Happy Holidays From The IC Network

December 2016

Sponsored by: Allergan (LiNKA) - Javacid - Beaumont Urology - Desert Harvest Aloe - Cysto Renew - Prelief - Acid Zap - CystaQ

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Trouble reading this issue? Read it on the web here!

This holiday season, we wish you the joy of simple moments. A snowball fight, a day making cookies, a good movie, an afternoon of board games, the peace of a holiday service, the inspiration of song and, of course, the love of family and friends.

The Interstitial Cystitis Solution - Best IC Book In 20 Years!

Our Book Review - Required reading for patients and their providers!

Written by Nicole and Jesse Cozean, the Interstitial Cystitis Solution is the best book written about interstitial cystitis in twenty years. If you are newly diagnosed with IC/BPS, it will give you a road map on how to approach your treatment and self care. If you’re a grizzled IC veteran, it provides the latest information about why IC symptoms often persist and how you can find relief. It may also challenge everything that you believe about IC.

Twenty years ago, IC treatment focused on repairing a damaged bladder wall. In 2017, we now understand that many of the urinary symptoms that IC and chronic prostatitis patients experience may originate from and/or be exacerbated by dysfunctional pelvic floor muscles and/or nerves. The authors wrote “The bladder doesn’t live in isolation. It’s intricately connected with all the muscles, ligaments and tissue that surround it, collectively known as the pelvic floor.”

While the initial cause and/or injury may be different in patients, the Cozean’s explain that many patients end up caught in a vicious cycle of bladder dysfunction, muscle tension, inflammation, pain and nerve up-regulation that leads to the chronic bladder symptoms we know as IC. They said “muscle tightness amplifies and contributes to pain and urinary symptoms.” They offer a three stage recovery plan that focuses on restoring muscle function and blood flow, as well as calming the nerves, reducing inflammation and treating pain.

The best parts of this book are the two chapters which discuss the anatomy of the pelvic floor and how physical therapy should be conducted. Did you know, for example, that if urethral sphincter muscles are tight they can cause an urgent need to urinate, burning pain in the urethra or the stinging that might occur during urination? That three specific muscles can directly cause bladder and urethral symptoms while other muscles cause the pain that you might experience while driving, sitting or during intimacy. It’s an eye opening journey into the anatomy and complexity of the pelvic floor. They are way more important and influential to bladder function than you (and your physicians) may realize.

Their discussion of pelvic floor physical therapy is outstanding. In 2001, the first study of PT and IC showed that 70% of patients responded to therapy with a greater than 50% improvement of their symptoms. A few years later, another study found that 90% of participants experienced an improvement in their symptoms. Men with chronic prostatitis also responded very favorably to physical therapy. It took large NIH studies in 2009 and 2012 to convince the urology community as a whole that physical therapy not only works but works better than many traditional therapies.

The Cozean’s explain that many physicians and physical therapists haven’t had any training in pelvic floor anatomy and therapy. Patients too may not believe that their symptoms are coming from somewhere other than their bladder or may find the concept of physical therapy “down there” off putting. They wrote “If your physical therapist can recreate any of your urinary or pain symptoms by touching a muscle in your pelvic floor, then that is something that can be treated.”

Lead author Nicole Cozen PT, DPT and WCS has an impressive array of credentials. She’s has a doctorate in physical therapy and is one of 275 certified women’s care specialists in the USA. This very rare specialty required extensive training in the pelvic floor anatomy and function. At her Southern California clinic, Pelvic Sanity, she specializes in the treatment of pelvic pain in men and women. She’s got the chops to explain IC within the context of pelvic floor dysfunction and she does it well.

The Interstitial Cystitis Solution is an outstanding educational tool and should be required reading for patients and their medical care providers. It WILL completely change the way you look at IC and, I hope, will give you several new ideas to explore especially if you are in pain and/or struggling to find a treatment that works.

Now Available in the ICN Shop - Learn more or buy it now!

