- What is interstitial cystitis/painful bladder syndrome? How is it treated?
- What is the history of the IC Diet?
- How does food affect an interstitial cystitis bladder?
- How soon will I know if something I consume is going to cause a flare?
- I am craving foods I cannot have. Do you have any suggestions?
- I admit it. I am addicted to caffeine. How can I quit drinking coffee?
- Can I take a multivitamin if I have interstitial cystitis?
- I am struggling to plan meals around the IC Diet. Do you have any suggestions?
- Are any forms of citrus tolerated by IC patients such as lemon oil or orange zest? I miss these flavors!
- I know I cannot drink cranberry juice, but can I take cranberry supplements?
What is interstitial cystitis/painful bladder syndrome? How is it treated?
Interstitial cystitis, or IC, is a chronic pelvic pain syndrome originating in the bladder. Other names for IC include painful bladder syndrome (PBS), bladder pain syndrome (BPS, used primarily in Europe), and hypersensitive bladder syndrome (HBS, used primarily in Asia). Men may also be diagnosed with chronic prostatitis (CP), which shares similar symptom characteristics with IC.
Patients with IC experience urinary pain, frequency, urgency, and nighttime urination that cannot be attributed to other causes. Although symptoms of interstitial cystitis can be confused with a urinary tract infection, urine from an IC patient does not show any bacteria when cultured. Sometimes I describe IC to people as the difference between a cold and allergies. A person may sneeze with both, but a cold is caused by a germ and allergies are not.
Patients with IC have a damaged bladder lining. Both the glycosaminoglycans (GAG) layer (the protective mucous coating on the surface of the bladder), and the urothelial layer (the skin-like barrier that transmits the messages of pain and urgency to the brain) can be damaged in a bladder causing IC symptoms. Glomerulations, or petechial hemorrhages, are often observed when a patient undergoes a cystoscopy under anesthesia, however, there is some concern that this damage could actually be caused by the procedure itself. Mastocytosis (almost like having hives in the bladder) is also a common finding. About seven to nine percent of patients actually have ulcerations in the bladder lining. New research is exploring the evidence of changes in the microbiome of the bladder lining. Investigations continue.
For diagnostic purposes, IC pain generally worsens as the bladder fills with urine and is relieved upon emptying the bladder. The pain may or may not be perceived as coming from the bladder. Many patients report that their pain is urethral, with varying degrees of pelvic pain. Other patients report back pain, shooting pain down the legs, and pain that is positional—for example, sitting in one place too long can trigger symptoms. In addition, both men and women report pain with intercourse. Men with IC often experience penile pain at the moment of ejaculation, whereas women might experience pelvic pain up to 24 hours after intercourse. Women’s symptoms may also increase premenstrually and at ovulation. IC pain can be visceral, which means that the pain signals travel to the same area of the brain where emotions are generated, so IC patients may appear to be highly emotional. In addition, IC pain can be neuropathic. Simply put, the person is in pain for so long that the nerves become damaged and begin to send more intense pain signals over time.
The other two cardinal symptoms are frequent urination and an unexpected urge to get to the bathroom immediately. Patients have reported having to use the bathroom up to 60 times a day. Sleep disruption from these symptoms is often a major cause of distress for patients.
Although it is valuable to know those clinical descriptions of the disease, no definition of IC is complete without the vivid descriptions IC patients use to explain how they feel. Often patients will describe the pain as if they have “razor blades or battery acid” in their bladders. Patients may be frustrated about the fact that they are fine one moment and doubled over in excruciating pain the next. Or, they will express defeat and resignation saying, “I may as well put a mattress in the bathroom; I go so often at night.”
IC patients often have other coexisting conditions including irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, vulvodynia, and various allergies, all suggesting a connection with the immune system may be involved in some way. Patients may also experience a variety of mood or mental health disorders related to their disease. People living with chronic pain often experience a tremendous amount of stress, suffering emotionally as well as physically. Their social lives may be disrupted because of their symptoms, and their intimate relations strained. The disability of many with IC is very real; nearly half of all IC patients in 1987 could not hold full-time jobs. Relationships can be strained, and many patients become depressed.
