April 2016 ICN E-Newsletter
Interesting Blogs/Feature Stories
How Does Interstitial Cystitis Begin
One of the most recognizable figures in research and clinical care, Dr. Lowell Parsons has treated 9000 IC patients in his 35 year career at UC San Diego. A legend in the IC movement, he developed the only oral medication approved for treatment of IC, Elmiron, as well as a bladder instillation treatment now known as Hep-Lido-A. In his latest research study, he reveals new insight into how early IC begins in many patients (80% report symptoms before the age of 30 and over 50% reported them beginning before the age of 20) as well as his theory about IC. Read it now!
Is Vaping Safe For Interstitial Cystitis?
We’ve long known that tobacco smoke was damaging to the urinary tract and deadly for patients who develop bladder cancer. What about vaping? Is it safe?? Could it cause IC flares? Jill Osborne shares both the research and her thoughts on vaping for patients with a injured bladder wall. Read it now!
A Remarkable Patient With IC – Janice Schmidt – Award Winning Winemaker
Since starting a small family winery five years ago, Janice Schmidt, winemaker at Estate 1856 Winery, has thrived. Last month, her 2013 Malbec & 2013 Petit Verdot received coveted Best of Class awards in at the San Francisco Chronicle Wine Competition, scoring above more than 6000 other wines. Her Duvall’s Prospect Bordeaux Blend won a Platinum Medal at the 2015 Critics Challenge International Wine Competition. She’s won double gold and gold medals in almost every competition she’s entered, including the most prestigious award in the Sonoma County wine industry, the Harvest Fair Sweepstakes Award for her 2010 Bordeaux Blend. Oh, and she has IC. Read more!
New IC Optimist Released – Spring 2016
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! This issue is being sent to our subscribers this week!
In this issue:
- Editorial: Does “Big Pharma” control the IC movement?
- Pelvic Floor Therapy – Does it work? –
- Insights from the MAPP Research Network
- Could IC Flares Be Caused by Candida
- Remarkable Patients With IC
- Is Vaping Safe For Interstitial Cystitis
- Five Ways To Not Fall Victim to Chronic Pelvic Pain
- Clinical Trial Announcements
- Fresh Tastes by Bev – Baked Salmon & Scones
- Consumer Alert – Beware the Non-Organic Strawberry
ICN Food List App Updated For iOS (iPads & iPhones)
We’re happy to announce that the ICN Food List app for iOS (Apple pads & phones) has been updated for the new operating systems and retina displays. It’s also be completely reworked and simplified to make it yet easier to use. If you’ve used it on other devices, you can download your upgrade at no charge. New users can buy it for just $1.99. Learn more about our Android and iOS apps here!
Upcoming Patient Events
Weekend Educational Retreat For Women and Men With Chronic Pelvic Pain
For the third year in a row, the IC Network is a proud sponsor of the Alliance For Pelvic Pain, an excellent three day patient retreat featuring an outstanding panel of pelvic pain experts. If you happen to be in the Northeast, this event is well worth your attending.
This weekend will provide a solid foundation of knowledge, skills, and treatment modalities that will help guide you towards managing and healing your chronic pelvic pain. 3-day package includes Alliance Retreat lectures and activities,2-night stay at Honor’s Haven Resort, and all meals Friday dinner thru Sunday lunch.
This retreat is created for female and male patients coping with chronic pelvic, sexual and genital pain with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Vulvodynia, Vestibulitis, Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Non-bacterial Prostatitis, Pudendal Neuralgia, Lichen Sclerosis, Endometriosis, Chronic Pain, and other pelvic and genital pain disorders. The most up-to-date research guides the treatment protocols reviewed and practiced throughout the weekend.
Featured speakers:
- Dr. Deborah Coady
- Dr. Robert Echenberg
- Amy Stein Pt
- Nancy Fish
- Alexandra Milspaw
Early registration has been extended to May 6, 2016! Learn more!
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!
- LiNKA Study For Hunner’s Lesions Adds More Locations
- LiNKA Study For Bladder Pain Patients Adds More Locations
24/7 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.
IC Patients Outstanding Success Story
We love it when patients come back and share their stories, especially when they have have improved. Today, you’ll find an inspirational and incredibly insightful patient story by ICN member Jinny Jean! She shares how she not only improved her health dramatically and how she maintains it today. Love, love LOVE her passion, her strategies and her approach to IC! Read it here!
Symptoms Awful When Sleeping
An IC patient DawnaJean is struggling with night time pressure and pain in her bladder. She’s not, however, following the IC diet. Could you please give her some encouraging words about how diet has improved your sleep quality? Read more
What can I use topically for a burning vestibule
Every vulvodynia patient understands that agony that occurs when a vulvodynia flare strikes. IC patient Songbird is looking for ideas that will soothe the burning she is currently struggling with. Read more!
