Interstitial Cystitis Diet: Confident Choices

Overactive Bladder or Interstitial Cystitis?

2012-01-24T08:46:00.000-08:00

If you are like me, you cringe just remembering that "overactive bladder commercial" which showed the woman writhing in discomfort sitting in the courtroom with the jingle playing "Gotta Go, Gotta Go, Gotta Go!" From the first time I saw that OAB medication commercial, I was worried about women running to their doctor to get a pill; missing or at the very least delaying the true diagnosis of interstitial cystitis/painful bladder syndrome.

Let's face it, it is much easier to prescribe (and take) a pill rather than go through the diagnosis process for IC/PBS. I even wrote a blog post about this concept back in 2010: (See "Life Interrupted: "Gotta Go" Feeling Could Be Interstitial Cystitis.) But OAB medications DO NOT traditionally work for IC, and some people take these pills for weeks or months missing out on the true cause of their frequency, urgency, and bladder pain. And until you get the correct diagnosis you are likely to miss out on some of the best treatments we have ever had for IC/PBS.

Then, I came across this incredible personal story from Health.com. In her story, My Overactive Bladder Was Due to Interstitial Cystitis, Diane Lang, whose original diagnosis was OAB, eventually discovered she had IC. Diane’s story reminds us that 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.

Eventually, Diane changed her diet and incorporated other lifestyle changes like meditation, pelvic floor exercises, and simple problem solving to help control her symptoms. The best part of Diane’s story, however, is how she learned to deal with the anxiety and uncertainty of her disease. I highly encourage you to read more of Diane's story at Health.com.

Listen to your body! If you have been diagnosed with overactive bladder, but your symptoms are not under control, ask your physician if you might have interstitial cystitis/painful bladder syndrome. You can also find some information from these websites:

Interstitial Cystitis Association

Interstitial Cystitis Network (also the Interstitial Cystitis Network Support Forums)

And my website: Confident Choices for Interstitial Cystitis Patients

For more information on the IC Diet, see The IC Food List

If you are not happy with what your doctor is telling you, either persist with that doctor or move on until someone can give you answers. Copy information from Diane's article or from these websites and take it with you. It is your body. You deserve to have answers.

Dancing Like a Star!

2012-01-17T08:36:00.000-08:00

From the beginning, I have been a fan of Dancing with the Stars where celebrities team up with professional ballroom dancers and compete for a mirrored, disco ball trophy. Along with millions of other faithful viewers, my husband and I follow the intense competition week after week as actors, musicians, and even retired professional football players demonstrate that with hard work and determination a person can transform from an awkward beginner into a graceful, skilled dancer. From the beginning, Dancing with the Stars conveyed the message that anyone can dance.

The show also demonstrates that dancing can be good fitness as well as good fun. Celebrity participants get visibly leaner and stronger as each week passes. Many even boast about their remarkable weight loss. Inspired by the show, viewers from Boston to LA are getting up from their sofas and starting to move to the music.

The fitness industry didn’t miss a beat in capitalizing on the popularity of the show. Dance classes of various forms are now big business at spas and gyms all over the country, and dance instruction and exercise videos are some of the hottest selling items on Amazon.com (including a branded Dancing with the Stars Latin Dance workout based on the show).

“While I dance I cannot judge, I cannot hate, I cannot separate myself from life. I can only be joyful and whole. That is why I dance.” Hans Bos

Of course, the best thing about dancing is that you don’t need professional instruction, a video, or any special equipment to do it! All you have to do is turn on some music that you like and get up and move! Trust your body and the music to tell you what to do. Bored with the treadmill? Get up and dance! Looking for an exercise that allows you to express your creativity? Get up and dance! Need an emotional or spiritual pick-up? Get up and dance! Afraid others will notice that you have two left feet? No problem; just lock yourself in your bedroom, pull the shades, and dance in the privacy of your home! You can even do your regular cardio and strength training workouts in time to the music.

Naturally, if it has been awhile since you have danced or engaged in strenuous activity, start slowly. Shimmy and shake your body for a few minutes at a time, maybe while you do the dishes or brush your teeth. Embrace your partner and slow dance to the radio or dance to silly songs like the Hokey Pokey. You can even get a great upper body workout by listening to classical or big band music and pretending to conduct the orchestra. The most important thing to remember is to keep moving and do something you enjoy.

For more information on IC and exercise see: Customizing the Interstitial Cystitis Diet: A Confident Choices Book

Take Action to Defeat Depression!

2012-01-10T08:00:00.000-08:00

(Note, if you are currently in crisis, call the Suicide Prevention Line at 1-800-273-TALK. You and your life ARE worth it!)

All of us have our ups and downs, and people with a chronic illness like interstitial cystitis can have more than their share. However, if you have been feeling down more than upbeat lately, you may consider being evaluated for depression. 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.

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.

Symptoms of Depression

Consult your physician if you have any of these symptoms lasting two or more weeks:

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 (Note, if you are currently in crisis, call the Suicide Prevention Line at 1-800-273-TALK. You and your life ARE worth it!

Need a New Year's Resolution? Clean Out Your Medicine Cabinet!

2012-01-03T07:54:00.000-08:00

The first part of the year is always a great time to clean up our home, but what about your medicine cabinet? I know as an interstitial cystitis patient myself, I have occasionally ended up with quite a collection of "left overs" in my cupboard. However, do you know the best way to discard outdated over-the-counter medications, supplements, and prescription medications that are either expired or left-over?

Fish on Prozac? Although you may have heard you should flush outdated and unused medications down the toilet, that is actually the last thing you should do. Scientists are finding more and more medications in the public water supply, both in municipal sources and natural sources like wells. And, yes, they have found fish with antidepressants in their system, raising the question of whether humans could be consuming these chemicals without knowing it!

Instead of flushing, experts recommend disposing of unwanted medications via your household trash using a thick, plastic bag that you cannot see through. (The FDA suggests mixing the medications with some undesirable food product like coffee grounds.) Wrap the bag securely in packing or duct tape to prevent people from harvesting the drugs from your trash or landfill. Alternatively, ask your pharmacist to see if they participate in a program to collect and safely dispose of outdated or unwanted medications. Because of safety concerns, only a couple of states allow the recycling of medications (the use by another person other than the person for whom the prescription was written).

Finally, don't forget the basics of keeping medications safe at home. Keeping medications out of the reach of small children, and consider locking up potentially addictive drugs like opiates and ADHD medications. Medications should only be used by the person and condition they are prescribed for. Finally, never discontinue a medication without the advice of a physician. If you discontinue antibiotics before the course is through, you could create a "super-bug" resistance in your body; and many drugs, such as anti-depressants, have withdrawal side effects that may need to be monitored by a physician.

Here's to a safe and healthy 2012!

Navigating the Internet for Health Information (Part 4)

2011-12-26T09:06:00.000-08:00

(This is the final part of a four part series on navigating health information on the internet. Here are the links to Part 1, Part 2, and Part 3).

