Interstitial Cystitis Network Newsletter

This Week on the ICN! February 27, 2015

Sponsored by: Imprimis Pharma, Beaumont Urology - 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


Majority of Patients Now Struggle to Pay For Elmiron

With more and more patients reporting that the cost of their Elmiron® prescriptions are increasing and some sharing that it's been cancelled from their health coverage, the ICN launched a survey to explore pricing trends. The results were, in our opinion, staggering.

Of the more than 900 patients who participated, 67% shared that they were now struggling to pay for their medication with 35% sharing that they have to go without essentials to afford their medication.

18% of our survey respondents chose to stop taking Elmiron® because they could no longer afford it!

21% of respondents chose to stop Elmiron® due to side effects.

Out of pocket expenses for patients who were under insured or uninsured reached a new peak with 3.3% sharing that they are now forced to pay more than $1500 per month. Learn more about the study, survey results on side effects and what options patients are using when Elmiron is unaffordable in our latest IC Optimist magazine below.

 

IC Optimist Now Available

The Winter 2015 IC Optimist is now available! Our ICN subscribers should receive their copies in the coming week! The IC Optimist is the quarterly magazine of the Interstitial Cystitis Network, read by patients and medical care providers throughout the world! Individual subscriptions are $25 by e-mail and $50 in print.

In this issue:

  • Editorial: Is Interstitial Cystitis Caused by Anger? No! – One IC patient was recently told that her IC was the result of her anger about an ex boyfriend. We ask "How would you handle it?"
  • Feature Story: The Economic Toll of Elmiron – In this exclusive article, we share the results of an ICN survey which tracked pricing trends and rising out of pocket expenses and offer alternatives for patients who can no longer afford this medication.
  • Feature Story: The Stomach, Bowel & Bladder Connection – If you've suffered from stomach distress in addition to your IC and/or IBS, you aren't alone. A 2014 ICN research survey found that the great majority of IC patients struggle with chronic stomach complaints including gastritis, GERD, Gastroparesis and ulcers.
  • Self Help Tip: Ten Essential Tips For Cystoscopy With Hydrodistention – Though no longer the gold standard test for IC, a cystoscopy with hydrodistention is still used, particularly in the identification and treatment of Hunner's lesions. We share ten essential tips to help patients plan for and recover from this procedure.
  • The Latest Research – IC researchers continue to produce meaningful research studies to help us understand why and how IC occurs. The most surprising recent study found the Polyomavirus BK virus in patients with Hunner's Lesions but not in patients with glomerulations. This is the first confirmed viral connection revealed for a subset of IC and it's creating buzz in the IC world.
  • Ten Simple Things You Can Do To Feel Better Now
  • What You Should Know About Food & Pesticides
  • Consumer Alert – Certain IC may contribute to cognitive decline and dementia.
  • Fresh Tastes by Bev: Adding Spice To Life – if you're tired of the bland flavors found in the IC friendly diet, Bev Laumann offers plenty of new spices and flavors to play with
  • Patient Story: IC Friendly Snacks – IC patient Angela Atkins shares her list of favorite IC friendly "sweet treats" and "salty eats" for patients looking to satisfy those sneaky cravings!

Learn more about ICN Subscriptions

Buy an individual copy - print version

Buy an individual copy - PDF file

 

The Latest Research

The Society of Urodynamics and Female Urology (SUFU) is having their Winter meeting right now in Scottsdale Arizona. This professional group offers in-depth reviews of pelvic disorders for other medical professionals and provides a forum where the latest research is shared.

 

Hot Conversations in the ICN Support Forum - What patients are talking about!

This Patient Story Should be Required Reading at Every Medical School!

This is one of the most clear, concise and important patient stories posted by an IC patient on our site in years. As a young child, Ashley was unable to sit through class without using the rest room. The teachers didn't believe her. On long car rides, she would beg her parents to pull over so that she could find a bathroom. They didn't believe her either. Sound familiar?

As an adult, Ashley finally sought the opinion of a few urologists before she found the reason for her symptoms.... a pelvic floor so tight that it was unable to relax. In fact, Ashley had only urinated by "pushing" for most of her life leading to complete pelvic floor dysfunction. She wrote " I don't know what it feels like to have a relaxed pelvic floor because it's normal for me to always be doing a kegel." Read her story and share your thoughts here!

Stem Cell Treatments

I have been diagnosed as having a very severe case of IC with hunner's ulcers and severe pelvic pain. I was fortunate to be able to go to the California Stem Cell center in Palm Springs in August of 2012. Dr. Lander and the whole staff treated me with such compassion and professionalism I was really impressed. Most importantly, my symptoms started getting better in about 3 weeks. Read it here!

