Saturday, April 18, 2009

Developing Your Interstitial Cystitis "Elevator Speech"

Pitching interstitial cystitis to the media
Did you all see the segment about interstitial cystitis (IC) on The Doctors TV Show on April 16, 2009? It was certainly a start and gave more attention to IC than any national program has in a long time. We need to remember that it is topics like this that OTHER shows pick up on and the ball gets rolling very quickly.

Actually, we all should think about what we might say if we ever get the opportunity to discuss this with the press or with a show like The Doctors. They call it the "elevator speech" in the business world....what can you tell people about something in the short time you have with them in an elevator car ride. Here are my suggestions:

1. Give people a visual right away.

Mention "interstitial cystitis" but quickly say it is also called IC, bladder pain syndrome, or painful bladder syndrome. If you have ANY influence over production, suggest that they put the words "interstitial cystitis," "IC," and "Painful Bladder Syndrome" in some sort of text visual. You can also say that approximately two million people have the disease--mostly women, but men and children get it too. (Edit 6/29/11: The most recent epidemiology numbers estimate 8 to 11 million people with IC in the US.)

2. Briefly tell the three main symptoms.

For example you can say, "The main symptoms of interstitial cystitis are frequent urination, an unexpected urge to get to the bathroom immediately, and pelvic pain. The pain may or may not be perceived as coming from the bladder."

3. Keep the concept simple.

For example, "For unknown reasons, IC patients have painful bladder inflammation and sometimes even 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."

4. Talk about diagnosis without instilling fear.

We don't want to stir up any more worry or frustration than a bladder patient may already be experiencing. For example, "If your urine cultures are negative, you may want to seek the help of a urologist who specializes in bladder disorders. They will likely ask you a series of screening questions, may put a potassium solution in your bladder to see how you react, and may do an outpatient procedure called a hydrodistention to get a better look at your bladder lining and to rule out any other bladder disease."

5. Be very general when discussing treatments.

It is too hard to get into everything, but following an diet is something that can help someone right away and is important to mention. For example, "The treatments for IC vary, however dietary changes can make a huge difference in symptoms." Or, "IC patients need to be "patient" in order to find a combination of treatments that can help them." You can also mention the negative effects of cranberry juice if you have time. This often gets someone's attention since they usually expect the opposite.

6. Refer people to ICN and ICA for more information.

People like to look things up themselves and the organizations can give them a lot more information than any of us can in a short period of time! Again, if you have any editorial control, ask that they give the full names of the organizations, their phone numbers and websites.

7. Finally, project an image of "hopefulness."
So many times we want to tell the world how awful IC makes us feel, but honestly, that isn't as helpful as telling people, "IC can be confusing because a person with can be very sick and not look like it. However, the good news is that they CAN get better! It just takes some time!"

All of these are quick sound bites that can even work with family and friends. We really cannot tell EVERYTHING we know about interstitial cystitis, but we have to remember to point people in the right direction, since that is the most important. I hope that I can remember this if I am ever presented with the opportunity to talk about IC to the media again!!!



Author, Speaker, Patient Advocate

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



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Saturday, February 28, 2009

Interstitial Cystitis: Are You An Extrovert or an Introvert? Are You Sure?

Interstitial cystitis: what's behind the mask?IC patients often ask me about personality changes they seem to experience when diagnosed with a chronic illness. Most people think that being an introvert means being shy and reserved while being an extrovert means a person is charismatic, a great communicator, in short, terrific with people. There are many people who would classify me as an extrovert based on those definitions, when in reality, I am an introvert. Yep, even I had a hard time understanding that one at first.

You see, being an introvert or extrovert is all about how you regenerate your energy stores and whether you gain or lose energy around other people. Introverts are energized by spending time alone and are drained very quickly by large gatherings and when they are exposed to massive amounts of stimuli (think action movies or amusement parks).

On the other hand, an extrovert thrives on these high energy events and may even become depressed and anxious when alone with only themselves as company for any length of time. These personality characteristics are actually thought to be hardwired, reflecting a person's individual reactions to the neurotransmitters dopamine and acetylcholine.

What does this mean to you? As someone with a chronic illness like interstitial cystitis, it is important for you to know what nourishes you and what depletes you.