The good news is that a well-designed and individualized treatment plan can moderate symptoms for most IC patients. Oral medications, intravesical instillations (medications put into the bladder via a catheter), physical therapy, and a variety of self-help methods are the most common treatments. One of the most conservative treatments, dietary modification, is helpful for over 90% of IC patients—a claim that no other treatment can make to date. In fact, many patients can regain an acceptable quality of life by simply eliminating the most abrasive foods—coffee, tea, chocolate, alcohol, citrus fruits and juices, chili spices, tomato products, and soy products. The most important thing to remember is that there is always hope for healing, and many patients find a way to coexist with their fragile bladders, living normal, active lives.
What is the history of the IC Diet?
For the last few years something extraordinary and historical has been happening in the IC world. For decades, IC patients have been telling their doctors that what they ate affected their symptoms. Of course, in this age of “evidence based medicine” without evidence, the physicians and dietitians resisted embracing the concept.
But, just because there isn’t evidence, doesn’t meant something isn’t true! After a series of informal surveys, Dr. Robert Moldwin and Dr. Barbara Shorter (a dietitian) published a study that proved what patients had been telling us all along….that diet makes a difference.
In 2009, several groups in the IC community came together to standardize the IC Diet, combining both the historical and anecdotal evidence with the emerging research. Keep in mind that this is not the "ultimate answer" for IC and diet, but it is the best we have today and research continues to evolve. Don’t worry, we know that most IC patients have one or more of these conditions. Now, however, patients can safely follow the IC list and combine it with whatever their other conditions are rather than throw it all together in one pot. Finally, in 2011, the American Urological Association published the Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome which includes dietary modification as a first line treatment strategy. We have come a long way in the past 20 years. For more information, with research references, see Interstitial Cystitis.
How does food affect an interstitial cystitis bladder?
People often ask me why they need to avoid "acidic" foods if they have interstitial cystitis. The answer isn't as clear cut as you may think, however. I believe what has happened over the years is that it is convenient to "explain" an IC diet to someone quickly by telling them to avoid acidic foods in order to protect a painful bladder.
That, however, is also part of the historical resistance of doctors and dietitians to accepting a diet for IC. People who have studied biochemistry and physiology know just what you said, "acid in doesn't equal acid out." (An acidic orange juice forms an alkaline metabolite when digested, and the acidic cranberry juice forms an acid metabolite. There are many more interactions here, but you get the point.)
It isn't all about acid/alkaline, however when it comes to an IC bladder. There are other reasons why a food bothers us.
One is an allergic or inflammatory type response that kicks up the degranulation of mast cells. This can even be caused by stress. (Maybe you or someone you know has gotten hives when they were under a lot of stress...that is the mast cells of the skin going haywire, just like can happen in the bladder.)
The second way a food can affect the bladder is as a chemical reaction on the nerves - think about caffeine and MSG - both stimulate bladder spasms or frequency.
The third way is related to the acid/alkaline theory but isn't as clear as we would like it to be. Nearly everyone's urine pH bounces around all day long. The BODY pH needs to be kept at a fairly constant level or, simply put, we would die. So there are feedback mechanisms in our bodies to prevent wide swings of BODY pH. One of those feedback mechanisms is the urinary tract system. The BODY is kept at equilibrium by expending acidic or alkaline properties often through the urine. (see http://www.rnceus.com/ua/uaph.html for more information.) So as you go through the day, depending on what you consume, if you are exercising, or are under stress, your body is very hard at work trying to keep that pH steady. As a result, the URINE pH bounces around, as I said a bit ago, in an effort to maintain a steady BODY pH.
Now, the next step in this thought process is to remember that most people have healthy bladders and are not even aware that this is happening. In our cases, however, we have wounds in our bladder - everywhere from tiny hemorrhages to full blown Hunner's ulcers. Do you see where I am going with this?