 

Research & Clinical Trials

Canada IC Guidelines Finally Adopted

Why have so many interstitial cystitis patients in Canada come to the USA for care? Despite the glowing reviews about universal health care, there is a sad IC truth behind the scenes north of the border. There is no national IC organization to advocate on their behalf. Only a handful of physicians in the nation specialize in IC, including some who are no longer taking patients. Worse, it can take many months to see a urologist only to discover, at that first meeting, that they have little if any training in IC. Some patients believe that they have had no choice but to come across the border into the US for care. We hope that this will change with the release of the first guidelines for the treatment of IC/BPS in Canada.

Every Canadian IC patient should download and study these guidelines then share them with ALL of their Canadian medical care providers.

Learn more!

LiNKA Clinical Trial For Hunner's Lesions Opens New Location In Illinois

This study continues to seek patients! Do you or someone you know suffer from IC with Hunner's Lesions? If so, you are familiar with the pain that can make it difficult to enjoy life. Allergan, Inc. (http://www.allergan.com/home) is enrolling participants for a research study investigating a drug device to evaluate the safety and effectiveness of a continuous release of lidocaine inserted into the bladder compared with placebo for treating the symptoms of IC with Hunner's Lesions in female patients. All patients will have the opportunity to receive the active study drug if they request and satisfy the criteria. Read More!

 

The IC Diet - Simply Delicious: Low Acid Eating Made Simple

IC Diet Project - White Chocolate Dreams

IC Diet Project - White Chocolate Dreams

With the holidays quickly approaching, many often express frustration that they can’t enjoy some of their traditional “chocolate” treats. The main culprit is the caffeine found in milk and dark chocolates which has a neurostimulatory effect. That simple mug of hot milk chocolate could cause increased urinary frequency, urgency, migraine and rapid, irregular heartbeat. IBS patients may notice that it worsens constipation, nausea, gas and bowel spasms. GERD patients can experience worsening symptoms because chocolate acts to relax the sphincters at the top of the stomach. And if you’re facing surgery, experts suggest that you avoid chocolate at least two weeks prior to the surgery because cocoa can interfere with blood sugar control. White chocolate offers the richness and flavor without the bladder or gut distress!

White chocolate is made with the cocoa butter extracted from cocoa beans and contains only a trace amounts of the active stimulants found in cocoa solids. Yes, it has a very different taste but even diehard chocoholics enjoy the sweet, creamy flavor of good quality white choco- late.

Can you eat white chocolate if you’re allergic to dark or milk choco- late? Talk with an allergist and/or ask for sensitivity testing to determine what you can tolerate safely.

From enjoying a mug of hot chocolate on a cold winters day to savoring a white peppermint patty as an after dinner treat, it’s nice to have as an occasional treat! Emphasis on occasional because chocolate in all forms is still high in saturated fat andsugar. Here are some simple yet fabu- lous white hot chocolate recipes submitted to the IC Chef Cookbook for your dining pleasure! Enjoy! Read more!

White Hot Chocolate -

If you're desperate for a hot drink SANS the coffee, try Stephen's White Hot Chocolate! It's a popular favorite among the IC crowd! White Hot Chocolate

 

Introducing Javacid - Natural Coffee Acid Neutralizer

Holiday Survival Strategies

Finding Joy

 It's easy to blame yourself when IC limits your ability to enjoy a holiday. I want you to remember that IC is not your fault. You are NOT to blame. You have nothing to be ashamed of. Be proud of yourself. You are working hard to treat your IC. Treat yourself with kindness and compassion. Take in the small moments of joy that a holiday can bring. The lights, the music, the games, the sports and the laughter. Do things that will bring you comfort and joy, even if that means that you stay home and sit by the fire with a favorite book. If you need a shoulder to lean on, visit the ICN Support Forum or your favorite IC groups.