As I was researching the information for this series, I found a great post written by Jill Osborne, President and owner of the Interstitial Cystitis Network addressing some of these same basic topics. A few of these things are a repeat of what I said previously, but I thought this was a great summary!

SUPPORT FORUM & FACEBOOK SURVIVAL STRATEGIES by Jill Osborne, MA

Here are some important survival strategies for ours, and any other, health related web communities, especially the wild wild west of Facebook.

A message board is a place for you to meet others. It is not, however, a substitute for medical care and consultation. While other patients may have strong opinions about therapies, tests and procedures, they cannot and should not give you medical advice. If you have any questions about your medical care, your physician is the most important person to consult with.
Be a cautious, educated consumer. Beware of any patients and/or websites (i.e. acupuncturists, herbalists) offering personal consultations and herbal products by phone who suggest that they can heal, cure and help you recover from IC. We have received a growing number of complaints from patients who feel that they have been bilked for hundreds or thousands of dollars. When in doubt, ask for proof, a research study that proves that their product or service works specifically with IC. If they haven't invested their own money in proving their claims, why should you?
Build your IC knowledge from multiple sources. Yes, patients can have excellent strategies to share but they can also be biased. There are several excellent magazines & books will help you understand IC therapies, pain care, diet and more. These are reliable and excellent resources for your IC information. We recommend the following:

* The IC Optimist Quarterly Magazine
* The IC Survival Guide by Robert Moldwin MD
* Confident Choices: Customizing the IC Diet by Julie Beyer RD
* Confident Choices: A Cookbook for IC and OAB by Julie Beyer RD
* A Taste of the Good Life: A Cookbook for an IC Diet by Bev Laumann
* Ending Female Pain by Isa Herrera PT
* Heal Pelvic Pain by Amy Stein PT
* IC Naturally by Diana Brady, MA, CNC
* The Better Bladder Book by Wendy Cohen RN
* The Happy Bladder Cookbook by Mia Elliot
* The Happy Bladder Christmas Cookbook by Mia Elliot

These are available for purchase in the ICN Shop (Disclaimer: The mission of Confident Choices is supported by a small commission if you purchase these books using the previous links.)

4. IC is very individualized. A small percentage of ICers may have extreme symptoms, while others have none. Most of us live comfortably in the middle. We all, however, have good and bad days. If someone replies to any of your postings in a negative way, please remember that it may have absolutely nothing to do with you. That patient may have had a horrible day, be in pain and be very frustrated.

5. Your personal safety is important. Do not give out your phone numbers or identifying information freely. Keep your on-line cyber friendships in perspective and do NOT get involved in their personal problems. You should never send anyone money or medications. It is not your responsibility to fix their personal, family, or financial problems. Always encourage patients who are struggling to call their doctors.

6. Under no circumstance should you libel or slander any physician, medical care provider or any ICN (facebook) user publicly. If you do so, you endanger yourself and possibly the ICN or facebook page "owner" to legal action. Remember, your experience with a physician may be dramatically different from others. Please do NOT attempt to influence the relationship between a patient and a medical care provider in a negative way.

7. ICers who feel better usually don't post that they are feeling good, yet there are thousands out there who are. Carry that thought with you as you read any sad or depressing messages. Don't let negative posts depress you. There are many more positive stories beneath the surface, if you just look for them. If you feel overwhelmed with what you are reading, take a break for a days and catch your breath. It is okay to leave and then come back. Remember, it's JUST people talking.

8. Your real life is always more important than cyberspace. Family and friends who can be physically with you should always come first.

9. Remember the on-line theme of "debate the message, not the moral character of its poster." If someone writes a post which you find hurtful, please contact ICN leaders or facebook immediately so that we can review the post and possibly delete it. Please help us keep the ICN forum (and facebook pages) a safe and supportive environment by reporting if anyone is bothering you.

10. Don’t let desperation drive you to rash choices. There are now many therapies available that can help you control and manage your symptoms. If you’re not where you’d like to be, start again with the basics. Are you following the IC diet? Have you tried bladder coatings, rescue instillations, antihistamines, antidepressants?? If not, read up about it, talk with your doctor and explore your options! There is hope!

Once again, thanks to my dear friend Jill Osborne for her tireless efforts in supporting IC patients around the world!

Holiday Breakfast! Spinach Quiche!

2011-12-22T06:28:00.000-08:00

Christmas and other holiday mornings can be crazy and even stressful with all of the fuss and fun. Prepare this simple quiche ahead. Pop in the oven when you are opening packages and soon the smells of breakfast will fill the house! Serve with fresh berries making Christmas morning savory, simple, and special!

Spinach and Feta Quiche

Ingredients

2 (10 oz.) pkg. frozen chopped spinach (thawed)
3 eggs
1 c. half and half (may substitute 1 c. evaporated skim milk)
1 c. crumbled feta cheese (4 oz.)
2 T. chopped green onions
1/2 t. lemon zest, if tolerated
1/2 t. salt
1/4 t. pepper
1 unbaked 9-inch pie shell (may use refrigerator or frozen dough)

Pierce bottom of pie shell and bake for 5 minutes at 350°F. Cool slightly. Raise temperature of oven to 400°F.

Drain spinach and press out all liquid. (This can be done easily between layers of paper towels.) Set aside.

Whisk eggs and half-and-half or milk in bowl. Add cheese, green onions, lemon zest, salt, and pepper. Pour into partially baked pie shell. Bake on middle rack, 400°F for 10 minutes, reducing oven temperature to 350°F for the last 25 minutes.

Broccoli and Cheddar Quiche: Substitute 1 cup frozen broccoli florets for the spinach and 1/2 cup shredded white cheddar cheese for the feta cheese

Navigating the Internet for Health Information (Part 3)

2011-12-20T08:30:00.000-08:00

We finished Part 2, talking about using your common sense. This goes for the "relationships" with the people you meet online too! I know, I know, this is the second decade of people having computers online in our homes and offices, and everyone should know to keep their private information to themselves when "talking" to other people online. Common sense, and following a few basic safety rules will keep you and your family safe as you navigate online.

