Interstitial Cystitis Network Newsletter

ICN E-Newsletter - August 2016

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

Quick Links: Join the ICN - 24/7 ICN Support Forum - Find A Specialist - Make A Donation

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

 

ICN Features

IC Patient Develops Aneurysm After Using Cipro

Lyme Disease and Interstitial Cystitis

If you are an IC patient not improving with treatment, it's time to be proactive and ask "Why am I getting worse?" and "Could something else be contributing to my pain? (i.e. pelvic floor dysfunction, UTI, candida, etc. etc)" The AUA Guidelines for IC/BPS clearly state that if a patient is not responding to treatment and/or is progressively getting worse, it's time to revisit the diagnosis. And, for some patients, revisiting that diagnosis requires a look at rarer causes of bladder symptoms, such as Lyme Disease. Read it now!

 

IC Patient Develops Aneurysm After Using Cipro

Should IC Patients Drink Cranberry Juice? No!

For anyone who has struggled with urinary symptoms (frequency, urgency, pressure and/or pain), the first suggestion they often hear from well meaning family members and friends is to drink cranberry juice. And, perhaps for a patient struggling with recurring UTI's, cranberry may have some benefit (more on that later) but for the interstitial cystitis patient, cranberry products can produce agonizing symptoms. Read it now!

 

IC Patient Develops Aneurysm After Using Cipro

Recurring Bladder Infections Are Often Linked to Menopause

This morning I took a phone call from Claire*, a 70 year old woman who was struggling with recurring, confirmed bladder infections. Diagnosed with IC two decades ago, her infections began only recently and occurred about every 4 to 6 weeks. After several rounds of antibiotic treatment, she was very frustrated. "Why were they happening? Does this happen to other IC patients?" she asked. My answer is "Yes, for a small population of patients, recurring UTI's do occur. One common risk factor is menopause." Read it now!

IC Awareness Month Kicks Off

 

Every September, IC patients around the world unite to raise awareness about interstitial cystitis, bladder pain syndrome, hypersensitive bladder syndrome and chronic pelvic pain. All IC patients, support group leaders and national organizations are invited to participate! Your voice counts! Here's how you can participate:

Spread the word through social networking

Write a few sentences or even a story about IC Awareness Month on your blog or "what's on your mind statement." Every day in September, share our IC Daily Fact from our website!

Get politically active

Encourage your local, regional and national politicians to pass a proclamation to honor IC Awareness Month. To make this easy for you, use the letter we've placed on the campaign website. Learn more here!

Send out our press release

Send our press release to your local and regional paper, asking if they would do a story about IC and IC Awareness Month. The press love personal, local stories. Share a few paragraphs about your life with IC in your community, as well as any obstacles you have faced with finding doctors, getting pain care and/or the public perception of bladder diseases.

Educate your doctors

Bring an IC Awareness Month poster (which you can print from our website) and our free IC Fact Sheets to each of your physicians and nursing staff to place in their offices and waiting rooms. Share the latest IC articles with your physicians. We have a variety of handouts on our website!

Make a donation

Make a donation directly to an IC research center. We support Beaumont Hospital in Royal Oak Michigan for their cutting edge IC studies.

Mobilize your support group

If you're in a support group, ask them to participate in IC Awareness Month. They should have a meeting in September and, if possible, send out our press release. You could do an activity, a bake sale, garage sale to raise money for research. You could organize a walk for awareness or approach a local TV station and ask for a story on IC. The sky is the limit. Dare to be bold! If there is no support group in your area, consider starting a new group to provide support and build friendships among patients who often feel very isolated and alone. If you need help, give us a call at: 1-800-928-7496!

 

2016 Medical Care Provider Of The Year Award!

Nominate Your Urologists, Urogynecologists and Physical Therapists!

