Interstitial Cystitis Network Newsletter

This Week on the ICN! January 16, 2015

Sponsored by: 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


Three Surveys You Can Take TODAY to Help The IC Movement

Survey #1 - Elmiron and IC: Cost, Side Effects & Effectiveness

You're not alone if you've noticed a dramatic increase in the price of Elmiron and/or that your health insurance company has reduced or dropped coverage. We're trying to gather essential data on its rising costs, insurance coverage (if any), out of pocket expenses, side effects and if you've found it helpful. Please take this quick survey today and share it with your IC friends! Take The Survey Here!

Survey #2 - Defeat IC Patient Survey

A new IC educational campaign is being launched in Spring 2015 called "Defeat IC." This survey is helping project organizers create a campaign truly useful to the IC patient community. Please Take The Survey Here!

Survey #3 - Menopause and IC

We'd like to learn more about how menopause affects the average woman with IC. Have your urinary symptoms worsened? Got more frequency? Urgency? Pressure or Pain? Have you noticed irritation in the urethra? Struggling with incontinence and a weakening pelvic floor? That's also a possible result of aging. If you're a woman going through menopause and/or are perimenopausal, please help us understand just how this can impact IC. Take The Survey Here!

 

Child With IC Needs Help - Doctors and Treatments

I write to you with a request for help on behalf of a ten year old with IC who is struggling to find a physician. Her mother is seeking the names of urologists or pediatricians who are knowledgable and experienced in treating young children with IC. She is also seeking stories, advice and ideas from other parents.

#1 - Could you please share the names (and city) of any urologists that you've worked with who are willing to work with children with IC??

#2 - Can you please share what bladder therapies AND pain care tips you have used for your child with IC?

#3 - Please share your child's story with IC so that we can let other parents and children know that they are not alone.

E-mail your response to: childrenwithic@ic-network.org. Comments and suggestions will be sent to the parent of this ten year old AND be compiled in a future article for our website.

 

Best of IC & Pelvic Pain Moments of 2014

  • Best IC Moments of 2014Most Promising IC Treatment
  • Most Innovative Therapy of 2014
  • Best Patient Rant of 2014
  • Best IC Blog of 2014
  • Best Pelvic Pain Blog of 2014
  • Best IC Patient Creative Project of 2014
  • Best IC Patient Fundraising Project
  • Best IC Book of 2014
  • Best ICN Editorial of 2014
  • Best Clinic News of 2014
  • Best Infographics of 2014
  • Best About Face of 2014

See the Winners Here!

 

Research & Clinic News

Pelvic Pain Rehab Opens New Practice in Boston

One of the best pelvic pain physical therapy groups on the west coast have opened their first east coast clinic in Boston MA. Read their website here!

Two IC Pain Phenotypes Confirmed

Canadian IC researchers Curtis Nickel and Dean Tripp continue the efforts to determine distinct subgroups or phenotypes in the IC patient population. They conducted a study of 173 women with IC determining that two distinct phenotypes could be established based upon the location of pain, including (1) patients with only pelvic pain vs (2) pelvic pain beyond. This supports other studies which suggest that patients with bladder only pain represent a different group and, perhaps biological process, than patients who have IC and other pain related conditions. Source

Electrocautery Found Safe and Effective For Treatment of Hunner's Lesions

Researchers at Beaumont Hospital (MI) shared a six year study conducted in one urologists office who performed 214 EC procedures on 76 patients. Overall 89.6% of patients reported symptom improvement after EC, with 56% having marked improvement. 98% said that they would undergo EC treatment again. Unlike other methods, this procedure was not associated with diminished bladder capacity. Source

Chronic Stress Increases Bladder Pain Sensitivity In Rats

Researchers at UCLA found that anxiety prone rats exposed to chronic stress developed visceral bladder hyperalgesia in addition to increase frequency and other anxiety related behaviors. This comes as no surprise given the thousands of IC human patients who have shared that anxiety and stress can trigger IC flares. Stress causes a variety of systemic effects, as well as an increase in pelvic floor muscle tension. If stress and/or anxiety is an issue in your life, we encourage you to take a class at a local hospital or, perhaps, talk with a counselor who can help you build better stress management skills. ICN President Jill has frequently shared that the anxiety class that she took, Phobease, changed her life for the better in many ways. Source

Cost Effective Alternative Treatment for Recurrent UTI's

Researchers in Lebanon share two case reports of women struggling with recurrent drug resistent E-Coli infections with natural products (parsley, garlic, L-arginine, probiotics and cranberry). Strangely, the authors refer to interstitial cystitis a few times in the article BUT it appears that they really don't understand the difference between IC and UTI. Their recommendation of cranberry is clearly not appropriate for the IC patient though the probiotics and L-arginine are commonly used. Source

 

Interesting Blogs, Articles & Videos

 

Thank You For Your Generous Donations

Thank You For Supporting The IC Network

We would like to say {{{{THANK YOU}}}} to all the patients and care providers who made a donation to the ICN this past holiday season. From $25 to $500, your generosity helps ensure that we can continue our work! 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)

 

Consumer Awareness

Common IC Medications, Anticholinergics, May Post Risk For Seniors

Did you know that several of the medications commonly prescribed for bladder disorders, known as anticholinergics, can adversely affect brain function? Anticholinergics block acetylcholine, a chemical messenger that plays a critical in memory and cognitive function. Amitryptiline, oxybutynin, hydroxyzine and even some over the counter cold medicines such as Tylenol PM can have anticholinergic effects that, in seniors, can result in gradual cognitive decline. Read the full article here!

