Interstitial Cystitis Network Newsletter

March 2013 - ICN E-Newsletter

Sponsored by: Prelief - CystaQ - BladderQ - Desert Harvest Aloe - Squatty Potty

Coming this Spring!  MultiRight - The first low acid multivitamin developed by Farr Labs & the ICN!

Trouble reading this email?? Read it online here!

New Winter 2013 IC Optimist Released!

We're delighted to announce that the Winter 2013 IC Optimist is currently in the mail to our subscribers throughout the world and has already been delivered to our e-mail subscribers. The IC Optimist provides financial support to the ICN, thus allowing us to develop this free e-newsletter and the ICN Support center where more than 200,000 patients per month participate! If you've found the ICN helpful, please support us by becoming an ICN subscriber and/or shopping in the ICN Mail Order Center!

 

Contents:

(1) Guest Editorial - Don't Wait To Apply For Disability Insurance - IC patient Rita made a terrible mistake. Rather than applying for disability benefits when she first became ill, she chose to live off of her savings for years before her money was exhausted. Sadly, she waited too long to receive state benefits and was months away from losing her federal benefits. Learn about her story and why you shouldn't wait in this important editorial.

(2) Got Multiple Chemical Sensitivity? - IC and endometriosis have been labelled "evil twins" for their frequent coexistence in women with pelvic pain. In a shocking breakthrough, endometriosis has now been linked to exposure to the chemical dioxin and there are some startling correlations with interstitial cystitis. In our feature story, we explore this possible yet not proven relationship and offer tips on how to reduce chemical exposure in your home and food.

(3) Estrogen, Mast Cells and IC Flares: The Hormone Connection - Women with IC often report flares during ovulation or before menstruation. From puberty through menopause, IC writer Stacey Shannon discusses the influence of hormones on IC and the bladder.

(4) Could a Tick Bite Cause IC? Lyme Disease Treatment Found Helpful for Some Patients - If you live in a high Lyme disease area and/or have been bitten by deer ticks, we think its worth getting screened for Lyme disease which has been known to cause bladder symptoms similar to IC.

(5) A Hunner's Ulcer Success Story - IC patient R. Ritz spent years suffering with severe pain and discomfort, working with medical care providers who had little help to share. A cutting edge treatment for Hunner's ulcers, triamcinolone injections, was the secret to his now pain free life. Yet, finding a doctor to actually do the procedure was challenging.

(6) My Addiction Story - When Sharon Liles starting using pain medication for her bladder discomfort, none of her caregivers taught her how to use medication nor any of the simple self-help strategies that can reduce pain without using a pill. Sharon is bravely sharing her story with addiction to help educate other patients and to encourage proactive pain care and relief.

(7) Consumer Alerts - We were shocked to receive a press release promoting the use of sacral nerve stimulation in children. In this consumer alert, we share some strategies that parents should use to discuss this controversial medical device with the urologists. Is it safe in children? We'd sure like to see research that demonstrates this.

(8) The Latest News - LiRIS clinical trial update, FDA approves two new therapies for OAB, new IC text book released!

(9) The Latest Research - PTNS found to be equally effective yet far less expensive than SNS, Botox treatment found more successful with repeat injections, menopause reduces bladder healing and increases UTI's.

(10) Pamper Yourself From the Inside Out - You're working hard to cope with your IC. You deserve a reward! Bev Laumann shares some lovely tips and strategies that you can use to create a "spa treatment" in your home.

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The Latest News & Research

Seen any IC billboards yet?

The ICA has launched a bold and unusual promotional campaign. Coming to billboards in various parts of the USA this month is a bright, colorful banner that says "Frequency, Bladder Pain, Urgency" with the URL for their website (ichelp.org) in big, bold letters! It has the IC patient community talking! They've asked patients who see them to take photos and e-mail them to the ICA! We say "Well Done!"

Japanese IC Meeting & Conference

The Japanese IC research community (ICICJ) is joining forces with the European Society for the Study of IC to hold a joint conference later this month covering the latest advances in interstitial cystitis / bladder pain syndrome. Featuring many of the brightest IC minds and clinicians in the world, the theme will be phenotyping bladder pain based on pathophysiology. Read more!