If you had a cut on your hand, would you put it in a bucket of lemon juice (an acid product)? NO way, right? BUT, you also wouldn't put that wounded hand into a bucket of bleach (an alkaline product). It would hurt also! Neither of those liquids would hurt a healthy hand in the short term, right?
The same goes for your bladder....if the pH of the urine is bouncing around all day and you have wounds in your bladder, you are going to know it!
So, the acid/alkaline situation doesn't explain everything, but it can explain some of our symptoms. The pH issue, however, is not as easily controlled as one might think, nor should we rely only on pH as a way to control our symptoms. Some of the MOST reactive foods are the allergic/inflammatory and neurostimulatory properties of foods.
How soon will I know if something I consume is going to cause a flare?
The answer to this question is unfortunately vague. It depends on the person and the food. Some foods, like cranberry juice, will likely cause an IC flare within an hour. Other foods might not cause a reaction in small doses, but you could experience bladder pain or other symptoms when you increase the portion size. Some IC patients will experience an increase in bladder symptoms right before bedtime and others report a day or two lag between eating a food and the development of bladder pain. In most cases, however, if you are going to experience symptoms with a particular food, it will most likely happen within hours. Keeping an interstitial cystitis food and symptom diary can help you figure out how certain foods affect your IC symptoms. You can download sample diaries at Recipes and Resources.
I am craving foods I cannot have. Do you have any suggestions?
If you think about it, nearly everyone needs to change or improve their diet in some way. In fact, nearly 70% of the US population needs to lose weight! That doesn’t include those who are diabetic, have food allergies, inflammatory bowel disease, kidney disease, etc. IC is just “our thing.”
Of course, knowing this isn’t the same as actually living with a special diet, and there are some tricks you can use to deal with food cravings:
- Substitute. Instead of coffee, drink hot water with honey, warm milk with a dash of vanilla, or chamomile tea. Instead of chocolate, indulge in vanilla, butterscotch, or caramel deserts. Some people even find that blueberry juice is a great substitute for cranberry juice.
- Minimize portion size. If your symptoms are in control, you may be able to consume a tiny amount of a forbidden food—a Hershey’s kiss vs. a whole candy bar, a slice of tomato on a sandwich vs. spaghetti sauce, or a half cup of decaf, low acid coffee mixed with a half cup of milk vs. a 22 oz cup of java.
- Offset problems with acid reducers. Many IC patients find that they can eat forbidden foods occasionally if they also take Prelief or another calcium supplement like Tums with your meal.
- Set the timer. If you start to have a craving for something, put some time and space between yourself and the food. Set your timer for 10 or 15 minutes. Use this time to stretch, exercise, clean your desk, drink a glass of water, or even browse the internet for more IC friendly recipes. When the timer goes off, ask yourself if you still want to eat the food. Chances are the intensity of the craving will have passed. You may even forget why you set the timer!
I admit it. I am addicted to caffeine. How can I quit drinking coffee?
Interstitial cystitis/painful bladder patients should all avoid anything with caffeine. Trust me, it makes a difference. If you are having trouble getting off of your daily caffeine, start slowly by alternating your caffeinated beverage with a glass of water. After a few days, have two glasses of water between each caffeinated beverage. Eventually, you will be able to avoid caffeine entirely. Another method is to add more and more milk (and less coffee or tea) to each cup you drink.
Many companies make coffee and tea substitutes. Try chamomile, peppermint, and blueberry tea, but read the labels. Some herbal teas, even if they are labeled caffeine-free, may also contain black or green teas. Naturally, you want to avoid those. Some patients are able to drink low-acid, caffeine-free coffees, and many successfully switch to hot beverages made from grains. If your bladder is in a good place and you would like to test some of these coffees and substitutes, check out these brands: Puroast, Mommee, Pero, Cafix, and Twinings. Another option is to add a product such as Prelief or Acid Zap to your routine.
