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ICN Newsletter – July 31, 2015


Sponsored by: Imprimis PharmaBeaumont UrologyCystaQ – Desert Harvest AloeMultiRight Low Acid MultivitaminPainShieldMD

Feature Stories

Have You Suffered From Discrimination on the Job?

ICNEzinediscrimination

Twenty five years ago this month, the American’s With Disabilities Act (ADA) was passed to stem the tide of layoffs and overt discrimination that occurred (and sadly still occurs) in workplaces across America. Earlier this month, I blogged about IC hero Bard Alan Finlan who spent years struggling with Verizon over his request for reasonable accommodation at his job, including asking for restroom access and a transfer to an office nearer his home. We became IC friends because we shared a common history

I, too, was involved with a five year long struggle for my rights as a disabled employee. I was working for a non-profit organization that decided to terminate only employees on disability leave. In my case, this happened while I was having all of the diagnostic workups for IC. My supervisor later revealed, in deposition, that she never bothered to read the articles on IC provided by my physician. She never believed that I was ill. What could be more direct harassment than an employer saying “You don’t look sick. You must come from weak stock”… a veiled reference to my parents and heritage? I was stunned speechless.

Both Alan and my stories pale in comparison to what IC patient Sue R. went through. In a devastating phone call, she shared that she had worked for a Japanese auto manufacturer in the midwest. She endured appalling discrimination when her male supervisor demanded that she demonstrate how she self-catheterized to a room of other male managers. Really? Really!

Read the full story here!


Why You Shouldn’t Load up on NSAID’s for IC, Bladder & Pelvic Pain

Why You Shouldn't Load Up on NSAID's For IC, Bladder and Pelvic Pain

When you struggle with IC and/or chronic pain and don’t have access to traditional pain relievers, using an OTC pain relief pill may feel like your only option. Right? I, like most patients, turned to Advil and Tylenol to help reduce my bladder pain when I was first diagnosed. Seriously, IC can hurt terribly and if it’s the middle of the night, it’s fairly natural to turn to that easy bottle sitting on the bathroom shelf. But, here’s the problem. These OTC pain products have some risks, especially when used over the long term.

Read the article and learn more about your options here!


Prelief Changes Hands – A Fond Farewell To Alan Kligerman and AkPharma

The popular OTC supplement Prelief has helped thousands of patients enjoy foods that could be irritating to their IC. AkPharma, the company that developed Prelief more than 25 years ago, has sold the supplement to a new company DSE Healthcare Solutions, LLC.

Alan Kligerman, CEO of AkPharma, is an unsung IC hero! An accomplished researcher (he also invented Lactaid and Beano), Alan has also showed tremendous compassion and caring for patients struggling with interstitial cystitis. He was the FIRST (and also the longest) sponsor of our IC support group and website more than two decades, helped fund patient events across the USA. He also underwrote the IC Network’s IC Food List iphone app and the IC Diet Project.

For the past decade, Alan has also been working in a new direction by studying the effect of calcium glycerophosphate on the healing of wounds. That research has been promising!

Thank you Alan for supporting IC patients for more than two generation!! We are so grateful for all that you’ve done to support IC. We wish you a very happy and well deserved retirement!


The IC Diet Project

With the sale of Prelief to a new company, DSE Healthcare Solutions LLC, we are thrilled to announce that the IC Diet Project – Simply Delicious Low Acid Eating Made Simple will continue under the new company. Written by IC authors Julie Beyer RD, Bev Laumann and Jill Osborne, we’ll be offering new, seasonal recipes every month through the rest of the year to help patients with a sensitive bladder, stomach and/or bowel enjoy eating again.

July 2015 – Zucchini: How Do I Love You! Ten Fun Ways To Enjoy it!

The IC Diet Project - Ten Ways To Enjoy Summer Zucchini(By Julie Beyer RD) You know it is mid-summer when neighbors and co-workers start to give away baskets of zucchini from their heavily fruited vines to everyone they meet. You don’t need to blink; you read that little bit of trivia correctly. Zucchini develops after the plant goes through its flowering phase and is botanically a fruit.