Make a commitment to anonymity....at least at first. "Lurk" for awhile as you read online message board or facebook posts. Use a masked name and don't use your real picture until you are quite sure the forum is private. Although I used the nickname "Julie B" from the beginning on the ICN message board forum, I didn't disclose too much information right away. Now, of course, I am a semi-public figure because of the books I have written, but I am telling you to do as I say and not what I do. :-) Keep your personal email, phone number, address, and full name to yourself.
Try to assess the personality not only of the individuals but of the community. Look for positivity and encouragement, even though you know interstitial cystitis/painful bladder syndrome can be a very depressing situation. Remember, people who feel good are not as likely to post frequently, so there may seem to be many more desperate people than there really are in the community of IC patients.
Carefully research all information you read and advice you get from online forums. For example, I have seen too many cases of patients who whittled down their food choices to only a dozen foods because they refused to eat any food that any one person said gave them a flare. Learn from others, but always discriminate whether the information applies to you or not. Food sensitivities vary so much from individual to individual, that it can be dangerous to limit your food choices unnecessarily. For more guidelines on how diet can help, see the IC Food List.
Talk about potential treatments with your physician before you try anything on your own. Many patients, myself included, were clued in about various treatments and medications by other patients, but it is important not to act on your own. One person's medication could interact with another condition or medication that you have. It doesn't mean the information you gather is bad, just be sure to check with your physician before you try something.
Finally, although I don't want you to be afraid to make friends online, I also don't want you to forget the people in your "real" life. I have to say two of my best friends today are people I met way back in 1998 when I first found the ICN forums, but that is a rare situation that is likely precipitated by me being so active in the IC Community. Your family, your friends, your church community, your co-workers, and your neighbors are the people in your life on a daily basis. Real is always better than virtual. It really is.

Navigating the Internet for Health Information (Part 2)

2011-12-17T08:22:00.000-08:00

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?

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?
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!)
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.
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?
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?
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?
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!

Navigating the Internet for Health Information (Part 1)

2011-12-14T19:50:00.000-08:00

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?

A Treat for the Holidays! Blueberry Coffee Cake

2011-10-30T15:31:00.001-07:00

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.

Get the Flu from the Flu Shot?

2011-10-28T10:36:00.000-07:00

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

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

2011-09-07T19:15:00.000-07:00

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 vicodin 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 ER, 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 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.

Potassium and Interstitial Cystitis

2011-07-27T22:53:00.000-07:00

Are you concerned about ingesting potassium with IC? 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, 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, hypertention (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.

How Food Can Affect a Painful Bladder

2011-06-28T08:03:00.000-07:00

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 member.

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.

For more information see:

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

If you are a nurse, dietitian, or other nutrition professional, you can earn continuing education for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing.

Are you one of the “lucky” ones with both IC and IBS?

2011-04-10T22:36:00.000-07:00

Guest Blog by Patsy Catsos, MS, RD, Author IBS: Free at Last!

It is not uncommon for people with IC to also suffer from gas, bloating, diarrhea or constipation, whether formally diagnosed with IBS or not. There are changes you can make to your diet that may help. In the past, doctors and dietitians had one primary piece of advice for IBS sufferers: eat more fiber! However, as many of my patients can attest, fiber is not always the answer, and sometimes makes the symptoms of IBS worse. Other standard advice given far too freely includes “no dairy” or “low-fat” or “no red meat”. Recent studies support the idea that these one-size-fits-all diets are misguided, and that many IBS symptoms are actually triggered by certain carbohydrate foods in the diet. I know I am speaking to an audience that understands the reality of food sensitivities, and that symptoms can sometimes be avoided by limiting the presence of trigger foods in the diet.

I have read Julie’s wonderful book, Customizing the Interstitial Cystitis Diet, and I know that many of you are already working with numerous dietary restrictions. Rather than weigh you down with new ones, I’d like educate you a little bit about some common IBS triggers in the diet, known as FODMAPs* carbohydrates. These sugars and fibers have a few things in common: they are poorly absorbed, they are rapidly fermented by the normal bacteria that live in the gut, and they are capable of pulling in and holding extra fluid into the gut. Symptoms can result in those prone to IBS. Examples of FODMAPs are lactose, fructose, sugar alcohols, fructans, and galactans. Sorry for the technical terms; next, we’ll try to focus on foods. I’d like to offer a few recommendations about the foods on the IC Food List, from the FODMAPs perspective.

Beverages: Portions of juice should be limited to about ½ cup per meal.

Milk products: I highly recommend the use of lactose-free milk products for people with IBS. Even if you aren’t extremely lactose intolerant, if you are a heavy user of milk and yogurt it can contribute to the overall load of fermentable carbs in your gut. Lactose-free milk is widely available. Green Valley makes lactose-free yogurt that can be purchased at Whole Foods, but lactose-free yogurt is otherwise hard to find. Greek yogurt would be the next-best alternative. Lactaid brand cottage cheese and ice cream are available. Eggnog calls for a Lactaid pill. Beware evaporated and condensed milk, which are very high in lactose. Hard cheeses contain only a trace of lactose and may be well tolerated.

Meats, fish and poultry: No carbs in sight in this food group, so no worries. Oops, I do see one after all—whey protein powders can sometimes contain large amounts of lactose.

Vegetables: The IC Bladder Friendly and Try It vegetables I see that would also be the most IBS friendly are beets, carrots, celery, chives, cucumber, greens of all kinds, lettuce (not iceberg), olives, parsley, green peas, red bell peppers, white potatoes, radishes, rhubarb, winter squash, yellow squash, zucchini and watercress.

Fruits: This looks like a difficult area, because I see the more acidic fruits are used with caution for IC. These tend to be the same lower-fructose fruits I usually recommend for people with IBS. Best bets might be: rhubarb, bananas, melons, and small servings of raisins.

Grains: Although as a dietitian it pains me to say so, take it easy on the whole wheat and bran-laden breads and cereals. Products made from potatoes, rice, oats, corn and buckwheat tend to be well tolerated.

Sweets and Desserts: Stick to granulated sugar (cane sugar) and real maple syrup to sweeten your treats. Milk-based desserts are delicious and better tolerated when made with lactose-free milk.

Snacks: Nuts, carrots and celery, plain chips and Nature Valley crunchy granola bars work well. Carry some Lactaid pills for those unexpected milk shakes and ice cream cones!

Fats and Oils: All are low in FODMAPs, and should be well tolerated in small servings.

Spices and Herbs: All individual spices and mayonnaise are fine.

That concludes our brief tour at the intersection of eating for IC and IBS. For those of you who would like more information for yourselves or a family member, my book, IBS—Free at Last! (Pond Cove Press, 2009) is available on Amazon.com. My blog is www.IBSFree.net. They are devoted to a full-fledged, FODMAPs-restricted dietary program for people with IBS. The book provides menus, label reading advice, and food lists—all the tools to help each person figure out whether his or her IBS symptoms are aggravated by FODMAPS, and if so, how to manage it.

*FODMAPs stands for Fermentable, Oligo- Di- and Monosaccharides and Polyols.

For more information see:

IBS: Free at Last

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

Are You Looking for an Interstitial Cystitis Cookbook?

2011-03-20T09:28:00.000-07:00

As an interstitial cystitis or painful bladder patient, you may be wondering how to get more variety in your meals as you follow the IC Diet. Although you probably know I have a cookbook for IC patients, I don't have a problem promoting or discussing the other books. I think there is room for as many cookbooks as people will publish, and those few that are out there right now each have their own purpose. I will go in order of publication date.