Really Don’t Know What To Do
IC patient Iva is also struggling with stage four breast cancer and is in a terrible flare due, possibly, to cancer treatment. She’s looking for insight from other patients who have gone through cancer therapy. Please help her if you can! Read more!
IC with a sick child
ICN member teachmemath has IC and is struggling with a chronically ill child. She’s asking for prayers! Read more!
Eating extremely healthy yet there’s still pain
Here’s an excellent discussion of the pros and cons of diet not only for the bladder wall but also patients who struggle with pelvic floor dysfunction. If you’re not sure that diet is important, check this out! Read more!
How long before I know if my Cysto and Hydrodistention worked?
ICN member CP just had a hydrodistention and she’s wondering how soon she should know if the procedure worked for her. She’s asking patients to share their recovery times with hydrodistentions Read more!
National Call In Day
The Interstitial Cystitis Association has, for many years, done some remarkable political activism in Washington DC. Tomorrow, April 19, 2015, is their national call in day where they ask you, the patient, to make phone calls to your representatives to encourage support for various issues related to IC. If you’ve got just a few minutes to spare, we encourage you to join in and make those phone calls. You can find your representatives and senators by visiting www.house.gov and www.senate.gov
Call and ask to speak with their health staffer and then ask them to:
- Support the National Pain Strategy
- Provide full funding for the National Institutes of Health research budget
- Continue the inclusion of IC in the DOD Peer Reviewed Medical Research Program
- Share with them how IC has affected your lives!
Reach out to them on Facebook and Twitter as well! Don’t forget your #icawareness hashtag!
Recipe of the Month – Carbonara Pasta
Ingredients:
1/2 pound MILD fresh italian sausage
4 slices uncured bacon
1 box Spaghetti (Wheat or Quinoa), hot, cooked and drained
1/4 cup butter or margarine
1/2 cup fresh, chopped parsley
1/2 cup grated or shredded parmesan cheese
Salt & Pepper To Taste
Instructions:
Prepare and cook your spaghetti as per the instructions on the box. While the pasta is cooking, remove casing from sausage and crumble into a frying pan. Finely chop the bacon and add to sausage. Cook on medium low, stirring constantly, for about ten minutes until browned. Drain pasta and then place back into the pan you cooked the pasta in. Add the butter or margarine to the pasta and stir until the pasta is well coated. Add the cooked bacon mixture, chopped parsley and parmesan cheese. Stir until ingredients are well distributed. Serve hot, topped with more grated parmesan cheese.
Serve with a mixed green salad of your choice, hot bread and you’ve got a simple, easy meal.
What’s New In the ICN Shop! – www.icnsales.com – 800.928.7496
1. Planning For Warm Weather – Order Now For The Summer Months
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!
2. Ancient Harvest Gluten Free Quinoa Pasta
For those of you trying to follow a gluten free diet, we are carrying what we think is the best pasta on the market. Made with quinoa and corn, Ancient Harvest pastas taste fabulous! We’re carrying traditional spaghetti and elbow macaroni just in time for lighter pasta meals and pasta salad! Definitely worth trying! Learn more!
3. OTC Neutraceuticals (Step One Interventions)
4. MultiRight Back In Stock
MultiRight is the only pH neutral, low acid multivitamin which means that it’s more bladder friendly than ever! MultiRight is a proprietary formula that delivers everything you need in a multivitamin and mineral complex without the high acid levels that can contribute to bladder or stomach irritation in sensitive people. A brain child of the Interstitial Cystitis Network, it was developed and manufactured by Farr Labs LLC. We are thrilled that Farr Labs listened to our idea and the needs for patients who are sensitive to find a vitamin that is lower in acid and thus less irritating to our tender bladders.*
Why is a low-acid formula helpful? If you have a sensitive bladder and/or stomach, you know just how difficult it is to tolerate coffee, orange juice and, yes, even a simple multivitamin. Patients with interstitial cystitis, prostatitis or stomach ulcers, for example, find it very difficult to tolerate conventional vitamin supplements often due to their high acid levels.
5. Healing The Pain “Down There”
This 4 DVD series was produced by a team of multi-disciplinary professionals (ob-gyn, pt, etc.) and an incredibly motivated patient who wanted to make a difference. Their point is simple. When you have pain “down there”, it’s very difficult to determine where the pain is coming from. This guide will not only help patients learn this, but also offers clear insight and self-help strategies for pelvic pain and pelvic floor dysfunction.
Each kit also comes with a welcome guide that includes a vaginal health guide, vaginal canal map, tips for managing constipations and tips for approaching and mantaining sexual health. Learn more!
