The Latest News From The IC Network – January 2016
1. The 2015 Providers Of The Year!
Doctor of the Year – Dr. Robert Evans – Wake Forest University
PT Of The Year – Karin I. Westlin-Boyer PT (Salt Lake City, UT)
Karin Westlin-Boyer is empathetic, sensitive and responsive to the needs of her patients. But what caught our eye is that she, at no charge, made a trip to this patients cardiologist with her as they explored the pros and cons of using TENS therapy on her pelvic floor. It is incredibly rare to see a health care provider take this step. Read more!
PT Of The Year – Jennifer Rutkowski MPT (St. Louis, MO)
When a child struggles with pelvic pain, they are often ignored or disregarded by medical care providers who suggest that it’s a way of seeking attention or that the child will grow out of it. For decades, children with IC have received minimal care and for those who might have a pelvic floor dysfunction, care has been virtually non existent. Jennifer Rutkowski earned this recognition for her compassionate care of a young girl with IC. Read more!
PT of the Year – Rhonda Fiorello MPT, WCS, PRPC (Reno, NV)
Patients in rural areas and small towns struggle with medical care providers who are often behind the times, especially in the rapidly evolving treatment of interstitial cystitis and pelvic pain. Physical therapist Rhonda Fiorello offers pelvic floor physical therapy services for MEN and WOMEN in Reno, Nevada and the many surrounding small towns and communities. Her clinic has also started a support group for pelvic pain. Read more!
2. The Latest Research
Could IC Flares Be Caused By Candida?
One of the biggest challenges that both patients and physicians struggle with are the sudden, often unpredictable, flares which occur in most IC patients. Why do they occur? How do they occur? Are bacteria involved? Are they caused by eating the wrong foods? Over the past three decades, patients have shared many stories of flares that have occurred after eating meals, traveling, periods of high stress and so forth. The MAPP Research Network has released new research suggesting that fungal candida infection may also be involved. Read more!
3. Interesting Blogs/Feature Stories
EAU Grants Orphan Drug Status for Pentosan – It Could Discourage Generics
Bene Arzneimittel GmBH, a german pharmaceutical company, announced that Pentosan polysulphate (aka Elmiron) has been officially registered as an orphan drug for the treatment of interstitial cystitis by the European Medicines Agency, EMA. Unfortunately, this ruling appears to block generic manufacturers from offering more affordable medication in the EU. Read more!
Does Big Pharma Control The IC Movement?
On Facebook last week, someone suggested that the IC movement is controlled by large pharmaceutical companies pulling the strings of IC organizations. ICN President Jill Osborne responds stating that, in fact, big pharma abandoned the IC movement almost a decade ago. Read the full blog here!
4. IC Self Help Strategies
Shopping For IC – Supermarket Strategies
The IC Diet is, at its core, a very healthy, simple and natural diet. You’ll be shopping the outer edges of the supermarket rather than the center aisles which contain most of the pre manufactured and junk foods. Some experts suggest that if the product is made in a laboratory, it’s not healthy food and we agree with that. Get back to the basics and eat real food. If you’re addicted to junk food, this is going to be a big change. Rather than buying premade foods (i.e. like boxed Macaroni & Cheese, canned soups, etc.), we suggest making it homemade where you know exactly what’s put in it. When possible, also eat organic. Organic foods are less contaminated with pesticides and chemicals which could irritate the bladder.
What your Potty Posture Says About Your Bowel Health
If you’ve struggled with constipation, IBS and a host of other bowel and bladder related issues, you may have found yourself using all sorts of techniques to empty your bowels. Some say squatting is the most natural position because it helps to straighten the lower bowel to ease the way while others prefer to sit straight up on the toilet. If “effort” is required, patients often lean forward, perhaps rock bit backwards and forwards. If you find you’re struggling to have a normal bowel movement regardless of the position you choose, this blog is for you! Read More!
The Ultimate IC Friendly Bathroom
When I start a New Year, I like to get organized. It’s out with the old and in with the new and that includes my bathroom where, like most IC patients, I spend a considerable amount of time. Having IC is challenging and I want to make sure that I have some small pleasures that will make those restroom moments more bearable. To avoid unnecessary bladder infections, I also need to make sure that my bathroom stays clean. Read More!