Travel

Over the river and through the woods in a bouncing car, much less sleigh, isn't appealing for anyone with pelvic pain and discomfort. Enduring hours of bouncing, jiggling and stress associated with travelling is a recipe for an IC flare. If at all possible, invite family and/or friends to your home instead or travel shorter distances until you are feeling better. And if you need to stay home because your symptoms are flaring badly, then give yourself permission to stay home. Sometimes the best holiday of all is staying at home, with a fire, a movie and some easy, IC friendly food!

Holiday Food

We often hear patients lamenting that they won't be able to enjoy their favorite holiday meals & foods. Yes, this is true if your favorite foods involve acids or caffeine! The last thing we want you to do is eat or drink something that is very bladder irritating on Christmas Eve only to ruin your Christmas Day with a terrible flare. This is the time to be a bit more protective with your diet. The good news is that the majority of holiday foods and trimmings, from pancakes christmas morning to a christmas turkey or roast beef for dinner are IC friendly.  It's the heavy Italian foods with red sauce (i.e. pasta, lasagna) or spicy ethnic foods that you'll want to avoid in favor of milder foods.

  • If you're going to someone elses house for several days over the holidays, bring some of your favorite foods with you, such as your bread, cheese, veggies, cookies and the like. Explain to your host that certain foods really irritate your bladder and that you'll be happy to contribute some dishes that are flavorful and comfortable for you.
  • If you're going to someones house for a meal, especially if they have a history of preparing food that you know will be irritating, eat some snacks ahead of time so that you are full. For potlucks, bring a favorite dish or two that you can know you will enjoy.
  • Don't eat a food that you know may bother your bladder just to appease your family or host. Simply put that food to the side of your plate and eat something else instead.
  • Practice the art of distraction. If someone makes a comments about what you are or aren't eating, divert their attention to something else such as: the latest news, politics, holiday decorations, etc.
  • There isn't a better time for using an acid reducing supplement like Prelief! It helps to reduce the overall acid level of the food so that it's less bladder irritating. If you don't have any with you (and it's too late to order from the ICN) check your local Walgreens or CVS.
  • ICN Website - ICN Diet & Food Lists
  • ICN Article - Holiday Foods & Parties

Family & Friends

Why, oh why, is there atleast one family member who, rudely, doesn't believe that IC is a real disease? We suggest that you put out our free IC Information Booklet (free download), a few of our IC Optimist magazines or even some of our Living With IC videos! When it comes up, calmly look that person in the face and say "Three to 8 million women in the USA suffer from this disease and 1 to 4 million men. Here are some reading materials that will help you understand what I'm struggling with." Then change the topic. Don't be defensive. Don't be hurt. Remember, these individuals are just extremely naive or uninformed. It says far more about them than you if they bring it up in a hurtful way! I encourage you to calmly and firmly stand up for yourself!


Fall 2016 IC Optimist Released

IC Optimist - Hooked on AntibioticsIn this issue:

1. Editorial - Hunner's Lesions Should Be Considered a Seperate Disease

2. New Chronic Pelvic Pain Guide Adds Clarity for IC

3. Feature Story - Chronic Pain Patients Struggle To Find Care

4. Self-Help tip - The Agony of Cranberry

5. Research Update - Substantial Revision Rate For Interstim

6. Recurring Bladder Infections Linked to Menopause

7. The Latest Clinical Trials

8. Industry News - Hep-Lido-A Price Drops

9. The First IC Angel

10. IC Diet Project

11. Surviving The Holidays As A Newly Diagnosed Patient

12. What's New in the ICN Shop - The IC Solution & Tyler's No Acid Coffee

Purchase an electronic copy

Purchase a printed copy

Learn more about subscriptions

 

24/7 ICN Patient Support Forum

ICN Patient Support Forum

 

If you've never met anyone else with IC? If you're feeling alone in your struggle with IC? If you're struggling to figure out why you're flaring? You are not alone! We're here and we can help! The IC Network Support Forum provides hope, comfort and encouragement to patients around the world! We welcome you with open arms. In our forum, you can ask questions, help other patients and, most of all, make friends.

