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Fall 2016 IC Optimist Released

The Fall 2016 IC Optimist is now available for your viewing pleasure. Print subscribers should receive their printed copies next week. E-mail subscribers within the next 48 hours!!

In this issue:

(1) Editorial: Hunner’s Lesions Should Be Considered A Separate Disease

Our editorial suggests that Hunner’s lesions should be considered a separate and unique disease, a viewpoint shared by many of the international IC research community. Why? Because patients present with a very distinct profile: reduced bladder capacity and biopsy results showing profound inflammation NOT found in the 90% of patients who don’t have lesions. These patients deserve their own dedicated research efforts.

(2) New Chronic Pelvic Pain Guide Adds Clarity for IC

From receiving a correct diagnosis to finding compassionate treatment, chronic pelvic pain can be a difficult journey for patients to navigate. Is it the bladder? The prostate? The muscles or nerves? Thankfully, the International Continence Society has released new guidelines which outline the nine distinct domains that could play a role in your pelvic pain. For the IC patient who hasn’t responded well to treatment, this guide could shed light on other contributing factors. It’s a remarkable and much needed shift of perspective.

(3) Feature Story – Chronic Pain Patients Struggle To Find Care

When the US Centers for Disease Control issued new guidelines on the use of opiate medications, legitimate chronic pain patients found it much more difficult to obtain medication that they had been using safely and correctly for years. In our second feature story, Stacey Shannon shares the stories of several IC patients who have been caught up in the tide of opiate restrictions and medical care providers who are now reluctant to provide pain medication.

(4) Self-Help Tip: The Agony of Cranberry

There are some things that we can certainly do to reduce pain, particularly avoiding those foods that irritate the bladder wall (especially if you have Hunner’s lesions) and/or the nerves. In “The Agony of Cranberry,” we share the reasons why you should avoid all things cranberry.

(5) Research Update: Substantial Revision & Removal Rate For Interstim

If you were going to have surgery, wouldn’t you want to know the potential complication rate first? Three research studies conclude that patients undergoing Interstim® surgery have a significant rate of unexpected revision surgery and/or device removal. We share questions that you should ask your doctor if you are considering neuromodulation.

(6) Recurring Bladder Infections Linked To Menopause

Menopausal women are more prone to UTI because of thinning of the protective mucus in the bladder and vagina. If you fall into this group, you are certainly not alone and we have some tips that might help!

(7) The Latest Clinical Trials

We review two studies currently seeking patients. Please note that LiNKA study for Hunner’s lesion is ending soon.

(8) Industry News & Consumer Alerts

The price of Hep-Lido-A dropped dramatically in Fall 2016.

(9) The First IC Angel – Diane Manhatten Lopresti

We share the story of one of the first remarkable patients with IC – Diane Manhatten Lopresti. Her tragic passing in 2003 began the IC Angel movement. We share her story to inspire other patients to be an IC angel and help those who are struggling and/or in crisis.

(10) November is Bladder Health Awareness Month

The American Urology Association and several urology non-profits have launched a new awareness campaign that will spotlight various bladder diseases each week of the month. This is another great opportunity for IC awareness and exposure.

(12) IC Diet Project: White Chocolate Dreams

Chocoholics are well known to sneak a treat even at the risk of causing an IC flare. Yet, white chocolate contains none of the irritants, rarely irritates the bladder and makes for a rich and creamy treat. We share recipes for steamy white hot chocolate, cookies and some wonderful desserts for the holidays!

(13) Surviving The Holidays As A Newly Diagnosed Patient

Last but certainly not least, if you’re newly diagnosed with IC and facing your first holiday season, we share our best holiday coping tips! You can enjoy the holiday season with some great suggestions from patients just like you! Always remember, you are not alone!

(14) What’s New in the ICN Shop – One of the best books written for IC patients in a decade: The Interstitial Cystitis Solution, Tyler’s No Acid Coffee & more

Pages: 32

Order Your Copy of the IC Optimist Today

You can receive the IC Optimist Three Ways

  1. Purchase a PDF Copy (Instant Download)
  2. Purchase a print copy (sent by US Mail)
  3. Become an IC Subscriber ($25/year by email, $50/year by direct mail)

By | 2017-01-07T16:15:02+00:00 November 26th, 2016|Interstitial Cystitis Network Blog|Comments Off on Fall 2016 IC Optimist Released

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.