Interstitial Cystitis Network Newsletter

This Week on the ICN! November 18, 2014

Sponsored by: CystaQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - PainShieldMD

Quick Links: Join the ICN - 24/7 ICN Support Forum - Find A Specialist - Living with IC Videos

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

Pain Study Seeks Men & Women For A Quick Survey

If you do just one thing today for IC, we hope that you will participate in this very important IC research study!

 

Dr. Dean Tripp (Queen's University, Kingston ON Canada) is conducting one of the most intriguing studies that I've seen in years. In "How Pain and IC/BPS Symptoms Are Associated With Patient Quality of Life" he is trying to understand more about the pain of IC, how it affects our mood, our level of hope and so forth. He also asks quite a few interesting questions about how patients view their lives with IC.

You can take the survey once or help them study how pain impacts our lives over a two month period. In that case, you'll end up taking it after 4 weeks and 8 weeks too! The study is short. It takes just 15 minutes to complete and has the potential of contributing very important data!

PLEASE SHARE WITH YOUR FRIENDS! He's looking for 1500 participants to make this survey meaningful!

You can participate at the link below!

http://queensu.fluidsurveys.com/s/ICBPSQoL/

 

Fall IC Optimist Released

The IC Optimist is the ICN's quarterly magazine for patients struggling with IC/BPS and the providers who care for them.

In this issue:

(1) ICN Editorial – What are you willing to do to get better?

(2) IC Treatment Guidelines Updated

(3) Identifying The Subgroups of IC

(4) Big Step in Battling Bladder Disease – LiRIS

(5) Clinical Trial News

(6) Related Conditions: Pelvic Organ Prolapse

(7) Self-Help Tip: Holiday Survival Strategies

(8) Perfect Together – The Spouse of an IC Patient Speaks Out

(9) Simply Delicious, The IC Diet Project: The Things You Can Do With Pumpkin & Butternut Squash

 

Subscribe to the IC Optimist

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Please Think of the ICN This Holiday Season

Every patient organization is seeking donations and assistance this holiday season. Times are tough. Almost all of the pharmaceutical companies that supported IC outreach in the past decade no longer provide any financial support as they focus more on building profit for share holders. The costs of medications have increased forcing many patients to choose between medicine and food. Many simply can't afford a membership! We certainly understand the financial struggles of life with IC because we're IC patients too.

But, if do happen to have the ability to make an end of the year donation or gift, we hope that you'll think of the ICN as a possible recipient.

Here are five reasons why we think we are deserving of your financial support.

  1. We are the only patient support group that has an educational phone line and answers patient calls every weekday, all at no charge to our members. 1-800-928-7496
  2. We operate IC Awareness Month at a loss every year because it's so important to get the word out.
  3. We provide this free e-newsletter to more than 20,000 readers each month keeping patients informed of the latest news, research developments, clinical trials and self-help strategies.
  4. Despite very modest funding, we have been rated the TOP (most accurate, credible and reliable) patient website dedicated to IC in research studies done by Harvard Medical School (2011) and the University of London (2013).
  5. We employ IC and/or pelvic pain patients because we believe that patients do have the ability to work and contribute meaningfully to this cause.

If we've made a difference in your life, please consider becoming an ICN subscriber or make a donation today! - Jill O., ICN President & Founder (Diagnosed at 32, first symptoms at 13)

 

The Best IC Memes of 2014 - #icawarenessmeme2014

IC activist Tali Keteri challenged IC patients to come up with funny, ironic, sexy, and passionate memes about IC that could be shared through IC Awareness Month and tracked across the internet. See all the entries here!

 

Best IC Memes of 2014

See all the entries here!