1998 Bev Laumann's Taste of the Good Life: This book has a lot of gourmet type recipes that people with interstitial cystitis may enjoy if they really like to cook. The recipes also combine an IC Diet with the low oxylate diet, which may or may not be appropriate for an individual patient.

2007 IC Recipes: I am afraid I cannot recommend this one. The overall quality is poor with bad grammar, only a few, overly simplistic recipes, and it is even printed with odd pages thrown in from some long lost romance novel. It is almost as if it was thrown together without much thought.

Updated 2010 Confident Choices: A Cookbook for IC and OAB (over 200 recipes) This is my IC cookbook. I am an IC patient and also a registered dietitian, and the book is based on the standardized IC Food List that I helped create. I have divided the cookbook into chapters based on recipe type. There are also substantial discussions about nutrition, meal planning, ingredient substitution, a basic interstitial cystitis flare diet, and instructions for the IC elimination diet. I wrote the book so that people could open it and follow every recipe, even if they are only following the Bladder Friendly list. The book also includes a grocery list that you can personalize and is compact enough to fit in most purses so you can take it along with you in case you need to refer to it at the store. I also have 30 recipes in the Customizing the Interstitial Cystitis Diet book which also has a LOT of information in there about stress reduction, recipes, and has patient stories.

2010 Mia Elliot's the Happy Bladder Cookbook: Mia is an IC patient who saw a void and filled it beautifully! Many people are beginning to use e-readers, smart phones and even their computers to read their books, and the cookbook market is no different. Mia's book is searchable with a Table of Contents that allows you to click the recipe and view it. You can even download a sample and browse a couple of pages before you make the decision to buy it.

I welcome comments about the various cookbooks here. To read more about these and some of the best interstitial cystitis books, visit the Confident Choices Website.

PS: If anyone would like a copy of the table of contents for the Confident Choices cookbook, I would be glad to send it to you. Just email me at NutraConsults@aol.com.

Interstitial Cystitis: Allergies and Diet

2011-03-14T05:44:00.000-07:00

Guest Blog Post by ICAF Daily News

It is not unusual for an interstitial cystitis patient to be diagnosed with overlapping syndromes including food sensitivities and/or environmental allergies. Gluten, diary, pollen, animal dander, and dust mites seem to be the most common culprits.

Allergens cause the body to release a protein that we all know as "histamine. Histamine is typically a harmless substance that your body perceives as harmful. First, the body produces the IgE antibody, which then binds to the allergen. Then, the antibodies attach to one another and create a mast cell which then triggers the release of histamine. When this occurs, an excess amount of histamine becomes active in the body, resulting in bothersome symptoms.

The release of histamine (hist = because it's made up of histidine residues, amine = because it's a vasoactive amine) causes several allergic symptoms. 1) It contributes to an inflammatory response. 2) It causes constriction of smooth muscle.

Histamine can cause inflammation directly as well as indirectly. Upon release of histamine by an antigen activated mast cell, permeability of vessels near the site is increased. Thus, blood fluids (including leukocytes, which participate in immune responses) enter the area causing swelling. This is accomplished due to histamine’s ability to induce phosphorylation ( phosphorylation also regulates the activity of proteins, such as enzymes, which are often activated by the addition of a phosphate group and deactivated by its removal) of an intercellular adhesion protein (called (VE)-cadherin) found on vascular endothelial cells (the thin layer of cells that lines the interior surface of blood vessels). That is why histamine is known as being vasoactive (causing constriction or dilation of blood vessels).

Gaps between the cells in vascular tissue are created by this phosphorylation, allowing blood fluids to seep out into extracellular space (means outside the cell). Indirectly, histamine contributes to inflammation by affecting the functions of other leukocytes in the area. It has been suggested by Marone et al that histamine release triggers the release of cytokines and inflammatory mediator by some neighboring leukocytes (1999). These chemicals in turn increases the inflammatory response.

A urinalysis of an interstitial cystitis patient often show an over abundance of white blood cells (leukocytes) but no infection. These finding gave doctors a reason to take a closer look at symptoms that were more common amongst IC patients such as allergies.

What is A Mast Cell?

A mast cell (or mastocyte) is a resident cell of several types of tissues and contains many granules rich in histamine and heparin. Although best know for their role in allergy and anaphylaxis, mast cells play an important protect role as well, being intimately involved in would healing and defense against pathogens. Mast cells are very close to basophil granulocytes (a class of white blood cells) in blood. Two types of mast cells are recognized, those from connective tissue and a distinct set of mucosal mast cells. Mast cells are present in most tissues characteristically surrounding blood vessels and nerves. Mast cells play a key role in the inflammatory process. When activated, a mast cell rapidly releases its characteristic granules and various hormonal mediators into the interstitium (interstice is an empty space or gap between spaces full of structure). Mast cells can be stimulated to degranulate by direct injury (e.g. physical or chemical [such as opioids, alcohols, and certain antibiotics such as polymyxins]), cross-linking of Immunogloblin E (IgE) receptors, or by activated complement proteins. And we know that something we are sensitive to will cause our bodies to release a protein we all know as histamine.

In allergic reactions, mast cells remain inactive until an allergen binds to IgE already in association with the cell so, this tells us that the over abundance of mast cells/white blood cells in our bladders are obviously related to something we have an allergy to.

I was able to eliminate many of my symptoms by eating a clean diet and by cleaning up my environment.

Symptoms

Gastrointestinal:

canker sores in mouth, irritation of tongue, lips, and or mouth
vomiting, stomach cramps
abdominal distention
intestinal obstruction/bloody stool/colitis
malabsorption of foods
loss of appetite
diarrhea/constipation/painful bowel movements

Respiratory:

nasal stuffiness, runny nose, sinusitis
chronic cough, hoarseness, asthma (bronchitis)
middle ear trouble
pulmonary infiltrates
tonsil and adenoid enlargement

Skin:

rashes/atopic dermatitis/eczema/hives
seborrhea
hair loss
dermatitis herpetiformis (a gluten sensitivity)

Mood:

irritability/restlessness/hyperactivity
lethargy/ fatigue, "allergic tension-fatigue syndrome", mental depression
muscle pain
enuresis (bed-wetting)

Blood:

abnormal blood clotting
iron deficiency anemia
low levels of serum proteins
thrombocytopenia (low platelet count)
eosinophilia (allergy-related white blood cells)

Immune Complex Diseases:

rheumatoid arthritis
lupus erythematosus
periarteritis nodosa
polymyositis
scleroderma vasculitis
Henoch- Schonlein purpura
arteritis
occult intestinal bleeding gastroenteropathy
pulmonary hemosiderosis
orthostatic albuminuria nephrosis (nephrotic syndrome),
glomerulonephritis (see kidney disease)/ nephrotic syndrome

Allergies to gluten (gluten is found in high concentrations in wheat, barley, and rye): schizophrenia (a mental disorder, benefited in a few cases by avoiding gluten and dairy proteins), celiac disease (a bowel disorder), dermatitis herpetiformis (a skin disorder).

