Navigating the Internet for Health Information (Part 2)

As mentioned in Part 1, the volume of online health-related information is astounding. Almost anyone can research a health condition, nutrition, medications, treatments, or alternative therapies with a few clicks of the mouse. However, can you separate good information from that which is worthless or even potentially dangerous, especially about diseases like interstitial cystitis/painful bladder syndrome?

1. The first question to ask? Who owns the site and where do they get their funding? Financial resources can sometimes influence content. Is there a name, address, and phone number you can use to contact the website owners? Is the website information current?
2. Second, does the site or company defines the disease properly? In the case of IC/PBS, does the disease description match what you know about the disease? Is the website promising a "cure" or "quick fix" when there is none? (At one point there was an e-book being sold for more than the cost of my books, that basically said a low-salt diet could cure IC. Someone made a lot of money from some very desperate people giving them bogus information!)
3. Does the information on the website seem reasonable or does it "warn" against conventional treatments or products that you know to be helpful? In the case of IC, there isn't a one size fits all treatment plan. It is very important, in fact, to individualize treatment and it may take weeks or even months to put together a plan that works for you. Most quality health information sites are not afraid to link to other websites to provide the reader with as much information as possible to help themselves.
4. Does the website misuse information from research studies to make a point, or do they make overly-dramatic statements that are not supported by research? Or, does the study walk you through research studies to help you understand the realistic implications of the information? Also important, are the studies reviewed on the site "peer-reviewed" or published in "peer-reviewed" journals? Are the studies reproducible?
5. Does the website gear most of its information simply to sell a product or service, or does it seem to be well balanced with other information that can help a reader? Conversely, are the products or services recommended by other well respected sources such as the ICN and ICA?
6. Ask what the credentials are of the website's authors. How involved are they in the IC community as a whole? Are they medical professionals or do they consult with medical professionals about the material they publish? Do they "listen" to the patient community to help push the boundaries of what we know about the disease and its treatments?
7. Finally, remember, if it seems too good to be true, it probably is. Before making a health-related change based on Internet information, discuss it with your physician. Your doctor knows your condition the best and can help you evaluate your options.

PS: Some will argue that only websites that are .gov, .edu, or .org provide legitimate information. I will argue heartily against that! Consider WebMD, one of the largest, most respected health related websites online today. Then there are many .org websites that provide very questionable information. In the case of interstitial cystitis, the ICN is one of the most comprehensive websites on all things IC. And, I would hope that you find the information here and on www.ic-diet.com to be valuable! So it goes back to using your common sense!

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

Be Confident in the Information You Read Here!

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!**

Navigating the Internet for Health Information (Part 1)

When I was first diagnosed with interstitial cystitis, I was overwhelmed and immediately became isolated. No one I knew understood what I was going through, and I had no way to learn more about this insanity that quickly enveloped my life with doubt and uncertainty. Then, I discovered the World Wide Web and the isolation fell away as I learned that there were others in the universe that felt like I did.

Sorting out information on the internet can be tricky; however. It became obvious that many people out there just wanted to take my money and didn't have any more answers then I did at the time. On the other hand, quality websites eventually made themselves known. Visiting the Interstitial Cystitis Association and the Interstitial Cystitis Network online became a daily task for me, connecting me with information, and in the case of the ICN, a wonderful supportive group of people. I read, I learned, I "listened" to the wisdom of veteran IC patients who had navigated the journey before me. I could research different treatments, and be assured that the doctor I was going to was a very well respected physician in the IC community. I also got my first taste of the IC diet.

Most important, when my bladder was flip flopping at 3 am, I could log on to the ICN online support group and find someone there who would answer my questions or simply give me a cyber hug. It was amazing to me that those "hugs" made a difference. It didn't take long for me to realize I had some real friends out there in the universe. To this day I recall the friendship and kindness shown to me by Jill, Donna, Diane, Lesa, and my dear friend Yvette.

As a reminder, that was in 1998. Wow, over 13 years ago! Do you remember when you first got "online?" Did you have to wait 4 to 5 minutes for a Web page to load like I did? Did you count your minutes on AOL so that you didn't go over budget? Thank God it isn't like that for most people with IC today. Unfortunately, along with the good, there are many more websites and "resources" that a person has to wade through. What is good information? What is bad? How can you tell the difference?

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

Need Quality Information about Interstitial Cystitis Diet?

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!**

Am Interstitial Cystitis Bladder Safe Treat for the Holidays! Blueberry Coffee Cake

A new reader asked about the recipe for this blueberry "pie". It is actually a picture of Blueberry Coffee Cake! What a great recipe to keep handy for the holidays. It makes a great dessert also!

What IC recipes do you have that you would like to share? Post them as a comment here, or email me at NutraConsults@aol.com and I will share them with others! Take a picture if you can!