 

ICN Patient Support Center

There's nothing quite so comforting nor calming then walking into a room with people who understand the struggles of IC. Support groups are a great place to get the latest information, learn about the best care providers in your region and, of course, make new, vital friends. The ICN offers several support opportunities.

Wanted! Support Group Leaders

Just today we learned that one of the longest running support groups in the USA, the Phoenix AZ support group, is now cancelling their meetings and will only be offering support by phone. LIke several others in the last year, these groups struggle not only with attendance but finding patients who are willing to step forward and carry the load of running a group.

Support groups (and their leaders) are ambassadors for patients in their local communities. They work with and/or educate patients, work with local clinicians, support local researchers, coordinate IC Awareness Month activities and, perhaps, with the media, government entities and so forth. It's immensely gratifying.

If you're interested in becoming a support group leader, please visit the ICN Support Group Resource Center for tips on how to begin your group, learn what it takes to be a leader, scheduling meetings, group leader survival tips and more!

 

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

 

 

You've asked. You've pleaded. You've often been desperate to find a urologist who can treat your IC. We're collecting names of compassionate, knowledgeable care providers (urologists, urogynecologists, physical therapists, pain specialists, wellness coaches) in Canada and the 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


Recipe of the Month

Submitted by ICN Member Bladderella

Creamy Chicken & Bacon Casserole (aka Crazy Good Casserole)

Ingredients

4-5 boneless, skinless chicken breasts

6 strips of high quality, uncured bacon without preservatives – cooked and crumbled

2 cans cream of chicken soup (Low sodium, no MSG)

1/2 cup milk

2 cups shredded Monterey Jack cheese

1 box (16 ounces) dried spiral pasta

1 tablespoon garlic powder

Salt and pepper to taste

 

Directions

1. Cook and crumble bacon. While bacon is cooking, cut chicken into bite-sized chunks. Set cooked bacon aside for later use. In the same pan, cook chicken in bacon drippings. Add garlic powder and salt and pepper to taste.

2. While chicken is cooking, prepare pasta according to directions. Spray a 9×13 baking pan with non-stick cooking spray. Preheat oven to 400F.

3. Drain pasta, return to pot. Add chicken, both cans of cream of chicken soup, ½ cup milk, 1 cup of Monterrey Jack cheese – stir to mix well. Pour into prepared baking dish.

4. Top with crumbled bacon. Top with remaining cup of Monterey Jack cheese. Bake at 400F for about 20 minutes, just until cheese is melted and beginning to brown on top.

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

 

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 VERY 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. CystoRenew Back In Stock

Cysto RenewAfter a three month outage due to a factory software transition, we are please to share that Cysto Renew is now back in inventory. Cysto Renew, developed by Dr. Geo Espinosa, is a unique combination of ingredients designed to help calm the bladder and support healthy functioning of the urinary tract system.† Each ingredient researched by Dr. Espinosa, a naturopathic physician specializing in urology, contributes to the health of the bladder glycosaminoglycan layer, nitric oxide production, healthy stress response, and normal mast cell production that helps promote a healthy functioning bladder and normal urine frequency. Learn more here!

2. 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!

3. 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!

4. Focus on Fitness - New Dawn Pilates For Pelvic Pain

New Dawn Pilates For Pelvic PainCreated for patients struggling with pelvic pain disorders, this DVD is ideal for individuals who are seeking new, gentle exercises that will not flare their symptoms. Because many patients can't perform long, intense workouts, this DVD has shorter segments which allows patients to personalize their workout according to their capabilities.

In addition to a 47 minute complete workout, it also offers targeted workouts for warming up, arms, abs, back and legs. Thus you can create your own workout based upon your unique needs that can last from 7 to 45 minutes!!! The bonus workout, the Rough Day Revitalizer, is a great way to relax after a long, difficult day.

This DVD was developed by Jenny Lelwica Buttacio, a certified pilates instructor and registered occupational therapist was diagnosed with IC in December 2005.

Learn more here!

5. Your Page Yoga: Relieving Pelvic Pain

Yoga at Home adapted for men and women with pelvic pain by Dustienne Miller, a licensed physical therapist at Beyond Basics Physical Therapy in New York City. This video weaves together breath work, meditation, body awareness, and gentle yoga postures. This stress relieving program can be practiced in as little as twenty minutes, making it possible to fit into daily life. (DVD)

Learn more here!

6. OTC Neutraceuticals (Step One IC Interventions)

Prelief

CystoProtek

Cysta Renew

CystaQ

Desert Harvest Aloe