Dietary and Lifestyle Implications:

Allergies are responses to the harmful interaction of our immune systems with agents from the world around us. You can take two broad approaches to improve your condition. First, you can try to find and eliminate the substance that is causing the reaction. Second, you can make your immune system stronger and therefore more resistant to the harmful substance that is at fault.

Why some people are allergic and others are not is still a grand puzzle. Most scientists think that susceptibility to allergens may be due to an inherited predisposition. However, considerable evidence indicates that introducing certain foods (including cow's milk) too soon into an infant's diet, at the time when its intestinal tract and immune systems are still immature, may provoke responses in its tissues that will lead to symptoms of allergy later in life. Similarly, respiratory allergies and skin problems may be started at that tender age, when the infant's immune responses are unable to cope properly with the alien allergens.

The ultimate and best test for identifying the substance suspected of causing an allergy is to eliminate the substance (whether it is a food, or a pollen, or a chemical compound), and then to note if the symptoms disappear and the patient’s health is improved. Confirmation of the diagnosis is made by adding the offending substance back to the patent's diet or environment and observing if the illness returns. Don't overlook the obvious truth that elimination of the villainous allergen is also the ultimate-and only-treatment for "curing" the allergy.

Although countless substances can cause allergies, the foods he eats should be the first suspects that an allergic person should investigate. This is true for two reasons. First, whatever we eat is 100 percent within our control. Therefore, once the cause of a food allergy is identified, you can decide to remove that item from your diet. Second, suspecting your food is a good bet: foods represent one of our most frequent, intimate, and diversified contacts with our environment. Molecule for molecule, we interact with the components in our foods more than with air or water, and, obviously, the complexity of the substances we contact through our foods is many times greater than is that of compounds found in air or water.

Even allergic problems that on first impression seem to be due to agents other than those present in foods (pollens, for instance) can often be helped by a change in diet. The immune system has a limited capacity to handle allergens from many sources. If your immune system is overwhelmed and you can lighten its burden in any way (for example, by eliminating all dairy products), then you will be helped to tolerate the pollen grains swirling about you from the tree outside your bedroom window.

A dietary approach to managing food allergies is the safest and most sensible step you can take for testing and for treatment.

Eliminate entirely the allergens in your environment, whether in air, or drinks, or foods. Most people will resolve their food allergies by using the elimination diet. Start by eliminating the leading causes of food allergies, which are as follows: Animals products (including eggs), chocolate, nuts, shellfish, fish wheat, corn, citrus,tomatoes and strawberries.

The elimination diet allows you to eat the foods that are least likely to cause your allergic reaction. When you begin this diet, allow 14 days in order to completely clear the body of foods that were eaten before starting the diet. By the end of the 14 days, if their trouble was indeed due to their foods, most people will be relieved of symptoms.

(From Julie Beyer: For more information about using an interstitial cystitis elimination diet to determine your personal trigger foods, see the IC Diet Food List.)

References:
Schmidt D, Ruehlmann E, Branscheid D, Magnussen H, Rabe KF. 1999 Aug. Passive sensitization of human airways increases responsiveness to leukotriene C4. European Respiratory Journal 14(2): 315-319.

PLoS One. 2008 May 7;3(5):e2096. Mast cell-derived histmaine mediates cystitis pain. Rudick Cn, Bryce Ph, Guichelaar LA, Berry Re, KlumppDJ, Department of Urology, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States of America.

http://encyclopedia.thefreedictionary.com/Mast+cells

http://www.drmcdougall.com/medical_ailments.html

http://www.slideshare.net/elianacordero/guideliness-on-chronic-pelvic-pain-fall-euro-2008

FOR MORE INFORMATION SEE:

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

AUA Guidelines For The Diagnosis and Treatment of IC/BPS Released

2011-03-08T11:34:00.000-08:00

(Note from Julie: Jill Osborne, President and Founder of the Interstitial Cystitis Network recently posted this FANTASTIC summary of the new American Urological Association's Guidelines for the Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome. I asked her permission to reprint it here. To view the original post, visit the ICN forum. Thanks, Jill, for putting this into layman's terms!!)

The long awaited new clinical guidelines for the treatment of interstitial cystitis (aka bladder pain syndrome) were released by the American Urology Association (AUA) this month, offering what may be the most comprehensive clinical care article written to date in the USA. Solidly written, it offers new insight into diagnostic testing as well as a new, six stage IC treatment algorithm that can be used by physicians and patients as you consider your treatment and pain management plans.

Please help us share this vital new resource by printing both this summary and the guidelines out to share with all of your medical care providers.

What is an AUA Guideline?

With its mission of improving the knowledge of urologists around the USA, the AUA occasionally releases documents that assist urologists in the diagnosis and treatment of various urologic diseases. We are thrilled that they devoted almost two years to the creation of a new set of guidelines for interstitial cystitis. They are intended to instruct clinicians and patients how to recognize IC/BPS, make a valid diagnosis and evaluate potential treatments.

Why is it important?

Have you ever had a physician tell you that there were no treatments for IC or a family member who said that IC was a figment of your imagination? How about a physician who refuses to provide pain care? This document provides desperately needed education for medical care providers, patients, family members and the community at large.

Who drafted it?

In 2008, the American Urology Association convened a diverse panel of more than a dozen IC researchers and medical care providers to draft the guidelines. The effort was led by panel chairman Phil Hanno MD (Univ. of PA). An additional 84 peer reviewers reviewed the final document before it was approved by the AUA Board of Directors in January 2011. None of the participants were compensated by AUA for their work.

How was it created?

The panel performed a systematic review of IC research studies published from 1983 through July 2009. Using this research “evidence” as well as “clinical principles” and “expert opinions” offered by the panelists, the guidelines consist of 27 statements to guide a patient through diagnosis and treatment.

What’s their definition of IC/BPS?

They chose to use the definition first established by the Society for Urodynamics and Female Urology.

“An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.”

Is IC more than just a bladder disease?

Citing several studies which explored the related conditions found in IC patients, the authors explored several theories, one of which is “IC/BPS is a member of a family of hypersensitivity disorders which affects the bladder and other somatic/visceral organs, and has many overlapping symptoms and pathophysiology.” IC could be a primary bladder disorder in some patients and yet, for others, may have occurred as the result of another medical condition. The answer remains elusive.

Symptoms

The guideline emphasizes pain as the hallmark symptom of IC/BPS, particularly pain related to bladder filling. Pain can also occur in the urethra, vulva, vagina, rectum and/or throughout the pelvis. Urinary frequency is found in 92% of patients with IC/BPS.

Urgency is an often debated symptom because it is the primary symptom of overactive bladder, a condition often confused with IC. Yet, the authors make a critical distinction. Patients with IC experience urgency and then rush to the restroom to avoid or reduce pain whereas patients with OAB experience urgency and rush to the restroom to avoid having an accident or becoming incontinent.

