great resource. Very informative!
ReplyDeleteThank you, Allyson.
DeleteHappy to hear there is progress in the research and treatment of IC -- thank you for sharing!
ReplyDeleteWe have had a lot more research on the interstitial cystitis diet in the past few years. It takes some time, but we are getting there. The IC epidemiology studies are important also.
DeleteWhat a great resource. I'm bookmarking this article so that I have it for quick access in case I run into anyone that could need it!
ReplyDeleteHi Chrissy, you can also visit www.ic-diet.com for other resources for bladder disease patients.
DeleteInteresting article. Always looking for good resources on various topics and conditions for future reference!
ReplyDeleteI appreciate your comments Kara. When I worked as an outpatient dietitian I saw two interstitial cystitis patients and all I could think was, "How can I help them with this crazy diet?" It is much more defined now and the more dietitians learn, the more these patients can be helped. ~Julie B
DeleteVery important topic and fascinating about the cranberry juice which everyone assumes is healthy for the bladder.
ReplyDeleteHi Lauren! YES, that is where a lot of dietitians lose these patients. Just tell them to drink more cranberry juice. That is literally the "acid" test of whether a dietitian knows what they are talking about. Hopefully over the next few years more dietitians will learn about the IC Diet.
DeleteGreat information. Learned so much about IC. Will bookmark for future reference!
ReplyDeleteThank you for visiting, Nazima. I has always taken patients a long time to get diagnosed, but now with this overactive bladder business some patients are still getting stuck in the medical quagmire. One good piece of news is that overactive bladder patients can benefit from applying the same dietary modifications.
ReplyDeleteThanks for sharing, Julie- this is really helpful information!
ReplyDeleteThank you for visiting, Shannon. For more information, please see www.ic-diet.com
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