Do you have a doctor or physical therapist who treats you wonderfully? Each year, we want to encourage and acknowledge clinical care providers who provide excellent care for IC and pelvic pain patients. This includes urologists, OB-GYNs, physical therapists, nutritionists, pain specialists and so forth. These are the medical care providers who:

  • listen to their patients
  • who take the time to answer questions
  • who explain treatment choices carefully and thoughtfully
  • who treat patients and family members with dignity and respect
  • who give their patients hope and encouragement

It's about time that we publicly recognize those few medical professionals who really do treat IC patients with compassion and kindness!

 

How To Nominate

Click here to fill out our nomination form!


IC Awareness Month Contests - Winners Will Receive A Kindle or iPad!

#1 - Poster Contest

Bring out your inner artist and create a poster for IC Awareness Month sharing your own interpretation of #lifewithic. Light or dark, floral or portrait, encouraging & hopeful or a message about how IC has changed your life, every patient poster tells an important story that helps spread the word about IC. We welcome all mediums, electronic or in print. All ages are welcome! All posters will be added to our websit!

Prizes:

  • The winner will receive an iPad or Kindle!
  • Runner's ups will receive Amazon or ICN Gift Certificates.
  • Additional Prizes To Be Announced

Requirements:

  • It must say IC Awareness Month and include the URL: icawareness.org
  • It must fit on an 8.5 by 11" piece of paper

Due Date:

Entries by September 30, 2016 to info@icawareness.org or can be mailed to: IC Awareness Month, 5636 Del Monte Court, Santa Rosa CA 95409

#2 - Meme Contest

Funny, irreverent, witty, bold and often ridiculous, meme's make a statement. A funny or shocking meme can be shared thousands of times across the internet where they could inspire patients to actually google IC. Last year, we had dozens of funny, irreverent and powerful memes that truly made an impact. They were shared thousands of times across the internet and were a big part of our IC Awareness Month campaign.

How Can I Make A Meme?

Several websites offer free meme making services. You can pick your favorite picture, add text and then share it with your friends. Here are some services that we like!

Requirements

  • Required – It should say "Interstitial cystitis"or "IC"
  • Optional – It can say icawareness.org

Prizes

  • The will receive a Kindle Fire or Apple iPad (First Place)
  • $50 Amazon Gift Certificate
  • $25 Amazon Gift Certificate
  • Additional Prizes To Be Announced

How Can I Submit My Meme?

It's very easy. Just share your meme on Facebook, Twitter, Pinterest and anywhere else you frequent.

#3 - Tweet Contest - Tweet Out Funny or Serious Moments About #lifewithic

If another person tells me to drink cranberry juice, I might scream! #lifewithic

New this year, we're using Twitter to share the story of IC. When something happens, good or bad, funny or infuriating, we hope you'll tweet it using the hashtag #lifewithic. We'll be searching twitter for the right hashtags to determine the winner!

Samples:

  • Why'd I drink that coffee? My bladder is on fire! #lifewithic
  • Can Elmiron get anymore expensive? Wait. Don't jinx it. #lifewithic
  • Another doctor who doesn't believe that IC is painful. #lifewithic
  • (Just have fun with it but also share the real story of ife with IC)

Requirements

  • It must say #lifewithic
  • Optional - #icawareness or #icawarenessmonth if room

Prizes

  • The will receive a Kindle Fire or Apple iPad (First Place)
  • $50 Amazon Gift Certificate
  • $25 Amazon Gift Certificate

 

Upcoming Events

 

New Patient Webinar Featuring Dr. Geo Espinosa

Mark your calendars for a live and interactive educational event. Dr. Geo Espinosa will be featured in a patient webinar during the September IC Awareness Month campaign where he will be answering your questions and sharing his unique perspective on supplement use.

When: Wednesday, September 21, 2016 5-6PM PST, 8-9PM EST.

Click here to learn more & register!

