Happy Holidays From The IC Network

This Week on the ICN! December 18, 2014

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Facing The Holidays With IC

Keep CalmEvery holiday season is an adventure in our families (and friends) physical and/or emotional health. My Dad is 92 and has a tetchy stomach and occasionally irregular heart. Mom is nearly deaf and can't walk very far. My siblings don't eat any red meat and one is gluten intolerant. We've also got a handful of diabetics in the room. Throw in some seasonal moodiness and, well, you get my drift. It's an adventure in the Osborne home.

We, as a family, have no choice but to adapt and respond to whatever physical and emotional issues are happening that year. It IS our "collective normal" and that, I argue, is what makes for a truly memorable holiday!

Take the year my visually impaired Grandma Betty decided to make soup for the family. It was my cousin who asked "What are these?" as she held up her spoon. Everyone took a closer look and, yup, they were sipping on weevils. Or the time I made lasagna and forgot to remove the paper on the back of the cheese slices. My brother who, as a teenager, decided to make an ugly cake so that no one would eat it and, yup, we ate it anyway. There can be a lifetime of fun memories in the small moments of the holiday season.

As you ponder the coming days and weeks, rest when you need to. Gently say "No" when you have to. Keep as calm as you can! And remember that every person in your life has, or will have, a health issue. Your IC doesn't set you apart from the ones you love. Rather, you have more compassion to give to anyone else who might be struggling with pain and/or discomfort.

Don't forget that if you need a shoulder to lean on, please come visit the ICN Support Forum!

 

Allergic to Christmas Trees? Got Multiple Sensitivities?

If you're allergic to Christmas trees and/or have a variety of other allergies/sensitivities, you'll find this new study fascinating. Doctors at Queen's University in Kingston, Ontario Canada observed that many of their patients with IC/BPS had an "inordinate number of allergies and sensitivities," and wondered "Could this be a subset of IC?"

In a research study released this month, they demonstrated that IC patients with Multiple Sensitivity Syndrome (MSS) are, indeed, different from patients who have few allergies. They compared 17 IC/BPS patients who have three or more sensitivities/allergies to antibiotics, other medications, environmental and foods with 34 patients who did not demonstrate sensitivity. The differences were fascinating.

Though patients in both groups struggled with similar IC and bladder symptoms, the patients in the hypersensitivity phenotype had more organs effected and struggled with more illnesses. They also had higher rates of IBS, fibromyalgia, chronic fatigue and depression.

These results come as no surprise to the ICN patient community. We have observed acute sensitivity in many of our members, particularly very sensitive skin, unpredictable food reactions, drug sensitivities, a powerful sense of smell, and even some visual sensitivity to patterns in carpet or wallpaper that force a patient to close their eyes.

"By treating only the bladder symptoms of patients with this multiple sensitivity phenotype, we will likely fail to help the patient."

These results not only confirm our suspicions that multiple sensitivities can be part of our medical condition, but also urge physicians to actively identify sensitivities and/or the presence of bowel disorders, fibromyalgia, pulmonary disease (i.e. asthma) and psychological coping. They state "By treating only the bladder symptoms of patients with this multiple sensitivity phenotype, we will likely fail to help the patient. These other conditions need to be addressed by the urologist, the family physician and in many cases by specific specialists working collaboratively to treat the "whole" patient."

They also note that by treating these other conditions, such as allergies, it may decrease the impact of other conditions. Treating allergies with antihistamines may improve bladder symptoms, just as the treatment of bladder pain may result in less stress and depression.

Source: Fuoco M, et al. Multiple sensitivity phenotype in interstitial cystitis/bladder pain syndrome. Can Urol Assoc J. 2014 Nov-Dec; 8(11-12): E758–E761. Full article available for free here!

 

Editorial - Is Interstitial Cystitis Caused by Anger?

Allright, I'm angry right now. Yes, ANGRY. Thoroughly and completely pissed. Why? Because, in 2014, an IC patient in the South of the USA was told that the reason that she had IC was because she was angry about her ex-boyfriend. Yes, he really, REALLY said that. This was after she had been diagnosed by another doctor, found to have a damaged bladder wall, Hunner's lesions and was in serious pain. His treatment suggestion? Get psychological therapy. Read the full story here!

 

Has the ICN Made A Difference In Your Life?

Every patient organization is seeking donations and assistance this holiday season. Times are tough. Almost all of the pharmaceutical companies that supported IC outreach in the past decade no longer provide any financial support as they focus more on building profit for share holders. The costs of medications have increased forcing many patients to choose between medicine and food. Many simply can't afford a membership! We certainly understand the financial struggles of life with IC because we're IC patients too.

But, if you do happen to have the ability to make an end of the year donation or gift, we hope that you'll think of the ICN as a possible recipient.

Here are five reasons why we think we are deserving of your financial support.

  1. We are the only patient support group that has an educational phone line and answers patient calls every weekday, all at no charge to our members. 1-800-928-7496
  2. We operate IC Awareness Month at a loss every year because it's so important to get the word out.
  3. We provide this free e-newsletter to more than 20,000 readers each month keeping patients informed of the latest news, research developments, clinical trials and self-help strategies.
  4. Despite very modest funding, we have been rated the TOP (most accurate, credible and reliable) patient website dedicated to IC in research studies done by Harvard Medical School (2011) and the University of London (2013).
  5. We employ IC and/or pelvic pain patients because we believe that patients do have the ability to work and contribute meaningfully to this cause.

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)

 

The Latest Research

New IC Treatments Using Liposomes to Deliver BotoxA To The Bladder

A very interesting Botox study crossed my desk this week. As you probably know, BotoxA has been used for the treatment of various bladder conditions for several years now. Though it's not approved specifically for the treatment of interstitial cystitis, it is a STEP FOUR treatment option in the AUA's IC/BPS Treatment Guidelines. The treatment requires the injection of BotoxA into the bladder wall, usually at 20 to 30 injection sites. The downside of BotoxA treatment is that it can silence the nerves which control urination thus some (but not all) patients may be required to self catheterize for weeks or months afterward until the nerves become active again.

Researchers in Taiwan delivered liposomes filled BotoxA into the bladder via a simple bladder instillation and found the therapy safe and effective at reducing symptoms of overactive bladder (i.e. symptoms of frequency and intensity of urgency). Best of all, this study apparently experienced very few episodes of urinary retention that have made Botox treatment so worrying and challenging for patients. Read the full article here!

 

Consumer Alerts

Acidophilus and IC - Should We Take It!

Acidiphilous Powder Taking a natural approach to the treatment of any condition, including interstitial cystitis, makes certain sense. And if you look at the American Urological Association Guidelines for the Treatment of IC, they embrace the use of Neutraceuticals in Step One of their treatment protocol along with other self-help strategies. But, we should not assume that "natural" products are always safe.

Earlier this Fall, an infant died after being given some ABC Dophilus powder produced by Solgar. It was apparently contaminated with the mold Rhizopus oryzae and the infant developed an invasive fungal disease. The FDA issued yet another warning about this supplement and supplements that contain live bacteria or yeast, urging caution in their use in immunocompromised patients.

Read more!

 

ICN Survey Center - Help Our Research TODAY!

If you do just one thing today for IC, participate in this IC research study!

 

Dr. Dean Tripp (Queen's University, Kingston ON Canada) is conducting one of the most intriguing studies that I've seen in years. In "How Pain and IC/BPS Symptoms Are Associated With Patient Quality of Life" he is trying to understand more about the pain of IC, how it affects our mood, our level of hope and so forth. He also asks quite a few interesting questions about how patients view their lives with IC.

You can take the survey once or help them study how pain impacts our lives over a two month period. In that case, you'll end up taking it after 4 weeks and 8 weeks too! The study is short. It takes just 15 minutes to complete and has the potential of contributing very important data!

PLEASE SHARE WITH YOUR FRIENDS! He's looking for 1,500 participants to make this survey meaningful! http://queensu.fluidsurveys.com/s/ICBPSQoL/

 

Simply Delicious: The IC Diet Project - Quick Peppermint Ice Cream

After indulging in the heavy, rich foods of the holidays, sometimes you just need something light and refreshing! This Quick Peppermint Ice Cream is easy to make, bladder friendly and a special treat!

 

Quick Peppermint Ice CreamIngredients:

  • 1 pint Haagen-Dazs vanilla ice cream
  • 2/3 cup of crushed peppermint candies or candy canes
  • 1/4 teaspoon peppermint extract

Instructions:

Crush peppermint candies by placing between clean kitchen towels (or paper towels) and hitting with a meat hammer, or other heavy object. (About 7 or 8 6-inch candy canes will make 2/3 cup crushed). Sprinkle the extract over the crushed candy. With a large spoon, quickly stir the crushed candy into the ice cream. Ice cream will begin to soften and turn pink, so work quickly. No need to have it completely blended. Return to freezer for an hour or two to re-set and let flavors blend. Serve in fancy bowls, placing an oatmeal or decorated sugar cookie in the ice cream.

The key to IC-safeness with this is to use ice cream you know your bladder tolerates, and peppermint candies and extract that contain no artificial sweeteners or stabilizers.

Pie variation: Have a chilled, baked 8-inch pie crust ready. Fill with peppermint ice cream (you'll need a quart). Return to freezer to harden for 3 or 4 hours. You can top it with decorated cookies, carob chips, or cake decors. Or just before serving, place a dollop of whipped cream on each slice.

By Bev Laumann - http://www.icdietproject.com

 

ICN Mail Order Center

www.icnsales.com - 800.928.7496 or 707.433.0413

Christmas Hours: Our phone lines will be closed from Christmas Even through New Years though we will still be accepting orders through our website and through our phone message service.

Secret Santa Sale - 15% off selected items!

Use "secretsanta" as your coupon code to get these sale items!

Bladder & Prostate Friendly Chair Cushions

ProSirona

Gourmet White Hot Chocolate

Introducing Releveum For Tender, Sensitive Skin, Vulvodynia

Releveum 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 Interventions)

Prelief

CystoProtek

Cysta Renew

CystaQ

Desert Harvest Aloe

Bladder Pain & Flare Comfort Sampler

What couldn't be a more perfect gift than products that can provide comfort during IC flares. We've assembled some of our best products that can and will help!

  • ICN Guide to Managing IC Flares
  • AZO Urinary Pain Relief Tablets
  • 9 BodiHeat Heating Pads
  • Tiger Balm Pain Relieving Pads
  • One perineal cold pack
  • Chamomile Herbal Tea

Learn more at: http://www.icnsales.com/bladder-pain-flare-comfort-sampler.html

Bladder friendly Candy Sampler

Sometimes you just need something sweet, right? What can a patient enjoy and not trigger an IC flare? A close cousin to chocolate, carob candy is FABULOUS! It's rich, flavorful and satisfying. Really? Really! We've assembled our favorite sweet treats in this lovely candy sampler, a perfect gift for an IC patient who needs (no, deserves) a treat!

  • Queen Bee English Toffee (5 count)
  • Queen Bee Honeymoons (8 oz.) -
  • Nune's Farms Almond Caramel Chews (6.5 oz.)
  • Missy J's Truffley Treats (1.38 oz.)!

Learn more at: http://www.icnsales.com/candy-sampler-for-ic/bps.html

Cookies & White Hot Chocolate

Here's a a fun selection of bladder friendly cookies, white hot chocolate and mouth watering carob truffles, perfect after a snow fight or if you just want to curl up with a book by the fire!

  • Ginny Bakes Gluten-Free Coconut Oatmeal Bliss (5.5 oz.)
  • Stephen's Gourmet Pumpkin Spice White Hot Chocolate (1 lb.) - M
  • Missy J's Coconut, Almond & Sea Salt Bar (1.38 oz.)
  • Missy J's Peanut Butter Crisp Bar (1.38 oz.)
  • Missy J's Almonds Gone Coconuts Bars (1.38 oz.)

Learn more at: http://www.icnsales.com/cookies-white-hot-chocolate-.html

 

More Holiday Gift Samplers