Diagnosis - Hydrodistentions No Longer The Standard

The authors urge clinicians to perform a thorough history and physical examination of the patient. Symptoms should be present at least six weeks in the absence of infection for a diagnosis to be made. A physical examination of the pelvis should be conducted for both men and women and “The pelvic floor should be palpated for locations of tenderness and trigger points.”

Several conditions should be ruled out, including bladder infection, bladder stones, vaginitis, prostatitis and, in patients with a history of smoking, bladder cancer. Additional testing, however, should be weighed with respect to their potential risks vs. benefits. They offer “In general, additional tests should be undertaken only if the findings will alter the treatment approach.” Cystoscopy and urodynamics, for example, are to be considered if a diagnosis of IC is not clear. The authors do note that cystoscopy helps to rule out other conditions which can mimic IC symptoms, such as bladder cancer or stones.

The presence of Hunner’s ulcers on the bladder wall will lead to a diagnosis of IC however the finding of glomerulations on the bladder wall during hydrodistention with cystoscopy is often vague, variable and consistent with other bladder conditions, thus the panel suggests that “hydrodistention is not necessary for routine clinical use to establish a diagnosis of IC/BPS.” Hunner’s ulcers are described in an acute phase “as an inflamed, friable, denuded area” or in a more chronic phase “blanched, non-bleeding area.”

Pain Management

The guidelines are extremely proactive when it comes to pain acknowledgement and management. The authors offered “Pain management should be continually assessed for effectiveness because of its importance to quality of life. If pain management is inadequate, then consideration should be given to a multidisciplinary approach and the patient referred appropriately.”

Pain management can include the use of various medications, physical therapy and/or the relaxation of tense, painful muscles, biofeedback and a wide variety of other options. The guidelines encourage physicians to refer patients to other pain specialists if they are unable to provide an effective pain management strategy.

Treatment Goals & Principles

The improvement of patient quality of life is the key goal of therapy and consideration should be made for a treatments invasiveness, potential adverse events and the reversibility of a treatment. As a rule, the panelists suggest that treatment should begin with generally safe “conservative” therapies. If no improvement is found, “less conservative” treatments that may have more risk of side effects and adverse events can be explored. Surgical treatment is rarely suggested and only under specific circumstances because it is irreversible.

Grade A = have well-conducted clinical trials and/or exceptionally strong observational studies.
Grade B = have clinical trials that have weaknesses in their procedures or generally strong observational studies.
Grade C = have observational studies that are inconsistent, small or have other problems which could influence the data.

Specific treatment choices should depend upon the patients current symptoms, patient preference and clinician judgement. In addition, it is not unusual for patients to be using multiple, concurrent treatments. If patients have not shown improvement in their symptoms after multiple treatments, the panelists suggest that the diagnosis of IC should be revisited to determine if another underlying disorder (i.e such as pudendal nerve entrapment, endometriosis, etc.) could be present.

The guidelines emphasize the importance of evaluation and tracking a patients progress using a voiding diary and/or other surveys. They suggest that ineffective treatments be stopped after a “clinically meaningful interval.” Only effective treatments should be continued.

First Line Treatments - Should be offered to all patients

Patient Education - Patients should be educated about normal bladder function, what is known about IC and that multiple therapies may need to be tried in order to find symptom relief. 

Self-care - Patients should learn about and avoid specific behaviors that can either worsen or give them more control over their symptoms, including: water intake, diet modification to avoid irritating foods and common flare management methods (i.e. the use of heat or cold to relax pelvic floor muscles, the use of meditation or guided imagery to reduce muscle tension, the avoidance of some exercises, tight fitting clothing, constipation treatment, etc.)  (Julie's note: For more information on determining dietary triggers for interstitial cystitis/painful bladder syndrome, please see Customizing the Interstitial Cystitis Diet and Interstitial Cystitis: A Guide for Nutrition Educators.)

Stress Management - While stress does not cause IC, it is well known to increase IC symptoms and heighten pain sensitivity. The guidelines encourage patients to be aware of their overall stress levels. Stress management and/or better coping techniques should be practiced regularly, perhaps through use of stress management classes and/or the help of a counselor as needed.

  (Jill's note - A study released in early 2011 found that cats struggling with feline interstitial cystitis experienced a reduction of their symptoms and became healthier when their stress levels were reduced. This comes as no surprise to the vast majority of patients who have learned, first hand, that high stress can trigger an IC flare. Source: Stella JL, Lord LK, Buffington CA. Sickness behaviors in response to unusual external events in healthy cats and cats with feline interstitial cystitis. Journal of the American Veterinary Medical Association. 238; 67-73, 2011. doi: 10.2460/javma.238.1.67)

Second-Line Treatments

Physical Therapy - If experience and knowledgeable physical therapy staff are available, appropriate physical therapy techniques should be used “to resolve pelvic, abdominal and/or hip muscular trigger points, lengthen muscle contractures and release painful scars or other connective tissue restrictions.” Kegel exercises and exercises aimed at strengthening the pelvic floor are NOT recommended. Why? In pelvic floor dysfunction, muscles are often too tight and kegel exercises act to increase rather than reduce muscle tension.   (Jill's note - Two books are available which describe pelvic floor treatment in depth, including a variety of home exercises that can be used to resolve symptoms. Ending Female Pain by Isa Herrera PT and Heal Pelvic Pain by Amy Stein PT)  

Pain Management - “Pain management should be an integral part of the treatment approach and should be assessed at each clinical enoucnter for effectiveness,” the guidelines encourage. With respect to the use of pain medications, such as narcotics, the authors suggest that while the risk of tolerance and dependence is possible, only rarely does addiction occur. They offer “It is clear that many patients benefit from narcotic analgesia as part of a comprehensive program to manage pain.” Yet, they also state that the use of pain medication alone does not constitute a sufficient treatment plan. Pain management should be just one component of treatment. 

Oral Medication Options   

Amitriptyline (aka Elavil) has several studies reporting strong success in reducing IC symptoms yet side effects were highly likely with the potential of disrupting a patients quality of life, particularly sedation, drowsiness or nausea. Side effects were the primary reason why patients stopped using the medication. Grade B  Cimetidine (aka Tagamet) acts to inhibit acid production in the stomach. Two long term studies reported that 44% to 57% of patients experienced improvement in their symptoms with no adverse events reported, making this a viable second line strategy. Grade B

  Hydoxyzine (aka Vistaril, Atarax) had mixed research studies, one of which reported that 92% of patients experienced improvement yet those participating patients also had systemic allergies. Other studies found much more modest effectiveness (i.e. 23%). Adverse events were common and generally not serious. Grade C

  Pentosan polysulfate (aka Elmiron), the only oral FDA approved for IC, is the most studied medication currently use with five placebo controlled clinical trials. The results were clinical significantly (21 to 56% effectiveness). Roughly 10 to 20% of patients experienced side effects that were “generally not serious.” Pentosan may have a lower efficacy in treating patients with Hunner’s Ulcers. Grade B