Second Pudendal Neuralgia Conference - November 5, 2016

The Pudendal Neuralgia Association is holding their second national conference on November 5, 2016 in Waltham MA. Learn more about the speakers and event at: http://pudendalassociation.org/conferences.html

 

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

Louisa Joy Wise

IC Diet Project - Savor The Last Flavors of Summer On The Grill

Wisps of fragrant barbecue smoke drifting over fences, the sublime sweetness of a ripe melon slice, and the sound of laughing kids running through sprinklers– this is how we like to remember the last weeks of summer and the first days of Fall. For much of the country, late September and early October are part of those lazy-hazy final days of heat before the coolness of autumn sets in. Read more!

 

New "Living With IC" Video

IC Treatments in 2016 - Do you know the six steps of treatment?

New ICN Video - IC Treatments in 2016Are you confused about your IC treatment options? Do you believe that you've tried everything? Not sure what you should try next? ICN President Jill Osborne reviews the AUA Six Steps of Treatment for Interstitial Cystitis. This simple approach to IC treatment puts your safety first and works for many! Watch this video for a basic introduction to your IC treatment options. Let us know what you think! @icnetwork @icnjill #icsubtypes

Watch it On YouTube


ICN Research Center

Clinical Trials Seeking Participants

We have an abundance of clinical trials currently seeking participants. Patients participate for a variety of reasons. Some have exhausted their treatment options and are looking to try something new while others participate because they simply can't afford other therapies, such as Elmiron. In most cases, the medications and medical care you receive in a clinical trial is offered at no cost. Participating in a clinical trial is also a selfless gift to the IC movement. IC patient Meredith Small shared her clinical trial experience in an article "My Body On The Line - Take Me, For Example" for the Washington Post that is worth a read if you are on the fence!

 

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: 79,1591 - Posts: 627,532 - Active Members: 42,387

 

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

Summer IC Optimist Released

 

The Summer IC Optimist was released earlier this month. If you prefer to read your IC materials in printed form, our quarterly IC Optimist Magazine offers feature stories exclusive to the ICN as well as our favorite articles and blogs!

In this issue:

(1) Editorial: Eight Potential Causes of Bladder Injury

(2) The Latest Research – Why Are IC patients Deficient in Some Good Bacteria?

(3) Feature Story – Are You Struggling With Loneliness?

(4) Remarkable Patients With IC – Louisa Joy Wise

(5) Meet The IC Expert: Dr. Eliot Lander

(6) Inside AUA 2016

(7) Real Men Get Real Pelvic Pain

(8) Consumer Alert – IC Patient Develops Aortic Aneurysm After Taking Cipro

(9) When Furniture Makes You Sick

(10) The Latest Clinical Trials

(11) IC Diet Project: Savor The Flavors of Summer

Become a subscriber!

Order PDF File - Instant Access

Order Print Copy

Mama Strut Reusable Hot & Cold Packs

New in July 2016 - 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.

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!

Low Acid Coffee

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! 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 this brand first!

 

Simpatico Low Acid Arabica Coffee Decaf

Simpatico Low Acid Decaf

 

Simpatico Low Acid Arabica Regular

Simpatico Low Acid Regular

 

Best Sellers

CystoProtek and our carob candies are NOT heat stable and are very difficult to ship during the hot summer months. In fact, if it's over 90 degrees, we will NOT ship it because they may melt. We are reminding everyone who lives in warm areas to order early and get your summer supply this or next month! The sooner the better!

 

Acid Zap

Acid Zap to enjoy some of the riskier summer foods!

ProSirona & Neuroquell
ProSirona & Neuroquell for pain relief
MultiRight Low Acid MultiVitamin
MultiRight Low Acid MultiVitamin
ICN Bladder & Prostate Friendly Chair Cushion
Chair Cushions for long summer car trips with family and friends!

Natracare Intimate Wipes

Natracare Intimate Wipes

Heathers Acacia Fiber
Acacia fiber to stay regular and reduce constipation

OTC Neutraceuticals (Step One Interventions)

Prelief

CystoProtek

Cysta Renew

CystaQ

Desert Harvest Aloe