Can I take a multivitamin if I have interstitial cystitis?
Most people with IC have a terrible problem with multivitamins. One of the problems is that these formulas contain 100% or more of each nutrient, the quantity often too much for a body to absorb at one time. As a result, the vitamins spill into the urine with the potential to cause severe pain if the bladder is already irritated. One idea is to take a children’s formula (about 25% of the daily value for adults) to provide some supplemental vitamins to a person’s diet. Read the labels carefully and avoid any artificial colors, flavors, and sweeteners. Another option is to try an IC specific vitamin like Multiright, available on Amazon.
I am struggling to plan meals around the IC Diet. Do you have any suggestions?
Greg Anderson, athlete and cancer survivor wrote in his book, The 22 Non-Negotiable Laws of Wellness:
“Changing our diet is something we choose to do, not something we are forced to do. Instead of dreading it, try saying, “There’s another thing I get to do to help myself!”
When you think about it, Anderson is right. Changing what we eat can be much easier if we work on changing our attitude. Instead of looking at meal planning as a daunting task, consider it a challenge—something you CHOOSE to do to help yourself!
When making your meal plans, include everything you will eat: breakfasts, lunches, dinners, and snacks. The website Choose My Plate has wonderful tools to help determine which food groups to include in your plan. Once you have a basic plan, add foods from the “Bladder Friendly” column of the IC Food List. It is not necessary to plan fancy meals. New patients especially, find it easier to keep meals as simple as possible. It is much easier to sort out which foods may cause your symptoms to flare if you are eating simple foods without multiple ingredients. Other helpful hints for planning meals:
- Figure out meals a week or a month at a time. Although it may take some time up front, it can help keep you on track, minimizing the chances that you will make a choice at the last minute that can upset your bladder.
- Make menu planning a family affair. Consulting with other family members about menu choices can increase their understanding of your condition.
- Include foods that might be triggers for you, but that your family can eat. It was nearly a year before I realized that I had not been buying strawberries for my family just because I couldn’t have them!
- Use your menu to create a grocery list for the week. Often people walk through the supermarket waiting for inspiration to strike. Sticking to a grocery list can help you resist buying items impulsively, which can be tough on the wallet and the bladder.
- Recycle your weekly meal plans. Once you developed a few weeks of menus that you and your family enjoy, go ahead and reuse them. Save the grocery lists, too! Hospitals, schools, and nursing homes use this “cycle menu” approach to simplify planning.
Remember, eating healthy and avoiding foods that can trigger bladder symptoms is something you have within your control. You CAN do it! For more information on meal plans including sample meals and recipes, see Customizing the Interstitial Cystitis Diet: A Confident Choices® Book.
Are any forms of citrus tolerated by IC patients such as lemon oil or orange zest? I miss these flavors!
As you probably know, we always have to have the disclaimer, “Everyone is different,” but most IC patients tolerate the zest of citrus fruits. You can also find a large variety of citrus oils to try, many of them claiming to be natural. Remember, oranges and lemons are already natural, so that doesn’t necessarily mean natural citrus oil flavoring will be ok. It is always important to try a tiny amount of something first and assess how you feel afterwards. The good thing about the zest of citrus and the oils is that a tiny amount provides a lot of flavor! In addition, some IC patients can tolerate a small amount of low-acid orange juice.
PS: I love the "wake-up" feeling I get from using the lemon scented soap and hand lotion that I keep by my kitchen sink. Sometimes the scent of something can be enough to satisfy a craving!
I know I cannot drink cranberry juice, but can I take cranberry supplements?
Although it is tempting, I would not recommend cranberry tablets since most IC patients find they cause very severe bladder symptoms. If you are having symptoms of an infection, it is important to get your urine cultured to be sure you are not missing an infection. If you have an infection, be sure to take the prescribed antibiotics as directed by your physician. If you are trying to fight repeat infections, you might try D-mannose, a supplement which may have similar action to cranberry juice on the bladder.