/, Interstitial Cystitis Network Blog, News/Interstitial Cystitis Network Newsletter – May 29, 2015

Interstitial Cystitis Network Newsletter – May 29, 2015

This is the monthly free e-newsletter from the IC Network sharing the latest news, research, feature articles, self-help tips and more! You can sign up to receive it here!

1. New Spring 2015 IC Optimist Released

The IC Optimist is the quarterly patient and provider magazine for members of the Interstitial Cystitis Network. Each quarterly issue contains practical, helpful and informative articles written by IC experts that will give you hope. From the latest research to interviews with the best clinicians in the world, you’ll find practical tips in every article that will help you better understand and/or manage your interstitial cystitis. Your purchase of an ICN Subscription or individual issue (e-book or print) underwrites our free IC support services.

In this issue:

  1. Editorial: Cyclosporine Offers Hope for Intractable IC
  2. Feature Story: Where’s The Yeast? When Pelvic Floor Dysfunction Mimics Yeast Infections
  3. The Latest Research: Treating IC and Pelvic Pain with Acupuncture
  4. Feature Story: Is Body Image Affecting Your Self-Esteem?
  5. Self-Help Tip: How Much Sugar Do You Eat Each Day
  6. SSA Offers New Ruling on Interstitial Cystitis
  7. Clinical Trial News
  8. The Latest Research: Hep-Lido-A Significantly Reduced Bladder Pain and Urgency
  9. Feature Article: Compounded Medication Coverage Can Be Challenging
  10. Patient Story: Barbara Flanigan – My Quest To Discover The Cause of IC
  11.  IC Diet: IC Breakfast Ideas

How You Can Purchase it!

2. Self-Help Tip – Do You Ask For Antibiotics Every Time You Have An IC flare?

Ten Reasons Why You Should Not Self Medicate With Antibiotics For an IC Flare

When the symptoms of interstitial cystitis and prostatitis virtually mimic that of a bladder infection, it’s only natural for patients and doctors to contemplate treating urinary symptoms with an antibiotic. Go ahead! Admit it! You’ve probably raided your medicine cabinet in the middle of the night to take an antibiotic that you’ve saved. You might have even ordered antibiotics off of the internet. A desperate, burning bladder or prostate calls for desperate measures, right? Wrong!

Read more here!

3. AUA 2015 Highlight

Chronic Pelvic Pain Syndrome Webcast

The American Urological Association annual meeting is often the highlight of the year for researchers and clinicians working with interstitial cystitis. This year, the classe, lectures and research focused to a great degree on pelvic pain syndrome. One highlight was Drs. J. Curtis Nickel, Dan Shoskes and Michel Pontari who presented the cases of two men struggling with pelvic pain. Their key point was that urologists should not assume that all men with pelvic pain have prostate infection nor should every case be treated with antibiotics. (The same can be said for women struggling with recurring bladder symptoms). Rather, they showed that if a physician assesses then treats ALL of the conditions contributing to pelvic pain (i.e. pelvic floor dysfunction, other neurological related conditions, etc. etc.) using the UPOINT Diagnostic System, 77% of patients have symptom improvement and, for some, a complete resolution of their symptoms. Read the full article and watch the video here!

AUA IC Guidelines Updated Webcast

Dr. Phil Hanno presented the updated AUA Guidelines for the treatment of interstitial cystitis. First announced last fall, these changes are fairly mnor. Manual physical therapy to reduce trigger points was added to Step Two treatment options. Botox was reclassified from a Step Five to a Step Four treatment based upon new research which showed that a lower dose reduced the risk of urinary retention. Read the article and watch the video here.

AUA Research Studies

4. Hot Conversations in the ICN Support Forum – What patients are talking about!

Causes & Solutions For the IC Belly

New ICN member Cindog writes from England. She is 23 years old and has had symptoms for eigh months, particularly severe belly bloating. She’s looking for other patients who have struggled with bloating! Please give her some encouragement here!

Newly diagnosed wth Lyme

If you have IC and have also been diagnosed with lyme disease, we have a new member who can really use your advice and encouragement. She’s just been diagnosed with Lyme is now considering her treatment options but is not sure what she should do next! She’s looking for feedback! Read more here!

Private Disability Insurance

Have you applied for private disability insurance through your employer. ICN member scubascott asks for feedback on the process. Help her here!

MIcroscopic Blood In Urine

Here’s a great question. How often do you have microscopic blood in your urine?? Always?? Just during flares?? Or only during bladder infections. ICN Dottie Marie is asking! Read more and participate in the discussion here!

Suggestions for pain with intimacy

We have an ICN member who was in remission for 9 years but is now in a mild flare. The challenge is that her partner is returning shortly and she’s looking for tips to prevent discomfort with sex. Please share tps and words of wisdom with her here!

IC patient feels like a failure. Let’s tell her that’s not true

A brand new ICN member has made her first post today and it’s abit heartbreaking. She says that she feels like a failure because she’s struggling to find a medication she can tolerate and to get some relief for a tight pelvic floor. She could really use some kind words right now from others who are doing better! Help her out here!

5. Are you active duty or a veteran with IC?

 

IC/BPS is found in many of our service members, veterans, and their beneficiaries. A deployment health report with a surveillance period from 2000 to 2009 identified IC/BPS annual incidence rates for the active duty populations of 80.4 and 4.3 per 100,000 patient-years among females and males respectively. This data is, I believe, a low estimate given the now common perception that men with chronic prostatitis are likely misdiagnosed IC patients instead. Interestingly, the incidence of IC in military personnel has been increasing over time though we do not understand why. A second study showed IC/BPS to be a common primary diagnoses of Veterans Health Administration users, listed at a rate of 1.4% of the total population. (Sohn et al., 2006).