Current Forum Stats

Discussion Threads: 79,709 - Posts: 631,281 - Active Members: 43,258

 

What's New In the ICN Shop! - www.icnsales.com - 800.928.7496

Gingerbee Microwaveable Heating Pad - Now $5 off!

If you struggle with muscle tension and/or bladder pain, the odds are that you using a heating pad very comforting. We first came across the GingerBee line of products at a local holiday craft faire here in Northern California. This small, woman owned business in Northern California creates a variety of heating pads for the neck, back and legs. We bought their trapezius neck pad as a trial and, wow, it works perfectly for the pelvis so we're now calling it our pelvic heating pad! Made of flannel and uses rice as a filler. Unscented! Made in the USA with 100% cotton flannel.

Learn more or buy it now!

OTC Neutraceuticals

Prelief

CystoProtek

Cysta Renew

CystaQ

Desert Harvest Aloe

Low Acid Coffees

Coffee is always a controversial topic in the IC community. Yes, many patients simply cannot drink it, especially those with Hunner's lesions or severe bladder irritation. However, patients with mild symptoms or those struggling more with pelvic floor muscle tension rather than bladder irritation, may often tolerate them well! Tyler's Organic Coffee is the first acid free coffee with a pH of 7. Simpatico receives outstanding reviews for its smooth, rich flavor and low acid levels! If you're ready to give coffee a try again (and don't try too soon), we suggest trying either brand!

 

 

Tyler's No Acid Decaf Coffee

Tyler's NO ACID Coffee Decaf

 

Tyler's No Acid Regular Coffee

Tyler's NO ACID Coffee Regular

Simpatico Low Acid Arabica Coffee Decaf

Simpatico Low Acid Coffee Decaf

Simpatico Low Acid Arabica Regular

Simpatico Low Acid Coffee Regular

Herbal Teas & White Hot Chocolate

 

Pumpkin Spice White HOt Chocolate

Pumpkin Spice White Hot Chocolate

 

Stephen's White Hot Chocolate

White Hot Chocolate

Harney's Pumpkin Spice Tea

Harney's Pumpkin Spice Tea - 20 sachets

Harney's Pumpkin Spice Tea

Harney's Pumpkin Spice Tea - 50 sachets

Desert Harvest RELEVEUM For Vulva & Perineal & Shingles Pain

ReleveumIf you struggle with vulvodynia and/or perineal pain, Desert Harvest Reléveum is worth checking out. It's a 96% natural skin care cream that contains 4% Lidocaine cream and certified organic Aloe Vera gel to help with the irritation, itching and burning associated with Vulvodynia, and other perineum irritations. Contains no irritating parabens or chemical additives and contains a unique variety of natural botanicals like Calendula and chamomile to enhance the soothing and healing properties of the Reléveum compound.

Learn more!

Mama Strut Reusable Hot & Cold Packs

We love finding new products that can help patients who suffer with pelvic pain. We found these earlier this spring and fell in love! Mama Strut reusable hot and cold packs are perfect for patients who need to comfort their "nether" region. Shaped like a menstrual pad, they fit comfortably in the crotch area and may help soothe rectal pain, vulvar pain and pelvic floor muscle tenderness. They can be frozen for cold or heated in the microwave and contain instructions on the back of the pad.Hot & Cold Packs

IMPORTANT - DO NOT place frozen or hot pack directly on your skin. This, like all other hot or cold products, should be wrapped with a small towel first to protect the especially tender skin in your crotch area.

Each package contains two pads. Dimensions: 7" long by 2.5" wide

Learn more!

Best Sellers

 

Acid Zap

Acid Zap to enjoy some of the riskier summer foods!

Prelief
Prelief

MultiRight Low Acid MultiVitamin
MultiRight Low Acid MultiVitamin

Luvena Prebiotic Vaginal Moisturizer
Luvena Vaginal Moisturizer
Feminine Wipes, Lubricants

Healing the Pain "Down There"

Healing The Pain "Down There" DVD Program

Heathers Acacia Fiber
Acacia fiber to stay regular and reduce constipation