BLUEBERRY COFFEE CAKE

2 c. Bisquick
2/3 c. milk
2 tbsp. sugar
1 1/2 c. fresh or frozen blueberries
1 egg

Spray 8 inch square pan with cooking spray. Mix above ingredients except blueberries. Spread in pan. Sprinkle blueberries evenly over batter. Make sure frozen berries are drained very well. Put topping over berries.

TOPPING:

1/3 c. Bisquick
1/3 c. sugar
1 tbsp. cold butter
1/2 tsp. cinnamon

Mix topping ingredients until crumbly. Sprinkle over berries. Bake at 350 degrees for 30 to 35 minutes. Serve while warm.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com

Related:

Looking for More Interstitial Cystitis Meal Planning Ideas?

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 

Get the Flu from the Flu Shot?

Did you know you can't actually "get" the flu from the flu shot? If you experience some sniffles, low fever, or slight cough, that is actually your body working WITH the shot to rev up your immune system to protect you from something much much worse!

About 15 years ago, our family got the flu right at Christmas time. My middle daughter was the only one who got a flu shot as part of a well-child visit to the pediatrician (her birthday is in December!). One by one, starting with my husband and I, we both got very sick. The cough was unlike what I had ever experienced before and I finally had some idea what the word "delirious" meant. After using the toilet--interstitial cystitis doesn't take a break when the body is sick with something else--I woke up on the floor of the bathroom, evidently having passed out. My husband couldn't even get out of bed to help me, so I crawled back to our bedroom and put myself back to bed. Our oldest and youngest got sick as well. It took us three days to finish opening Christmas gifts because we kept stopping to rest. Our pictures are pathetic of that year. Pale and blotchy faces with dark rimmed eyes.

Ever since that year I have gotten my flu shot. I even stood in line for the H1N1 shot a couple of years ago; although now, H1N1 is included in the seasonal shot. I don't ever want to feel that sick again. I felt like I lost a month of my life.

But it isn't just ruined holidays and missed days of work. Every year nearly 38,000 people die from the flu. That doesn't take into consideration the People with chronic illness are at more risk for death from the flu than generally healthy people. Get your flu shot today, my friends!

For more information about the flu, the flu shot, and the most recent innovation, the flu mist, visit: http://www.cdc.gov/flu/protect/keyfacts.htm

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

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!**

Is It an Interstitial Cystitis Flare or a Urinary Tract Infection?

First, a quick story. The winter after I was diagnosed with interstitial cystitis, my husband and I drove our three kids from Michigan to Florida's Disney World for a vacation. After making all of the plans, packing everyone, helping my kids study for exams, etc. I was feeling horrible--my bladder felt like it was on fire with the pain. I basically chalked it up to a nasty IC flare because of the stress and busy-ness of packing, etc. Well, about half-way to Florida I got very, very sick. I was nauseous, trying not to stop every half hour to pee, and was near a mental breakdown because of the urinary pain. I was taking Pyriduim and narcotics by the clock.

We got to Ocala (about an hour from Disney), and I couldn't take it anymore. I HAD to go to the hospital. Ever the "good mommy" I made sure everyone was settled in a hotel with a pool BEFORE I drove myself to the hospital a few miles away. I was getting sicker by the minute and after the fact realized I had no business behind the wheel of the van.

When I got to the Emergency Department they could tell I was in rough shape (more than I knew myself) and took me right back. I had a male NP who examined me. He listened to everything I had to say, actually was interested to learn something new, then took it upon himself to call the Interstitial Cystitis Association to find out more. In my condition, I didn't want anyone poking around "down there," but I have to say he gave me the gentlest pelvic exam I ever had. When my labs came back, I was off the charts with a bladder infection. After twelve hours on an antibiotic I was feeling brand new and our vacation was not disrupted after that.

I couldn't believe that with everything I was experiencing I didn't recognize that I had an infection. I had hot foamy urine, I had a fever, I was nauseated, and as I said, almost mentally insane with the pain. I was also experiencing pain while urinating and when my bladder was empty, not just when my bladder was full. I was trying to be as stoic as possible about it all, so as not to ruin anything for the family. But, if I had waited any longer, I could have ended up with a kidney infection or worse.

I think the most important lesson I can pass on to you is to see a physician as soon as you think something is wrong and different than your usual bladder symptoms. You can buy UTI test kits to use at home, but even if the test shows a bladder infection, you must see a doctor to be prescribed the correct antibiotic. Don't be shy; ask for a "culture and sensitivity" to be done on your urine sample to be SURE that you are getting a drug that will most efficiently fight the infection you have.