Nutritionally and in the culinary world, however, zucchini more closely resembles a vegetable. This versatile squash is served mostly in savory dishes and packs a high nutritional punch for only 34 calories in a 200 gram serving (the equivalent of one medium zucchini). Zucchini is also a fantastic, bladder- friendly source of vitamin C, potassium, and fiber; it even supplies a small amount of protein. These qualities are also valuable for those of us who are watching our weight!

Zucchini plants are easy to grow in home gardens, and many people cultivate them successfully in planters (just string up the vines with secure twine or wire as they grow!). Plants produce in as little as 35 days, making zucchini a terrific mini-agriculture lesson for children and adults alike―the exciting changes from seedling to flowering vine to edible food can be observed day-to-day! Properly tended, one plant can supply three to nine pounds of food over a two to three month period of time. No wonder your neighbors and co-workers are so generous this time of year!

It is a good thing then, that there are literally hundreds of ways to use this inexpensive and prolific food! Here are ten ideas to jump start your imagination:

  1. For a healthy snack, cut a small to medium zucchini into strips and serve with your favorite vegetable dip. (Try the Buttermilk Basil Vegetable Dip below!)
  2. For a fun brunch or breakfast idea, zucchini fritters are fresh, savory and unique enough to create special family memories. Combine one beaten egg with a cup of grated zucchini, a dusting of flour and parmesan cheese, some fresh herbs (basil, parsley, etc.) and your choice of grated cheese. Cook with olive oil or butter until lightly browned on both sides and serve hot!
  3. For a quick appetizer, zucchini bruschetta will please everyone. Top thin slices of sourdough bread with a slice of mozzarella cheese, a couple of thin, slices of zucchini, a dash of fresh rosemary and lemon zest. Broil till cheese is melted!
  4. For a light, refreshing salad, peel zucchini into long, thin slices. Toss with lemon juice (or lemon peel if you’re really acid sensitive), a TBSP of olive oil, dash of salt and a handful of fresh, chopped basil.
  5. For kale lovers, try serving fresh kale with thinly sliced zucchini, dash of olive oil, seasoned to taste with salt. Top with your favorite toasted nuts.
  6. For a fabulous, kid friendly side dish, slice a medium zucchini lengthwise into strips and place on a cookie sheet lined with parchment paper. Drizzle olive oil over the slices. Season with Italian seasonings, salt, pepper (if tolerated), and top with a sprinkle of Parmesan cheese. Bake 10 to 15 minutes until cheese is bubbly and golden brown.
  7. If you love a good stir-fry, simply toss zucchini slices with red and yellow bell peppers, mushrooms, broccoli, and onions into a wok with olive oil. Season to taste with soy sauce and serve with steaming hot rice.
  8. For a light pasta, add sautéed chopped zucchini and other vegetables (shredded carrots, bell peppers, broccoli, onion, and spinach) to an Alfredo sauce, then toss with your choice of noodles (quinoa, corn, wheat or rice) and cheese (mozzarella, ricotta, and Parmesan) for a quick and easy pasta primavera.
  9. Need to cut your carbs yet want some comfort food? Just use lengthwise slices of zucchini in place of pasta for a fabulous lasagna. Using Prelief before the meal can help reduce the acid of the tomato sauce
  10. For a healthy dessert, you can’t go wrong with zucchini bread or muffins. This is a great way to use the large and/or leftover fruit. Start with the basic Zucchini Bread/Muffin below and then adapt for your own tastes! Try playing with yellow vs. green zucchini for different colors and flavors. Grated zucchini also blends well with carrots and/or apples too!

So, there you have it! Zucchini is an inexpensive, easy, and fun to grow vegetable that is really a fruit―don’t forget to wow your friends with that fact―that is low in calories but high in nutrition and fiber, and that you can use raw or cooked in countless dishes from baked goods to lasagna. What’s not to love?

IC Diet Project - Zucchini Muffins IC Diet Project - Buttermilk Basil Dip

ICN Survey Center – Does An HSV Outbreak Trigger An IC Flare?

An ICN member recently reported that every time she has as genital herpes outbreak (Herpes Simplex 2), her IC flares. We’re curious? Does anyone else experience this? This survey is entirely anonymous and we will collect no identifying information (i.e. name). It’s a quick exploration into a potential cause of IC flares and what symptoms it might provoke.

Take the survey now!


Clinical Trial News

LiRIS Clinical Trials Resume

Another LiRIS clinical trial, this one studying its effect at reducing the symptoms of IC, has been launched on Annapolis MD, Royal Oak MI & Kitchener Ontario Canada. Learn more at: https://www.clinicaltrials.gov/ct2/show/study/NCT02411110

The LiRIS study to determine if it’s safety and efficacy of LiRIS in the treatment of Hunner’s lesions is being conducted in Annapolis MD and Kitchener, Ontario.. For additional information, please visit: https://www.clinicaltrials.gov/ct2/show/NCT02395042

Men With Bladder or Prostate Pain Sought For Study

Researchers at Northwestern University are seeking men with urologic pain to participate in a study evaluating the treatment efficacy of D-cycloserine (DCS). Men must be 18 years or older, meet the diagnostic criteria for IC or CP, have had pain for a minimum of three months and must be willing to abstain from drinking alcohol during the course of the study. For additional information, please visit: https://www.clinicaltrials.gov/ct2/show/NCT02385266


Atara Schimmel Angel ProjectAtara Schimmel’s Stunning Angel Project

If a picture speaks a thousand words, then the art of Atara Schimmel speaks volumes about pelvic pain and pudendal neuralgia. She’s just won the ADA poster contest sponsored by the city of Boston for her entry “We Will Be Heard,” one of her Project Angel series which is dedicated to raising awareness for pelvic pain.

Atara proves that art and artistic expression are powerful vehicles that patients can use to express their pain, frustration, emotions and thoughts in a healthy and often profound way. Better yet, that art can become a powerful tool to educate others about pelvic pain. I love her designs and her work!

Read her full story here!


Interesting Blogs, Articles & Videos


The Latest Research


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

ICN E-zine - Looking For An MD

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

IC Friendly BBQ SauceIC Friendly BBQ Sauce

  • 1 small can yams or sweet potatoes
  • 1 small can beets, drained
  • 1 can pears rinsed and drained
  • 1 cup pear juice
  • 3 roasted red peppers
  • 1/2 cup corn syrup
  • 1/2 cup brown sugar
  • 1 tsp Allspice (if you can tolerate)
  • 1 large clove garlic crushed
  • 1/4 cup chopped onions (if can tolerate otherwise use 1 tsp chives or 1 tsp onion powder)
  • 1/4 cup unsulfured molasses
  • Dash of liquid smoke (optional)

To make base for the nomato sauce, put yams, beets, pears, pear juice and red peppers in blender or food processor. Blend until smooth.

In medium pot mix together the red pepper mix and the rest of the ingredients. Simmer on low approx. 30 min. Stir often.

Read her full article here!


What’s New At 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!

Weather Alerts

During periods of extreme heat, over 100+ degrees, we will not ship out perishables (i.e. supplements & food perishables) until the weather cools to the low 90’s. We will also only ship perishables Monday through Wednesday to ensure that they are not exposed to heat in a shipping container or mail truck over the weekend. When possible we will use ice packs but please note that they only work for about 24 hours. If you’re ordering any perishables, please call our office if your temperature is expected to become high so that we can delay that shipment or arrange for shipping to an address where your mail is immediately brought indoors rather than allowed to sit in a hot postal box.

OTC Neutraceuticals (Step One IC Interventions)

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.

(See Table of Contents and Recipe List Here).

How to Buy It

Summer Essentials

Being prepared is an important part of making your summer easier and stress free.

Got Pelvic Floor Dysfunction or Pelvic Pain?

Gluten Free Quinoa Pasta

xIf regular wheat pasta makes you bloat up and/or be gassy, we think you’ll love this fabulous quinoa pasta made by American Harvest. Quinoa is growing in popularity around the world for its high protein level and lower carbs. It’s gluten free, gentle on the stomach and bowels AND has a wonderful, almost nutty flavor. Whether you’re making hot macaroni and cheese or a nice, cool pasta salad, this pasta is fabulous! Comes in three varieties: spaghetti, elbow macaroni and rotelli! Learn More

Essential Reading Materials

By |2017-01-31T10:10:07+00:00July 31st, 2015|ICN Newsletters, Interstitial Cystitis Network Blog, News|Comments Off on ICN Newsletter – July 31, 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.