If you are an introvert: Parties, high energy situations, and overstimulation will create great challenges for you and may even send you into an IC flare. It is important for you to discuss this with your family and friends so that they understand when you step away from the action it is not a reflection of them, but rather a deep seated need of yours for some quiet time. For example, you may actually feel increased anxiety when thinking about family gatherings. In these cases it is important to plan ahead. If these events are to last all day--for example a family wedding--arrange for small periodic breaks. Even if you never take advantage of the opportunity to escape, just knowing you have an exit strategy can be a relief. Stress management strategies can also help. Guided imagery, yoga, meditation, prayer, even three deep breaths can do wonders for an introvert's energy level.

If you are an extrovert: Having a chronic illness like interstitial cystitis can be isolating at times, which can really drain an extrovert's energy level. As an extrovert you crave a party atmosphere, high energy situations, and frequent interactions with people, but your physical condition may become a barrier at times. Talk to your family and friends and let them know your need to be with people even if you are not feeling well. Inviting other gregarious people into your world can refresh and renew your spirits. Other ways to boost your energy if you are not able to participate in social events include watching action movies or sporting events, and playing high action video games. Consider attending in-person support groups rather than spending a lot of time online trying to recreate the "fuel" of a social network.

Finally, no one is 100% introvert or extrovert. Although you will primarily identify with one or the other, in different circumstances you may be drawn more in the other direction. Just remember that spending too much time "stretching" how you are naturally wired can itself be a huge energy drain, so the best use of your talents and energy is to simply be who you are!

Author, Speaker, Patient Advocate

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



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Friday, February 6, 2009

Interstitial Cystitis Body pH vs Urine pH

Acid Alkaline Confusion
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.

For more information on the delicate pH of your body, see Cooper Clinic's article: Myth or Fact: Balancing Acidic and Alkaline Foods


Author, Speaker, Patient Advocate

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



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Thursday, January 29, 2009

Interstitial Cystitis: It's Not All In Your Head--Or Is It?

Pelvic and Bladder Pain
My daughter had surgery this week for endometriosis. It was her second surgery for a condition that causes her incredible pain and upsets her system enough to make her periods madly unpredictable.

She is doing much better today, but she said something that really bothered me. She said she was glad to have proof that it wasn't all in her head. It killed me to hear that; but unfortunately almost every person with pelvic pain has heard that line at least once in their quest to get a proper diagnosis.


The thing is, there is definitely a connection between a person's emotions/stress level and their IC symptoms. The science is called "psychoneuroimmunology" or PNI. That doesn't mean a person with IC is imagining their symptoms. Rather, when a person experiences heavy emotions or stress, a cascade of chemicals is released that causes dozens of physical reactions in the body. These chemicals actually serve a purpose; for example, they help a person faced with an emergency react quickly.


Unfortunately, these chemicals can do a lot of damage to our bodies if left unchecked. They can also increase the symptoms of various chronic diseases including interstitial cystitis.
The good news is that you can somewhat control the effects of stress on your body. Things to try include:

  1. Take three deep breaths. Fill your lungs completely with air then releasing it slowly. 
  2. Don't procrastinate on tasks you need to do. Procrastinating can cause an unnecessary increase in stress when actually doing the task can reduce it. 
  3. Engage in a hobby or learn something new. Giving your mind a pleasant diversion can be a great way to reduce the unwanted effects of chronic stress.
  4. Exercise. Take a walk, stretch, lift light weights.
  5. Pray or meditate. Connect with your spiritual purpose. Even yoga can help create a state of relaxation several times a day.
The thing to remember is that even though your disease isn't really "all in your head," there is an undeniable mind-body connection.

For more information about PNI and how emotions, hormones, and body chemistry are interrelated with disease states, check out these books:

  • Molecules of Emotion (Candace Pert's first book about PNI. A bit medical, but extremely interesting and really helps explain the body/mind connection.) 
  • Everything You Need to Know to Feel Go(o)d (Pert's recent book...much like Molecules of Emotion but easier to read. It also talks about her's and her husband's discovery of Peptide T, the closest thing we have for a cure for HIV/AIDS! Very very good!!) 
You can also read more about PNI at the American Psychological Association website: Psychoneuroimmunology

Author, Speaker, Patient Advocate

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



 **Please SHARE using the links below!**