 

Newly Diagnosed Coaching

Designed for newly diagnosed patients, the ICN is proud to offer personal coaching for patients struggling with interstitial cystitis, chronic pelvic pain and its related conditions. You'll receive the best books on IC, as well as the opportunity to speak, in depth, with to most experienced IC coach in the country, ICN President Jill Osborne. She'll offer insight on current diagnostic methods and the six step treatment protocol provided by the AUA. She'll help you prepare for your physician appointments and track your treatments. She'll also help you learn how to prevent and/or manage IC flares.

This coaching package includes:

  • Book - The Proactive Patient (or) Heal Pelvic Pain (TBD during 1st coaching)
  • ICN Guide to Managing IC Flares
  • ICN Guide to the IC Diet
  • One 60 minute coaching session at the beginning of the coaching period
  • Three follow up 15 minute sessions to take your questions, help you prepare for appointments, discuss therapies, manage flares, diet questions and so forth.

Learn more here!

 

Interesting Blogs, Articles & Videos

 

New Pelvic Floor Clinic Opening in Boston

The Pelvic Health & Rehab team is opening their first east coast office, in Waltham MA on March 16, 2014. The clinic will be dedicated to the treatment of pelvic pain and pelvic floor dysfunction. Physical therapist Liz Rummer is relocating from San Francisco to run the clinic, which will serve patients in the greater Boston area.

 

Pelvic Health & Rehab

303 Wyman St., Suite 369

Waltham, MA

http://www.pelvicpainrehab.com

 

We're Looking For MD & PT Recommendations in Canada & USA

 

 

If you have a medical care provider who has helped you, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form.  We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.

Click here to search the ICN Find A Specialist database

Click here to recommend a medical care provider


Support Group Listings & Updates

Every year we ask support group leaders to check their information in our lists to make sure that it's accurate. If you are a member of a support group and/or the support group leader, please check your group listings. Send any changes or cancellations to: supportgrouplistings@ic-network.com

 

Recipe of the Month

Submitted by ICN Member Carole

Nomato Marinara Sauce

Ingredients

4 Red Peppers

1/3 cup olive oil

 

Clean and cut peppers in half. Coat each half with olive oil. On each half add the following:

1/2 tsp Garlic Powder

1/2 tsp Basil

1/2 tsp Oregano

1/2 tsp Parsley(If can tolerate)

1/4 tsp Pepper(if can tolerate)

1/4 tsp Salt(or as tolerated)

Bake in oven at 450 degrees until tender. Cool completely.Peel skin off and set aside.

 

Puree the following in a blender

1 14oz can sliced Beets(or 2 cups cooked)

1 14oz can IC friendly Pears (drained and rinsed)

1 14oz can sweet potatoes (or 2 cups cooked)

1 Cup pure Pear Juice (make sure IC friendly)

Add roasted Red Peppers

 

Pour the above into a large pot. Add the following:

1 tsp Garlic Powder

1tsp Pepper(if can tolerate)

1 tsp Salt(or as tolerated)

2 tsp Basil

2 tsp Oregano

1 1/2 cups sliced Mushrooms

3 Cloves crushed Garlic

 

In frying pan add:

2 Tblsp Olive Oil

1 medium chopped onion(if can tolerate or can use chives)

1 large chopped Green Pepper(if can tolerate otherwise use red)

1 Large chopped Celery Stalk

Fry until tender then add to sauce pot.

 

In frying pan brown 1 1/2 pounds of Ground Beef and add to sauce.
Simmer on stove top for at least 1 hour so the flavors will develop. Add more seasoning as desired and to taste/tolerance.

Read comments from patients who have tried it and how they adjusted their recipes to suit their own tastes and diet sensitivities.

 

 

What's New In the ICN Shop!

www.icnsales.com - 800.928.7496 or 707.433.0413

CystoProtek Update

CystoProtek deliveries have been delayed several times due to weather. We are still trying to receive it weekly but it is flying off the shelves. We sold eight cases in less than a day on Friday. So, if you want some bottles, make sure you sign up for sign up for the e-mail notification on the product details page in our store. You'll receive an e-mail when it is placed back in stock. But please make sure that you act quickly. It goes fast every week.

ALL 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!

Releveum For Tender, Sensitive Skin, Vulvodynia

Releveum For Tender Skin 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!

OTC Neutraceuticals (Step One IC Interventions)

Prelief

CystoProtek

Cysta Renew

CystaQ

Desert Harvest Aloe