Chicago Tribune Shares IC Patient Story

For 15 years, Lauren Stutman sought relief from her debilitating bladder pain. She saw more than 10 doctors, many of whom would assume she had a urinary tract infection and send her away with Ciproflaxin.

But the antibiotics didn't help, because Stutman didn't have an infection or any other problem detectable through the many tests she underwent. What she had were flares of pain between her belly button and her vagina that "felt like someone made tons of incisions and then poured lemon juice on them. Read more!

New Restroom App - RUN PEE

The RunPee App is primarily here to help you enjoy your movie going experience by telling you the best times to Run and Pee without missing anything important. The RunPee family – Dan, Mom and Sis – see each wide release movie that comes out on opening day. They watch for 3-5 minute spans in the movie where nothing really exciting, or funny, or important happens. ( Obviously this can be next to impossible for really good movies but we do our best. ) They start looking for pee times about 30 minutes into the movie and we stop when there’s only 20-30 minutes left in the movie. For short movies of about 90 minutes there may only be one peetime. But for movies over 2 hours there may be 2-3 peetimes. Each peetime has a synopses of what happens. So if you do need to run and pee then you’ll be able to come back to the theater knowing exactly what happened while you were taking care of business. Read more!

More Studies

 

IC & Pelvic Pain Clinical Trials

Clinical trials are a vital part of the search for a cure for IC. Not only do they allow patients to participate in cutting edge research, but they also can help patients receive treatment who may not have access due to a lack of health insurance. There are 30 studies currently underway as listed at clinicaltrials.gov!

New Research Study Seeks Women With IC & Pelvic Pain

Case WesternResearchers at University Hospitals Case Medical Center in Cleveland, Ohio are currently seeking volunteers to participate in a research study to learn more about Interstitial Cystitis (IC) and Myofascial Pelvic Pain (MPP).

Are you suffering from pain in your bladder or pelvic region? If so, you may be eligible to participate in our research study. Our goal is to learn potential causes and better diagnostic tools for these diseases.

Qualified participants must be female and are 18-80 years old:

  • Have been diagnosed with IC
  • And/ or have been diagnosed with MPP
  • And/or have a family member that has been diagnosed with IC you both would like to participate

The study involves 2 - 3 study visits which take place in Cleveland, OH and approximately 10 hours of your time. Total compensation for completion of all study visits is $150 in gift cards.

Research is always voluntary!

If interested, please contact:

Sarah Ialacci

Study Coordinator

(216) 368-2684

Sarah.Ialacci@uhhospitals.org

Melissa Kwitowski

Study Coordinator

(216)368-0783

Melissa.Kwitowski@uhhospitals.org


Interstitial Cystitis: Elucidation of Psychophysiologic and Autonomic Characteristics (ICEPAC)

Case Western Reserve University: School of Medicine

Funded by: National Institute of Diabetes and Digestive and Kidney Diseases

More Studies

 

Recent, Topical IC Blogs & Videos

 

Self-Help Tip of the Month - The Food Revolution: Teach every child about food

Blueberries

 

(By Jill Osborne, ICN President)

Did you know that one billion bottles of cola are drunk each day in the world. Talk about a big business. Yet, underneath the glossy advertisements, memorable jingles and funny TV commercials is an ugly secret. These companies are striving to make obscene profit for their share holders by manipulating the health of their customers. How? Through addiction. Yes, addiction. They understand that if you become addicted to their product, they will have a customer for life.

The precedent, of course, is the tobacco industry where manufacturers added yet more nicotine into cigarettes to facilitate addiction to generate more sales.  They lied for years about the danger of smoking while glamorizing it to men, women and children. Of course, as cancer rates climbed we, as a society, eventually caught on and smoking is now down in the USA. Sadly, though, cigarette manufacturers contain to earn staggering profits because they are now selling their cancer sticks to other countries, condemning tens of thousands to die in the years to come.

Yet, I believe that there is a far more devious conspiracy currently being served throughout the world, that of sugar and high fructose corn syrup.  You can find it in almost every "man made" product on the shelves of your local supermarket. When you eat sugar, it stimulates the release of dopamine in your brain, which makes you feel pleasure. The brain recognizes and likes this feeling and begins to crave more. It should come as no surprise that heroin and morphine stimulate the same receptors in the brain that sugar does.  It's a real "high."