If you need assistance, please email (jill@ic-network.com) or call us directly at: 1-800-928-7496!

6. Newly Diagnosed Coaching

Designed for newly diagnosed patients, the ICN offers 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!

7. Interesting Blogs, Articles & Videos

8. 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 

9. Recipe of the Month (Submitted by ICN Member cair)

Rice Pudding Made With 1% Milk. It’s fabulous!

Ingredients

1 cup long-grain white rice ( I used organic)
6 cups of 1% milk ( I used organic)
1 cup sugar
3 large eggs ( I used organic… free range…etc)
1 tsp. pure vanilla extract ( I make my own)

Instructions

1.In a large saucepan, combine rice and 5 cups of milk; bring to a boil. Reduce heat to medium; simmer, stirring occasionally, until the rice is tender.

2. Meanwhile, in a medium bowl, whisk together sugar, eggs, vanilla, and the remaining cup of milk. slowly pour egg mixture into rice mixture; cook over medium-low, stirring constantly, until pudding coats the back of a spoon… about 5 minutes.

3. Remove from heat. Pour pudding into a bowl or casserole dish; let cool to room temperature.

4. Cover and refrigerate at least 1 hour… (or up to 3 days). We actually like it warm!

10. New IC Cookbook Released

IC Chef CookbookWe are proud to announce that our latest publication, the IC Chef Cookbook, is now available. The book is appropriate for patients struggling with bladder and prostate disorders as well as acid sensitivity. It features more than 260 recipes submitted by IC patients over the past ten years to our on-line cookbook.

Julie Beyer RD, author of the Confident Choices: A Cookbook for IC and OAB, contributed the foreword to the book. She wrote “For the past twenty years, Jill Osborne and the thousands of members of the Interstitial Cystitis Network Forum have shared their journeys with interstitial cystitis, including the recipes you find in this book. This cookbook is a celebration of that wisdom and, more, importantly the empowerment that patients experience when collaborating with each other.

If you think there are no hot beverages that you can enjoy, you’ll be intrigued by the more than 20 recipes for hot drinks included in the cookbook and, with the warm season approaching, you’ll also find recipes for frozen shakes and creamy drinks, sweet teas, smoothies and veggie drinks. If you’re sick of oatmeal for breakfast, you’ll find some fabulous new recipes perfect for a family brunch. From burgers to pizza, pasta to vegetarian ideas, there are plenty of options that should help you enjoy food again. (See Table of Contents and Recipe List Here).

How to Buy It

11. What’s New In the ICN Shop! www.icnsales.com – 800.928.7496 or 707.433.0413

Purchases in the ICN Shop underwrite the ICN’s Patient Support Forum where more than 40,000 patients gather to ask questions, break their isolation and share their stories with IC!

Desert Harvest Aloe

Desert Harvest Aloe is an incredibly responsive and dedicated supplement company that has worked with bladder health for years. Many turn to Desert Harvest Aloe after they find that they can’t tolerate more complex supplements. Known for its soothing effect, some patients find it to be very soothing. But DH also offers some clever variations that may work well!

Calcium & Vitamin D with Aloe

Buffered Vitamin C With Aloe

Quercetin With Aloe

B Complex Without B6 with Aloe

Very Private Back In Stock


Very Private Intimate Moisture
Eliminates vaginal dryness instantly, heightens & prolongs the pleasure of sexual activity. FDA & OB/gyn.net approved. Dermatologist tested & approved.

Very Private Body Wash
Cleans gently, conditions skin superbly. Has anti-bacterial & fungal protection, pH balanced, hypo-allergenic, non drying. Dermatologist tested & approved.

TravelJohns

Patients who struggle with driving in a car, or who are concerned about finding a restroom quickly, will find the TravelJohn an ideal resource! Travel John Disposable Relief Bags are the most sanitary, effective and convenient portable urinal on the market today. Employing a super-absorbent polymer that instantly gels and deodorizes liquids within seconds, the #1TJ is odor-free, spill-proof and fits comfortably in a purse, glove compartment and car.

Don’t let IC isolate you at home. This is a great option and will make any car trip much more comfortable. Comes in plastic packs of three! Learn more or order here!

MultiRight Low Acid MultiVitamin

Now used by thousands of patients successful, MultiRight is the go to multivitamin for patients who are sensitive to the acid found in traditional brand names. What sets this supplement apart are the ingredients. The most acidic and problematic ingredient for IC’ers, vitamin C, is sourced from calcium ascorbate rather than the more acidic, citrus derived ascorbic acid. The calcium and phosphorus is partially sourced from calcium glycerophosphate, a product also well known to reduce acid levels in food. Lastly, the filler is simple baking soda, again, a well known acid reducer. The end result is a vitamin that will be more tolerable for patients who struggle with acid sensitivity! Learn more!

OTC Neutraceuticals (Step One IC Interventions)

Essential Reading Materials

By |2017-01-31T10:25:27+00:00June 2nd, 2015|ICN Newsletters, Interstitial Cystitis Network Blog, News|Comments Off on Interstitial Cystitis Network Newsletter – May 29, 2015

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.