Bladder Instillation Options

  DMSO (aka RIMSO-50), the only FDA approved bladder instillation for IC, is one of three considered a second-line therapy. Several studies were reviewed with various levels of success ranging from 25% to 90%. “If DMSO is used, then the panel suggests limiting instillation dwell time to 15-20 minutes” because longer dwell times are associated with more significant pain. Grade C  

Heparin instillations have been studied using various concentrations and treatment modalities (i.e. 10,000 IU heparin in 10cm3 sterile water 3x per week or 25,000 IU in 5 ml of distilled water 2x per week) with intriguing results. The 10,000 IU study showed a 56% improvement at 3 months, whereas the 25,000 IU study showed a 72.5% improvement at 3 months. No placebo controlled studies have been done. Adverse events were infrequent and apparently minor. Heparin is frequently combined lidocaine to create an instillation popularly known as a “rescue instillation.” Grade C  

Lidocaine instillations have also been studied in various dosages, cocktails and/or treatment schedules. The guidelines include several formulas for various cocktails that can be used, often including sodium bicarbonate, heparin, lidocaine and/or triamcinolone. Adverse events were typically not serious, earning this treatment option a Grade B.

Third-Line Treatments

Hydrodistention with cystoscopy may be considered if first or second line treatments have no provided relief. The panel ONLY recommends low-pressure (60-80 cm H2O) and short duration (less than 10 minutes) procedures to reduce the risk of bladder rupture. Grade C 

Hunner’s ulcers can be treated with fulguration (laser or electrocautery) and/or by injection of triamcinolone into the ulcer . One observational study reported 100% pain relief and 70% reduced frequency from 2 to 42 months after heat treatment. Laser studies showed similar effectiveness however, in both cases, ulcers may require additional treatment. One triamcinolone treatment reported that 70% of patients experienced a sustained improvement over 7 to 12 months. Grade C.

Fourth-Line Treatments

Neuromodulation is not FDA approved for IC treatment but has been used for the treatment of frequency urgency. Neuromodulation can occur at the sacral or pudendal nerve with studies confirming that pudendal stimulation appeared to provide greater symptom relief. Long term follow up data is not available. Grade C

  (Jill's Note - We’re stunned to see the panelists conclude that adverse events related to neuromodulation appear to be minor and this is the one area of the report that we strongly disagree with. A review of the FDA MAUDE database for adverse events reveals hundreds of severe complications ranging from MRSA infection, difficulty walking, device malfunction and, in the past two years, more than a dozen reports of fatality. We will be inquiring of the panel if they are aware of this federal adverse event data.)

  Fifth-Line Treatments

Cyclosporine A is an immunosuppresant that has been studied in two small trials with IC patients with solid results. One study compared CyA with pentosan and reported a 75% improvement in patients using cyclosporine, as well as a 50% decrease in frequency. The results of two additional studies found sustained pain relief that lasted one year or longer. Unfortunately, there is potential for more severe adverse events, including immunosuppression, nephrotoxicity, high blood pressure, increased serum creatinine and others. Grade C 

Botulinum Toxin (BTX-A) injections into the bladder may be considered if other therapies have not produced improvement, however “the patient must be willing to accept the possibility that intermittent self-catheterization may be necessary-post treatment,” often for several months. BTX is not appropriate for patients who cannot self-catheterize. Grade C

Sixth-Line Treatments

Surgical intervention, such as urinary diversion, substitution cystoplasty or cystectomy, may be considered for patients who have found no relief with all other therapies and/or have developed a severe, unresponsive, fibrotic bladder. “Patients must understand that symptom relief is not guaranteed. Pain can persistent even after cystectomy, especially in nonulcer IC/BPS.” Patients with small bladder capacities under anesthesia and the absence of neuropathic pain appear to have a better response to surgical treatment. Grade C 

Discontinued Treatments

The panel suggests that the following treatments should not be offered due to the lack of effectiveness found in studies and/or the risk of serious adverse events. In these cases, the risk appears to outweigh the potential benefits.

Long-term oral antibiotics
Intravesical Bacillus Calmette Guerin (BCG)
Intravesical Resiniferatoxin (RTX)
High pressure, long duration hydrodistentions
Systemic glucocorticoids

Download the official AUA Guidelines for IC/BPS at:

http://www.auanet.org/content/guidel...ent_ic-bps.pdf

FOR MORE INFORMATION SEE:

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

The Pleasures of Restaurant Dining on an Interstitial Cystitis Diet!

2011-03-06T12:24:00.000-08:00

Having a chronic illness like interstitial cystitis can deplete your time and energy, and it can be tempting to order in or eat out. However, eating meals prepared away from home is not always a time saver. Waiting in line for fast food or sitting down to eat at a restaurant often takes just as long as preparing a simple meal at home. It is also much harder to stay on an IC Diet when you eat out because you have less control of the ingredients and seasonings, leaving you at risk for bladder pain and frequency that becomes an IC flare.

That being said, even interstitial cystitis patients have times when they need or want to eat outside of the home. Even if your IC diet is fairly limited, there are steps you can take to make sure the food you eat is as IC/bladder friendly for you as possible. Fast food restaurants offer plain hamburgers and milk or milk shakes in a pinch. Most other restaurants will gladly accommodate special orders from their customers. In most restaurants, you can order baked or broiled chicken with no seasoning, a baked potato or plain rice, and steamed vegetables. When in doubt, ask to talk to the chef personally.

Navigating food choices in other people’s homes, on holidays, or at events like weddings can be slightly more difficult for someone with interstitial cystitis. Your best strategy is to find out ahead of time what is being served and work around it. If you know in advance that the food choices will not be IC/bladder friendly, eat a sandwich or small meal before you go. You can also offer to take a dish to pass, (IC diet friendly, of course) if that is appropriate for the situation. The book Confident Choices: A Cookbook for IC and OAB has dozens of recipes that are suitable for these occasions, including a variety of appetizers. Who knows, your recipes might just become crowd favorites!

I have become a great "window shopper" of food! I can admire it and smell it, but I don't have to eat it!

Finally, keep in mind why you are eating out. I used to remind my weight management patients to "socialize with people not food." The same goes for interstitial cystitis patients on an IC Diet. Part of learning to accept a chronic illness is learning when to let go of the mind set of "it''s not fair." Instead of looking at the great buffet set out at your niece's wedding and worrying about what you cannot eat, choose what you can eat, enjoy that, and spend your energy and emotions connecting with friends and relatives you may not have seen for awhile.

Similarly, when you are at a restaurant, stop focusing on the foods that are not IC friendly and order what will keep your bladder happy. (I have become a great "window shopper" of food! I can admire it and smell it, but I don't have to eat it!) Then focus not only on the people you are with, but also on the other great benefits of eating in a restaurant. Somebody else is doing all of the work! You don't have to grocery shop for the food. You don't have to prepare it. You don't have to set the table. And the best reason of all? You don't have to clean up afterward.