 

The Latest Research

Polyomavirus BK found in patients with Hunner's Lesions

The first confirmed viral connection with one form of IC has been made in a small but compelling study from Belgium. Researchers compared urine samples from patients with Hunner's lesions and controls. They found Polyoma Virus BK in 11 out of 15 IC patients studied, each having Hunner's lesions. None of the patients with non-ulcerative IC had positive urine findings for the virus. They believe that there is an association between this virus and Hunner's lesions and suggest that patients be classified as BKPyV positive or negative. They also suggest that this could be a new potential target for therapy. We'd like to see these results duplicated at more study centers. Read the abstract

Oral Pentosan Polysulfate (Elmiron) Study Yields Poor Results

Patients who have found Elmiron helpful in controlling their symptoms will find this study puzzling while those who found it ineffective will say "of course it doesn't work." Researchers compared the effectiveness and safety of Elmiron (pentosan polysulfate) at 300mgs per day, 100mgs per day and placebo. Their results found no significant difference between the pentosan groups and controls. Pentosan was generally well tolerated but approx. 10% discontinued the study due to an adverse event. Read the abstract

Intravesical Pentosan Enclosed In A Liposome Shows Encouraging Results

Dr. Eliot Lander and colleagues have been exploring a different way of delivering pentosan (aka Elmiron) to the bladder wall, via the use of hollow liposomes. In a small open label, uncontrolled study performed at their clinic, a greater than 50% improvement in symptom scores were seen, as well as a reduction in pain levels in participating patients. No adverse events were reported. Researchers believe that further study is merited to determine ideal doses, dosing intervals, safety and cost effectiveness of this therapy. Read the abstract.

Intravesical Hyaluronic Acid Study Helps Refractory IC Symptoms

Researchers in Korea studied 33 female ICPBS patients who were not responsive to other treatments. Patients received four weekly treatments of HA. No complications were observed. 61% of patients showed improvement after treatment. Read the abstract.

Pollen Extract Reduces CP/CPP Pain

Men with chronic prostatitis/chronic pelvic pain experienced significantly improved symptoms after treatment with DEPROX 500, a bee pollen and vitamin product. Read the extract

 

Consumer Alerts

Fleet OTC Products

If you struggle with constipation and have been relying on Fleet products to control your symptoms, here's an important alert. The overuse of Fleet sodium phosphate products (by mouth and/or by enema) to treat constipation can lead to dehydration, electrolyte imbalance, kidney and heart complications, including death. The FDA said "most cases of serious harm occurred with a single dose of sodium phosphate that was larger than recommended or with more than one dose in a day." Read more!

ABC Dophilus

If you take your acidophilus and probiotics regularly, please take note of this recall for ABC Dophilus which is contaminated and could cause serious illness. Learn more here!

 

Has IC Kept You Home During The Holidays?

Has IC kept you home during the holidays

 

Here's one of the most frustrating questions that IC patients often struggle with. "Should or shouldn't we go to Grandma's House for a holiday celebration if IC is flaring?" Read the blog here!

 

Living With IC Video Series - Thanksgiving & Holiday Episodes

The Living With IC video series has had more than 250,000 views on YouTube. We hope that these two holiday episodes provide you with some new, fresh ideas on the coming season! You can find many more, including more tips on travelling, taking vacations and, of course, managing IC flares on our website! (http://www.ic-network.com/videos/)

 

1

Facing The Holidays With New Diagnosis

Thanksgiving Menu Ideas

IC Friendly Thanksgiving Menu Ideas

 

Creating an IC Friendly Thanksgiving

Roast TurkeyIf this is your first holiday season with a diagnosis of IC, we've assembled some resources that we hope will help you enjoy the season, including new videos, articles, meal tips and many IC friendly recipes to play with.

Surviving a holiday like Thanksgiving is all about pacing yourself, communicating clearly with your family and, of course, avoiding those things that we know can trigger IC flares.

When it comes to travelling, we encourage you to keep your car rides as short as possible or, better yet, bring the holidays to your home this year. This is the time of year when it's perfectly okay to ask for help from family members and friends, particularly when it comes to cooking and the inevitable clean up afterwards! Think potluck!

I don't know about you but I love eating a traditional turkey meal. I've never been a fancy food eater. I like my food simple, fresh and tasty so if I have to choose between a fancy, marinated meat and roast turkey, I'll take the turkey any day. The same is true for stuffing and veggies. What could be better than mashed potatoes or sweet potatoes with butter! Yum!!! Luckily, the vast majority of traditional thanksgiving desserts are IC friendly, particularly my favorite pumpkin pie and whipped cream!

Read the article and see our list of recipes here!

 

Interesting Blogs, Articles & Videos

 

ICN Survey Center - Help Our Research TODAY!