Think about it. This is a food producers dream. If they put sugar in food, even food that normally wouldn't be sweet, they are triggering pleasure and they know it.  It's in their vested interested to give you as much sugar as they can because it makes you feel good. Americans now consume 22 teaspoons of sugar a day. That's an insane amount of sugar.

The second obstacle we face is the mass production of food. Families simply don't cook very much anymore and some children are now growing up completely unable to identify simple vegetables. Instead, they live on boxed, pre manufactured and "fast foods."  Of course, the fast food industry  wants you to be a customer so they've made sure that their products are cheap and high in sugar. Throw in their convenient super size bargains, they give you double, triple even quadruple the normal amount of sugar and they've facilitated a world wide addiction. Love McDonalds? You know why don't you. That shake makes you feel good.

You, my friends, are being deliberately manipulated by an industry who has one goal, to make a lot of money. They don't care if you become obese. They don't care if you develop diabetes. Oh no, they'll try to help you by selling you "low fat" items instead. But if you look at the ingredients of those foods, they are filled with yet more carbohydrates and sugar. So, if you think you're helping yourself by eating "low fat foods" think again. You aren't.

Then consider the diet soda industry. Their advertisements are filled with images of young, slender people enjoying a cool drink on a hot day. The overt message is one of health. Yet, research has proven that aspartame and the consumption of diet sodas actually increase your chance for obesity because they trigger carbo and sugar cravings throughout the day.

But it's the children who are the worst victims. Take the simple example of milk. Our school districts fell for a milk industry marketers pitch that flavored milk would be drunk more often by children. Thus, chocolate milk now represents 70% of the milk served in schools. These fake milks are the far from healthy. They contain almost as much sugar as a can of soda and many children drink two a day. What does this do? Sugar reduces concentration. It makes children hyper. You've seen it. You know what happens when a child gets a sugar buzz. Of course, the chocolate milk industry knows that sugar has addictive properties too.

Today, children are eating about 56 grams of sugar a day, just from school milk. In a week, that's 280 grams. In a school year of 180 days, that's 10080 grams. And, from first grade through sixth grade, that could total a whopping 15,120 grams of sugar JUST FROM SCHOOL MILK. In his prize winning lecture on TED, Chef Jamie Oliver then said "Any judge in the world could look at these statistics and the evidence and they would find any government of old guilty of child abuse."  I agree.  It goes back to one simple fact. Companies that sell pre manufactured foods are using sugar to cultivate addiction to create long term customers. It's sickening.

We must starting cooking in our homes again. We must teach children about healthy food. Where does it come from? What does it look like. We must, as families, walk away from fast food and pre manufactured foods to eat more fresh, healthy fruits, vegetables and meats. It's time to stand up and say "I refuse to be led around companies trying to profit off of the health of my children."   I encourage you to say yes to foods made from nature and say no to foods that are made in a chemistry lab.

Please watch these two lectures below! They could change your life, help your children live a longer, happier life and stop the terrible obesity problem we are struggling with.

ICN Hot Topics - Frequency feeling that NEVER stops!

 

ICN member DCHokie asked wrote "it just feels like I am irritated (more of my urethra) and I have to go to the bathroom ALL THE TIME, 24/7. I feel like I have honestly tried everything: (OAB, atarax, elavil, 6 instillations, antibiotics), supplements (cystoprotek, aloe vera, d-mannose, vitamins, marshmallow root etc), countless doctors and tests, tried all the working out/yoga/detox/religion and literally nothing has taken away that feeling. I know when I actually have to go and when I don't, meaning I can hold it for hours and I have no pain. Everything else is normal but this has driven me crazy for almost a year. It never comes and goes, not even for an hour or a day. It is just CONSTANT frequency/urgency feeling. I feel like I am driven mad like I could pull my hair out right now. Does anyone have this?? What has worked for you?

Check out the discussion and share your thoughts on the ICN Support Forum!