What are your favorite restaurant foods? How do you navigate the food served at a family event our party?

FOR MORE INFORMATION SEE:

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

Interested in a Stay-At-Home Career? How About Writing?

2011-03-02T16:26:00.000-08:00

One of the toughest challenges when you have a chronic condition such as Interstitial Cystitis can be going to work when you don’t feel your best, when you may be put into a situation where you don’t have easy access to a restroom or are otherwise struggling in the workplace.

There are, however, legitimate ways to work from home, where you are only steps away from your own bathroom, heating pad and other items that you use to manage your bladder condition. One of those is writing, and I’ve been writing and publishing professionally since 1990; I was diagnosed with IC in early 2007.

Now, I’m not going to lie to you. Competition for writing jobs can be fierce and it does take a while to acclimate yourself to the professional writing world. Here are some tips to make it easier:

If you want to write for a living or to supplement your income, don’t limit yourself. For example, don’t decide that you’ll only write books; this will close your mind to opportunities to write for magazines, perhaps, or to do business writing for clients with deep pockets and plenty of work to outsource. One place to find clients is on Elance.com.
Think about it this way. Would a home improvement pro insist that he or she will only do work that requires a hammer? Of course not! This person will have wrenches and screwdrivers and many other tools of the trade. I encourage you to do the same in your writing. You might surprise yourself!
Make a list of all of your specialties. Brainstorm fiercely! What do you know that many other people don’t? What have you learned at work or school that could be useful to others? Look for writing opportunities in those areas.
Network. When I first started writing, that meant in-person writer’s conferences and similar events, but now there are also numerous networking opportunities to be found online. When networking, you meet editors, publishers, agents and other writers, all of whom can help you on your journey. If you are able, financially and health-wise, to attend a conference, you can find huge numbers of them at Shaw Guides. At that site, you can search for conferences by state, by time of year, by areas of interest and so forth. And, if you can come to northern Ohio on October 8th, 2011, I’d love to see you at the writer’s conference that I’m coordinating: the first annual TrueNorth Writer’s Conference.
Read some of the many outstanding writers’ guides that share tips on how to successfully have a writing career. Your library will carry a selection; if you have access to inter-library loans, then that expands your possibilities even more. Be sure to check out Writer’s Market for publishing opportunities.
Take your budding writing career as seriously as any other type of job. Writing at a professional level takes significant practice, just as learning to play an instrument well takes practice or learning to ballet dance beautifully takes practice. But, take heart: determination to succeed goes a long way!
If you’re the type of person who wants and needs feedback on his or her work, please choose critique partners who are not friends or family members. Because of their love for you, they can’t be objective. You need someone who understands and appreciates what you’re trying to accomplish but can critique you with emotional distance.

Best of luck! You can contact me, any time, at kbsagert@aol.com or friend me on Facebook.

Kelly Boyer Sagert is a freelance writer with more than 20 years of experience. She has published 9 books, the latest of which is the FabJob Guide to Become a Freelance Writer, and she is finishing up the co-authoring of a two-book series. She has written two commissioned plays, and has published more than 1,000 pieces of writing in magazines, newspapers, encyclopedias, literary journals and more. She has also taught writing online for the company that publishes Writer’s Digest since 2000.

FOR MORE INFORMATION SEE:

You Can Write a Book! The No-Nonsense Guide to Self-Publishing

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

Baking Bread

2011-02-24T06:25:00.000-08:00

One of my goals for 2011 has been to do things that I used to love doing but haven't done for years. You know...things like get my flute back out and play, organize the family pictures, do some cross stitch, and start baking again.

This week I decided to bake bread...the kind that dietitians are not supposed to recommend--fluffy, white, homemade loaf bread. I will make some seedy wheat bread next, but I really wanted white bread this time.

It wasn't just the bread. I can get great fresh bread from the market any day I want to. It was the experience of making it. Putting on an apron that belonged to my mom, measuring the flour, kneading the dough...taking a peek at the rising dough every few minutes, then smelling that fabulous, homey, rich, comfort-food aroma of the bread baking. We ate it with soft butter and honey and made some fantastic french toast the next day.

The best part? It made me happy to make it, and it made others happy to eat it. It has motivated me to do more baking, and get to those other things on the list that I have put off for too long. Tomorrow, I am taking out my flute.

Don't let chronic illness and interstitial cystitis steal all of your pleasures. Pick one thing you haven't done in awhile, and reclaim the activity for yourself.

Amish White Bread (from Confident Choices: A Cookbook for IC and OAB)

Ingredients

2 c. warm water (110°F)
2/3 c. white sugar
1-1/2 T. active dry yeast
1-1/2 t. salt
1/4 c. vegetable oil
6 c. bread flour

In a large bowl, dissolve the sugar in warm water, and then stir in yeast. Allow to proof until yeast resembles a creamy foam.

Mix salt and oil into the yeast. Mix in flour one cup at a time. Knead dough on a lightly floured surface until smooth (8-10 minutes or about 250 times). Place in a well-oiled bowl, and turn dough to coat. Cover with a damp cloth. Allow to rise until doubled in bulk, about 1 hour.

Punch dough down. Knead for a few minutes, and divide in half. Shape into loaves and place into two well-oiled 9 x 5 inch loaf pans. Allow to rise for 30 minutes, or until dough has risen 1 inch above pans.

Bake at 350°F for 30 minutes.

Savor...........

FOR MORE INFORMATION SEE:

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

Should You Switch to Bison?

2011-02-14T06:40:00.000-08:00

Welcome Barbie Broschart Cervoni MS, RD, CD/N, guest blogger from Credible Nutrition

Buffalo meat, otherwise known as bison is becoming increasingly popular – particularly grass fed. Why? Besides being a culinary trend, grass fed buffalo meat is naturally high in omega 3 fatty acids and lower in saturated fat then cow’s meat. The key is grass fed. Grass fed beef is better for the environment and your health. When cattle eat of their own terrain (aka grass) they ingest hormone and pesticide free vegetation and seeds which are higher in omega 3 fatty acids. Studies have shown that these cuts of beef may also be higher in beta carotene and vitamin E. Not to mention grass fed bison has less saturated fat due to less marbling of the meat.

The downside? Depends on the critic. Some of my patients don’t like the taste of bison. I personally enjoy the flavor of a good piece of bison. Because it has less fat than your standard cows beef the mouth feel is much cleaner. It is a richer and darker meat, but has a mineral finish. When cooking, it is important not to overcook this meat because it will yield a tough, chewy texture. The other downside? Price. Grass fed beef is higher in price because these types of pastures are harder to keep. For some though the idea of eating sustainable, healthier meat is worth every penny. We say – if you got it, go for it! If not aim to purchase at 90% lean beef.

FOR MORE INFORMATION ABOUT IC and DIET SEE:

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder