Monday, November 29, 2010

Bringing the Ho-Ho-Ho Back to the Holidays

Christmas decorationHas the ho-ho-ho gone out of your holiday experience? Does having a chronic illness like interstitial cystitis seem to overpower the joy you used to feel at this time of year? All of us have our ups and downs. However, if you have been feeling down more than upbeat lately, you may consider being evaluated for depression. In fact, if you have five or more of these symptoms lasting two or more weeks, it is critical that you seek medical attention:
  • Feelings of sadness or emptiness
  • Loss of interest in most activities
  • Appetite or weight changes
  • Feelings of mental/physical slowness or agitation
  • Feelings of worthlessness, helplessness, or guilt
  • Feeling tired and/or difficulty concentrating
  • Sleep disturbances (sleeping less or more than usual)
  • Thoughts of death or suicide (For information about suicide prevention call 911 or 1-800-784-2433--the National Suicide Prevention Line)
Sometimes it is too easy to blame these symptoms on the fact you have a chronic illness like painful bladder syndrome, but it is important to be appropriately evaluated so that you know for sure. If you learn that you have depression, you will want to follow through with your doctor’s treatment recommendations, which may include medication and therapy. Not surprisingly, you will play a major role in how fast you feel better. There are many things you can do to take care of yourself, whether you are receiving treatment or you have early signs of depression and want to prevent it from getting out of hand.
  • Foster friendships and a social support network. Positive friends and family members can be a source of joy and support in anyone’s life but especially if you are struggling with self-doubt.
  • Join a self-help group. In person or online, groups such as these where people are facing similar problems can provide a safe place for sharing.
  • Exercise regularly. Aerobic exercise like walking or biking is particularly helpful for improving mood. Yoga and tai chi can help reduce stress.
  • Reactivate your life. What enjoyable activity have you dropped because you didn’t feel up to it? Don’t wait. Pick it up again now.
  • Write it down. Some people find that writing in a journal is a good outlet for negative emotions .like anger, fear, and frustration.
For more information, visit the WebMD Depression Information Center.


Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 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 


 **Please SHARE using the links below!**

Monday, November 22, 2010

Getting Energized Despite Chronic Illness

Do you contantly hit the snooze in the morning?Many patients wonder how in the world they can increase their energy when they have a chronic illness like interstitial cystitis. As if living with a chronic disease isn't tiring enough, IC patients have to "give up" caffeine and other stimulants too.
There are many things that can contribute to fatigue when you have a chronic condition like interstitial cystitis. Obviously, the quality of sleep is compromised if you are getting up several times at night to use the bathroom. In addition, many of the medications patients use to treat a painful bladder, including narcotics, anti-anxiety medications, and antihistamines cause drowsiness. Even the mental activity of navigating all the changes associated with being diagnosed with a chronic illness can be exhausting. 

How does a person deal with such a situation? Trust me, it is far from hopeless. Here are some suggestions: 

  1. Work with your physician. Once you rule out any other medical conditions, ask if you can take less medication that contributes to drowsiness if you can get your symptoms under control by modifying your diet.
  2. Nurture a positive attitude about giving up caffeine. Remind yourself that this is something you can control, unlike many other aspects of the disease.
  3. Establish regular sleep habits. Most people, sick or not, require at least 8 hours of sleep at night. If you know you will spend a portion of that in the bathroom, plan to “sleep” even longer.
  4. Take mini-naps during the day if necessary. Find a quite place to lay your head down for a few minutes. Set the alarm on your cell phone for 15 to 20 minutes. When you consider that you are much more alert after these mini-naps and accomplish more, the time is worth it.
  5. Eat smaller, well-balanced, low fat meals. High calorie meals can slow even the healthiest person down as the body diverts energy to the process of digestion. Have a handful of nuts or carrots as an afternoon snack instead of a handful of sugar cookies.
  6. Drink plenty of water. One of the first signs of dehydration is fatigue. You may have kicked the caffeine habit, but have you developed a water habit?
  7. Use a small personal fan in your workspace. The cool air movement can keep you feeling more alert.
  8. Expose yourself to bright lights. If you have a choice, move your desk near a sunny window. If that isn’t possible, ask to have brighter lights installed in at least part of your workspace.
  9. Use citrus scented hand lotions. That burst of citrus as you moisturize your hands can wake you right up! I have citrus lotions all over the place, in my home, in my car, and in my purse. You can find them in specialty stores like Bath and Body Works, Body Shop (try the Bergamot), and William Sonoma. Lotions with a strong minty scent work good too!
  10. Watch your posture. Sit up tall! Don’t make your lungs and heart work harder than they have to. Just sitting tall can give you the feeling of having more energy.
  11. Get regular exercise. One of the first things we are tempted to give up when we are tired is exercise, when that is the opposite of what we should do! As you make the rest of your body stronger, it becomes more efficient at accomplishing everyday tasks. In fact, people who are fit often report needing less sleep than their out-of-shape neighbors do.
  12. Finally, find a way to stimulate your funny bone. Many times when we live with a chronic illness, we forget to enjoy some of the simpler things in life. Watch funny television shows and movies instead of draining yourself with emotional dramas. Subscribe to a joke of the day to great you each morning in your email. Find an excuse to laugh every day!

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 For More Diet and Lifestyle Modifications:

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!**

Monday, November 15, 2010

Life Interrupted: “Gotta Go” Feeling Could Be Sign of Painful Bladder Condition

Are you going to the bathroom more frequently?
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.

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

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 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!**

Monday, November 1, 2010

IC Diet Study: More Validation for the IC Diet


Can an IC patient eat watermelon?
Recently a group from Tampa, Florida announced the preliminary results of their research into diet and IC. The study actually validates once again the connection between diet and the symptoms of IC and PBS patients. The preliminary abstract also reaffirms that most food items don't bother IC patients and when you look at the list of foods that they are mentioning, it parallels beautifully what patients have told us for years. Good work!

HOWEVER, I do have a couple of cautions for patients who are reading these preliminary results that are very important to mention here about this article:
  1. Some headlines are actually saying that because of this study, IC patients don't need to be so strict about their diet. When you hear this and it seems contrary to what you know personally, it is good to ask some questions. For example, what are they benchmarking this statement on? Are they talking to newly diagnosed patients? Are they talking about patients who have been afraid to eat for years and thus, they have limited themselves to rice and pears? Are they talking to patients with mild IC or throwing everyone into the pot? Patients with IC are all different and we need to recognize that individuality first and foremost when we talk about any treatment including diet. For years we have been working to liberalize the IC diet, and I think we did a great job last fall when we standardized the IC Food List, but be careful when you see blanket statements made when new research is published. Right now, all we have is an abstract, not the full article. I just hate to see anyone take this one statement and liberalize their diet to the point where they put themselves in a flare.

  2. Be sure you look at where they are getting their information. At this point we don't know yet how they filtered their sample. Will there be some worry that the group of people who took the survey already had information about the IC diet and that influenced the answers to the questions they were asked?. In a case like this, a good study will either include people who did not have a lot of diet information and were just relating their experiences. Again, I don't know if this was considered in the study or not until I see a fuller version of the article, but it is something to keep in mind.

  3. I understand the Prelief and baking soda comments, but where are the cautions? Prelief is a wonderful product made by people who have put a lot of thought into it, and when it works, it works great.......but it doesn't work for everyone. I wish it had worked for me, but after spending hundreds of dollars on it, I came to the conclusion I was not one of the lucky ones. I still recommend it to new patients to try, and as IC supplements go, it is safe and pretty inexpensive. But if it doesn't work for someone, there is no reason to keep trying.

    As for the baking soda, wow.............that is loaded, in my estimation. Baking soda may work for a day, or two, or maybe three, but eventually, it begins to backfire and the pain gets worse. I do not know exactly why this is so, but my suspicion is that you have bombarded the body with so much alkalinity that it has to rebalance itself...which physiologically results in dramatically changing the pH of the urine.....ouch! (See my article on "Body pH vs Urine pH" if you want to know more about the physiology of that process.) Finally, I hope people understand this, but you never know how desperate someone is for help: People with high blood pressure or any other sodium sensitivity should NOT under any circumstances use baking soda to treat flares. It is a rescue treatment at best, not an everyday fix for eating IC trigger foods. I hope that this is also something that is mentioned in the article.


  4. Finally, why are blanket statements being made about different ethnic foods?I can only assume this was a way to streamline the information gathering, but patients need more specific information. To me, this is a bit like racial profiling. We need to be really really REALLY careful if we are going to make statements like that., Are generalizations really the best way to go here? First of all, there are IC patients all around the world, and they need to eat too. I have worked with people from India, Mexico, the Philippines, Italy, Japan, Russia, Spain, and China. Just like all American food isn't the same, neither is the food native to those cultures. It is the INGREDIENTS in foods that are the problem....not the country of origin. I can eat a lot of "Chinese food" as long as I can control the ingredients! (Yumm!) Let's talk more about how to adapt these foods rather than throw them out with the dirty dish water. My hope is that the full article talks about ingredients and not entire food groups or categories of food.
Ok that is my rant....and these are points to be aware of when you read ANY scientific article. Find out "who, what, when, where, and why" before you jump to any conclusions and just believe what you see in a headline. Science is a process and based on many many studies, not just one person's interpretation of one study.

To finish.........I want to give kudos to those doing this kind of research. We need it and it has been a long time coming. Now.....no more validation studies.....let's figure out WHY food is bothering our bladders and work on a cure! I want strawberries! :-)


Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 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 


 **Please SHARE using the links below!**