Upcoming Patient Conferences:

Next Month! A Weekend Retreat for Female Chronic Pelvic Pain - April 27-28, 2013

Join some of the top chronic pelvic pain specialists in the country for a special 2-day educational retreat dedicated to female chronic pelvic pain. This weekend will provide a solid foundation of knowledge, skills, and treatment modalities that will help you get back on track towards managing and healing your chronic pelvic pain. The conference is for female chronic pelvic pain patients with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Vulvodynia, Vestibulitis, Lichen Sclerosis, Pudendal Neuralgia, Endometriosis, and other pelvic and genital pain disorders. Supportive partners and significant others are invited and encouraged to join us on this weekend of learning and transformation! There will be special workshops just for you!

Learn more!

 

Recipe of the Month - Crock pot Artichoke Chicken and Rice by Carole

 

Did you know that IC patients have shared hundreds of recipes in the ICN IC Chef Cookbook and our support forum! Here's a recipe submitted by IC author Bev Laumann! Find recipes and share your own here!

 

Ingredients:
• 1 to 1 1/2 pounds chicken breasts halves
• 1/4 cup flour
• 3 tablespoons Parmesan cheese (canned is the best tolerated)
• 1 teaspoon salt
• 1/2 teaspoon black pepper
• 2 tablespoons olive oil
• 1 1/2 cups converted(parboil) rice
• 1/4 cup chopped red bell pepper
• ¼ cup chopped celery
• 4 green onions, chopped(if can tolerate)
• 4 ounces mushrooms, sliced
• 1 1/2 cups chicken broth(IC friendly)
• 1 can cream of mushroom soup (IC friendly I use Amy’s)
• 1 cup frozen or canned artichokes( make sure IC friendly)
• *if using canned artichoke use whole can*


Preparation:
In a large skillet over medium heat, heat the olive oil. Combine flour, cheese, salt and pepper. Dredge chicken in the flour mixture then brown in the hot oil. Transfer chicken to the slow cooker. In the hot skillet, saute red pepper, green onions, and mushrooms for about 2 minutes; add chicken broth and soup, stirring to combine thoroughly; pour over chicken. Stir in rice and artichokes; cover and cook for 5 to 6 hours on low.

 

We're Looking For MD & PT Recommendations in Canada & USA

 

You've asked. You've pleaded. You've often been desperate to find a urologist who can treat your IC. We're now collecting names to create a new database of care providers in Canada and the USA! If you have a doctor that has treated you compassionately, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form.  We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.

Click here to search our database

Click here for our doctor recommendation form!


New Resource - The Squatty Potty can help with constipation and pelvic floor tension!

The Squatty Potty helps ease suffering from constipation and pelvic floor disorders in women and men by improving toilet posture. A 2008 study by Kaiser Permanente published in Obstetrics & Gynecology found that one-third of women suffer from one or more pelvic floor disorders. In addition, aging, obesity, and childbirth increase the likelihood of experiencing these issues. Although pelvic floor disorders are more common in women, men also suffer from similar symptoms; the National Health and Nutrition Examination Survey reports that nearly one in every five men ages 60 and older experience incontinence.

Manufactured in the USA, the Squatty Potty’s ergonomic design properly aligns the colon to reduce straining during bowel movements; pressure from frequent straining can contribute to pelvic floor disorders. Recently featured on The Dr. Oz Show and The Doctors, the Squatty Potty is a toilet footstool that helps assume the squatting position for more effective elimination.

We think this is a must for any IC patients also struggling with constipation, hemorrhoids or pelvic floor dysfunction. Watch a video and learn more here!

 

IC Resources From The ICN Mail Order Center

www.icnsales.com - (707)433-0413

Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!

Bring in the Spring with Bladder Friendly Tea and Cookies

Who says you can't go out and enjoy a cup of something with your friends. There ARE some bladder friendly teas that could work very well for your tender bladder, made especially yummy with some great new organic cookies that we've found. These are a special treat!

 

Davidson's Roasted Carob Dessert Teas

Alice's Stick Cookies are back and just as good, if not better!!!

 

Introducing Luvena

One product line getting rave reviews from patients is LUVENA  series of prebiotic feminine moisture products. These provide soothing relief for dry, tender tissues!

Luvena Vaginal Moisturizer

Luvena Feminine Wipes

Luvena Personal Lubricant

Best Sellers

 

Find these items and 400 more items in the ICN Mail Order Center Today - http://www.icnsales.com