5. Upcoming Events
Alliance For Pelvic Pain Conference – March 20-22, 2016
Join some of the top chronic pelvic pain specialists in the country fora a 3-day educational retreat in New York City. Dr. Deborah Coady, Dr. Robert Echenberg, pelvic floor physical therapist, Amy Stein, and counselors, Nancy Fish and Alexandra Milspaw collaborate to create a comprehensive overview of what you need to know and where you need to go to get the help you need.
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.
This weekend will provide a solid foundation of knowledge, skills, and comprehensive treatment modalities that will help you get back on track towards managing and healing your chronic pelvic pain.
When: March 20-22, 2015
Where: Honor’s Haven Resort & Spa, Ellenville NY
6. 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!
- Lipella Study Seeks Men & Women With IC/BPS
- New LiNKA Study Launched In North America Seeks Patients With Hunner’s Lesions (Three new locations added)
- New LiNKA Study Launched In North America Seeks Bladder Pain Patients
7. Patient Support – 40K members, 619,870 Posts
Hot Topics In The ICN Support Forum
- Elmiron – Does it Work? – An IC patient in the UK asks “Does Elmiron work?” to her American and Canadian IC brothers and sisters. She would love to hear your experience with this medication, both pro and con!
- I’ve been well for some time now! – IC patient Annabells shares that her recovery began with a visit to a functional MD, discovered that she had systemic candida and a leaky gut. While she still takes Elmiron, her symptoms have improved. Her methods, though, could be considered controversial by some. Check out this very interesting discussion string!
- Eating extremely healthy yet there’s still pain – IC patient Darby says that she’s completely overhauled her diet but is still struggling with pain. She asks if she should still follow the IC diet?
- Feel like my life may be over – Amy, a newly diagnosed patient, can certainly use your encouraging words. Her symptoms begin this month and she’s been on a rollercoaster of discomfort and worry! Patients are rallying around her but a few more encouraging words would be welcome!
8. What’s New In the ICN Shop! – www.icnsales.com – 800.928.7496
1. MultiRight Back In Stock
We’re happy to share that MultiRight, the only low acid multivitamin on the market, is now back in stock! There was an unanticipated delay at the manufacturer when another company placed a larger order that put ours behind several weeks. GRRR! The good news is that it’s back and better than ever.
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.
Made from only the finest ingredients, Stephen’s Gourmet White Hot Chocolates offer a warm, comforting cup of hot goodness without the irritation of traditional milk chocolate. If you’re craving hot chocolate on a cold winters evening, we suggest you try this one first!
Comes in two flavors:
3. Pumpkin Spice Herbal Tea
This doesn’t come in a typical tea bag, but a small fabric bag to which contains a yummy collection of loose herbs. Of all the caffeine free rooibos herbal teas that I’ve tried, this is my new favorite and I’ve got a cup of it on my desk almost every dayIt hasn’t flared my bladder yet and I’ve made some really strong cups! Try it, you might like it too!
INGREDIENTS: Rooibos, natural pumpkin flavor, cinnamon, cloves and nutmeg.
4. OTC Neutraceuticals (Step One Interventions)
5. Missy J’s Truffley Treats
If you miss chocolate, you must true the absolutely divine Missy J’s Truffley Treats. Made in Colorado buy a small, woman owned business, she has mastered the art of making truffles with incredibly good carob. We double dog dare you to try them!
Coconut, Almond & Sea Salt Truffles – a creamy, nutty, taste of the Tropics without the airfare! The hint of sea salt adds an intriguing ocean twist which will have you coming back for more.
*VEGAN NO CAFFEINE, NO CANE OR REFINED SUGAR, NO DAIRY. UNRIVALED DELICIOUS CAROB TREATS!
Almond’s Gone Coconut – This is the gluten free version of our popular coconut, almond, sea salt. The creamy, nutty, taste of the Tropics without the airfare! The hint of sea salt adds an intriguing ocean twist which will have you coming back for more.
6. Bladder & Prostate Friendly Chair Cushions Back In Stock
Another 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!
Please note that in our latest shipment, the “soft” cushions aren’t quite as soft as normal. They are more “medium.”