I do think it takes some time to relearn our body's signals, but it can be done. Although I still get urinary tract infections occasionally, more often than not I catch them before they get too bad.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com

For more ways to help with UTIs and IC pain:

      

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

Interstitial Cystitis and Potassium

Are you concerned about ingesting potassium with interstitial cystitis? In the past, many patients and even clinicians thought that avoiding potassium was important to help IC patients control their symptoms. I am not exactly sure where this comes from, but maybe it started when doctors started instilling a potassium solution in the bladders of people suspected to have interstitial cystitis/painful bladder syndrome. If the solution causes the patient pain, the assumption is that the person has a damaged bladder lining--likely IC.

We can debate the process itself another day, but suffice it to say, if a person experiences the pain of a potassium sensitivity test for IC, I can hardly blame them when they are afraid to consume anything that has a significant amount of potassium in it.

If a person avoids all high potassium foods, however, they can quickly put their lives and wellbeing in jeopardy. Potassium is a vital nutrient for humans, and an essential part of the "electrical" system of the body, responsible for nerve and muscle health including those that keep the heart beating properly. Some IC patients, thinking they were doing the right thing by avoiding potassium rich foods, have even ended up in the emergency room with erratic heart beats. (I actually have to take a potassium supplement at times to prevent going too low!)

In addition to muscle and nerve function and cardiac health, potassium is a critical element in the prevention of osteoporosis, hypertension (high blood pressure), and strokes.
Less serious, but definitely warning symptoms of low potassium include weakness, fatigue, muscle cramps, and constipation.

IC Safe High Potassium Foods

Most interstitial cystitis patients have some food sensitivities to fruit, including bananas and oranges which are considered good sources of potassium. The good news is that other high potassium foods are generally well tolerated by those with a painful bladder:

• Avocado

• Nuts and seeds

• Legumes, in particular white beans

• Potatoes and sweet potatoes

• Milk and other dairy products

• Whey protein

If you suspect that your potassium is low, or you are uncertain about how much potassium you should consume, your doctor can perform a simple blood test to find out what your current levels are.

For more information: Food and Nutrition Magazine: Potassium

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

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!**

Interstitial Cystitis: How Food Can Affect a Painful Bladder

Before I wrote the first version of Customizing the Interstitial Cystitis Diet, one concept I had to work around--delicately I might add--was the idea of avoiding acidic foods. In the early years, when interstitial patients were teaching other patients with painful bladders, it was often convenient to"explain" an IC diet to someone quickly by telling them to avoid acidic foods. Interstitial cystitis support groups often came up with their own version of the IC diet to distribute to their members.

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 that "acid in doesn't equal acid out." (An acidic orange juice forms an alkaline metabolite when digested, and acidic cranberry juice forms an acid metabolite. In fact, the whole equation changes when you start to combine foods in a meal. Therefore, the acid/alkaline story is incomplete at best when it comes to triggering painful bladder symptoms, and we know that there are other reasons why a food bothers the sensitive bladders of people with IC.

One is an allergic or inflammatory type response that kicks up the degranulation of mast cells in the bladder. 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 result of mast cells in the skin going haywire, just like can happen in the bladder. (See Interstitial Cystitis: Allergies and Diet to learn more.)

The second way a food can affect the bladder is via a chemical reaction with the nerves. Think about caffeine and MSG—both stimulate bladder spasms or frequency. Most IC patients report that they know they have had something with caffeine in it within a few minutes. (See Is MSG Hiding in Your Food to learn more.)

The third way is related to the acid/alkaline theory but isn't as clear as we would like it to be. To begin with, even a healthy person’s urine pH bounces around all day long. The body pH, however, needs to be kept at a constant level—7.3 to 7.4 pH—or, simply put, we would die. Conveniently, 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 pH is kept at equilibrium by expending acidic or alkaline properties often through the urine. Therefore, 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 stated previously, in an effort to maintain a steady body pH. (See Body pH vs. Urine pH to learn more.)

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. However, an IC bladder is a wounded bladder. Regardless of whether this is from tiny hemorrhages or full blown Hunner's ulcers, these irritated areas have penetrated the protective layers of the bladder down to the nerves. 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)? I can already hear you saying, “No way!” But, you also wouldn't put that wounded hand into a bucket of bleach (an alkaline product). That would hurt too! However, neither of those liquids would hurt a healthy hand in the short term. 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 story of an IC diet may explain some of the symptoms, but not all of the effects food can have on a painful bladder. 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.

Finally, an area that needs more attention from researchers is how eating an IC friendly diet can potentially affect the outcomes of other medical treatments. It only makes sense that if you are trying to rebuild the bladder lining, that you would want to make the bladder environment as hospitable to healing as possible. I believe that one way to accomplish this by reducing the intake of foods that assault the bladder.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

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!**