 

Self-Help Tip - Carmichael Throne Company Makes Bladder & Prostate Friendly Chairs

If you've found sitting painful and uncomfortable at work and the ICN Bladder & Prostate Friendly chair cushion helpful, you might find the new office chairs from the Carmichael Throne Company helpful. The story behind these chairs is fascinating. The owner, Dan Carmichael, focused first on creating a stool ("throne") for drummers. It was so successful that they've now decided to create office chairs.

We ordered one and found the seat design identical to our own ICN Chair Cushions with a channel that runs from front to back, reducing all pressure on the urethra, vulva, bladder, prostate and tailbone. The only caveat we have is that the foam is firm and might be uncomfortable for those who struggle with muscle tenderness. The solution? Just place one of our own cushions right on top if you need it a bit softer!

Check it out and learn more about these affordable chairs here!

 

 

What's New In the ICN Shop!

www.icnsales.com - 800.928.7496 or 707.433.0413

1. Introducing Releveum For Tender, Sensitive Skin, Vulvodynia

Desert Harvest Reléveum is a 96% natural skin care cream that contains: 4% Lidocaine cream, certified organic Aloe Vera gel that is cold processed from the barbadensis Miller species, which contains the highest levels of the anti-inflammatory, pain-relieving, and healing properties of the aloe plant.

Originally formulated to help with soothing irritation and burns associated with radiation therapy, neuropathy and shingles, this unique product may 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 here!

2. Colorado Mountain Wine Jellies

Yes, a glass of wine could irritate our tender bladders BUT wine jellies have the alcohol cooked off and may be more bladder friendly. Colorado Mountain Jam has made two wine jellies that we think are wonderful. They are lower acid wine varietals! Use in sauces, glazes or marinades. Pour over cheese for a perfect holiday appetizer! QVC shoppers should recognize this brand. They are a top food provider for the QVC sales network!

Merlot Wine Jelly

Chardonnay Wine Jelly

3. Simpatico Arabica Dark Roast Low Acid Coffee (Decaf & Regular)

If you've missed coffee and your bladder symptoms are under control, it might be time to try a cup of coffee again provided, of course, that's low acid. Simpatico Low Acid Coffees get the best reviews from IC patients for their flavor and bladder friendliness.

"Roast-dominated profile. Charred wood rounds toward dark chocolate in aroma and cup. Hints of cardamom and flowers. Roast-muted acidity; full though rather rough mouth feel. Chocolate persists pleasantly in a bittersweet, slightly drying finish." - Score of 87 - Simpatico Espresso

 

Simpatico Dark Roast Arabica (Regular or Decaf)

Simpatico Espresso Roast (Regular or Decaf)

4. Carob English Toffee & Carob Pecan Honeymoons

Holiday treat idea! Queen Bee Carob candy is amazing! It's rich, creamy and comes as close to chocolate as you can without irritating the bladder. The manufacturer doesn't stint on flavor or size either. The carob English toffee is crunchy caramel hand dipped with thick carob and fresh, roasted almonds. To die for! Really! We absolutely love it!

Carob Honeymoons (aka Turtles)

Carob English Toffee

5. European Gourmet Bakery (Formerly Dr. Oetkers) Organic Baking Mixes

Just in time for your holiday baking fun, the Dr. Oetker line of baking mixes has been one of the most popular product lines for IC patients because they contain so few artificial ingredients! European Gourmet Bakery bought the Dr. Oetker's line in early 2014 .

Apple Cinnamon Muffin Mix

Oatmeal Muffin Min

Corn Muffin Mix

Vanilla Cake Mix - Vanilla Icing

6. OTC Neutraceuticals (Step One Interventions)

Prelief

CystoProtek

Cysta Renew

CystaQ

Desert Harvest Aloe

7. Bladder & Prostate Friendly Chair Cushions Back In Stock

Bladder & Prostate Friendly Chair CushionAnother new shipment of our Bladder & Prostate Friendly Chair Cushions has arrived. These sell like hotcakes! If you struggle with prostate, urethral, rectal or vulvar discomfort when you sit, you might find this cushion life saving! Custom made for the ICN with special foam, it has a long groove down the middle which reduces pressure on those sensitive bits making sitting at work, home or in a car much more tolerable. All four sizes are currently available but they'll sell out quickly. Get them while you can!

Learn more here!