Interstitial Cystitis Network Newsletter

May 2013 - ICN E-Newsletter

Sponsored by: Prelief - CystaQ - BladderQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin

Trouble reading this email?? Read it online here!

Happy Mother's Day

The happiest of Mother's Days to those remarkable ladies who held our hands when we needed someone to lean on, who drove us to the doctors office as we sought answers and tried new treatments, who made IC friendly meals that we could eat and enjoy without worry and who have been blessings in our daily lives. We love you and we thank you for all that you have done for us!

New Spring 2013 IC Optimist Released!

We're delighted to announce that the Spring 2013 IC Optimist is currently in the mail to our subscribers throughout the world. The IC Optimist provides financial support to the ICN, thus allowing us to develop this free e-newsletter and the ICN Support center where more than 200,000 patients per month participate! If you've found the ICN helpful, please support us by becoming an ICN subscriber and/or shopping in the ICN Mail Order Center!

 

Contents:

(1) No Longer Silent: Men with IC Share Their Stories

(2) Meet the IC Expert: Dr. Greg Davis

(3) The Latest IC Research

(4) Related Conditions: Irritable Bowel Syndrome

(5) Self-Help Tip: Got Urethral Pain?

(6) My Bladder Divorce

(7) Fresh Tastes by Bev: It's Salad Season

 

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AUA 2013 Highlights

The annual American Urological Association (AUA) conference is the largest in the world not only for urologists but also for the IC community. The latest research is presented in a variety of podium and poster sessions and, most importantly, several classes were held to teach the next generation of urologists about current treatment strategies for IC. Several "themes" came out of the sessions:

(1) Urologists are now STRONGLY encouraged to assess the pelvic floor in depth. The pelvic floor is an often unrecognized source/trigger for bladder and pelvic pain. Physical therapist Rhonda Kotarinos and Dr. Jeanine Potts provided detailed instruction on the pelvic floor musculature and how it should be assessed and treated.

(2) The first results from the large, federally funded, MAPP study were presented, revealing that patients who received and had access to patient support (family, friends and support groups) had far better outcomes than those who did not. Both the ICN and the ICA were recommended for our patient advocacy services.

(3) - Urologists were encouraged to create a team approach that includes:

#1 - a physical therapist to work with patients with pelvic floor issues
#2 - a registered dietitian to help patients with diet and nutrition
#3 - a rheumatologist to help with other related conditions
#4 - a pain specialist to help plan an appropriate pain management strategy
#5 - an obgyn to help women with IC who may also be struggling with endometriosis
#6 - a psychologist to help patients with anxiety, catastrophizing and to improve our overall mental health.

(4) Urologists were encouraged to use a "less is more" approach. In otherwords, to work in a deliberate, step wise process that utilizes the AUA Guidelines for the Diagnosis and Treatment of IC.

(5) Drs. Robert Evans and Kristene Whitmore discussed the use of alternative strategies and supplements, particularly for those patients who are unable to traditional therapies or were not covered by health/drug insurance. Prelief, CystoProtek, CystaQ, and Desert Harvest Aloe were mentioned several times as options worth exploring.

AUA Tidbits & Observations

  • There are approximately 10,000 urologists and roughly 8 million women. This means that each urologist should be treating 800 IC patients, according to Robert Evans MD. He offered this statistic to encourage urologists to take on their fair share of patients.
  • Dr. Robert Evans discussed three principles of therapy: #1 - treat epithelial dysfunction (i.e. with Elmiron, instillations, etc.), #2 - stabilize mast cell activity using antihistamines, #3 - downregulate nerves & nerve sensitization using tricyclics.
  • Elmiron is still considered an essential therapy for IC due to it's ability to coat the bladder wall. According to Dr. Evans, it can take 3 to 6 months to show effectiveness for patients with mild IC. It can take 6 to 12 months for patients who have moderate to severe IC. Diarrhea, a well known side effect, is often dose dependent. If this is experienced, Dr. Evans suggested reducing the dose to see if this improved symptoms. For patients who cannot tolerate or afford Elmiron, he encouraged the use of the OTC supplements, including: CystoProtek, CystaQ or Desert Harvest Aloe!
  • Men with chronic prostatitis (CP/CPPS) have the same diet sensitivities as women and men diagnosed with interstitial cystitis (IC/BPS).
  • Did you know that pelvic floor trigger points contain more inflammatory markers AND have a lower pH. Pelvic floor trigger points should be treated, sometimes through trigger point injections.
  • Curtis Nickel MD reported that though Canada does have universal health care, "Canada cannot give physical therapy to everyone who deserves it." He encouraged patients to also exercise, do yoga, use heat and even attend health classes at the YMCA."
  • Dr. Lowell Parsons passionately encouraged the urology community to focus more on the potential causes of IC rather than treating symptoms. He believes that the original cause of IC is a defect in the GAG layer in the bladder wall which causes potassium to leak through, depolarize neurons and cause tissue damage in the bladder wall. He said that urine should be equally balanced with cations and anions and when this is unbalanced, this is a sign of a problem. He reported that patients have 2x the amount of cations in our urine... and that this represents toxicity.
  • One international researcher presented a Botox study that concluded that Hunner's Ulcers did not generate pain, to the bafflement of the audience. Another researcher stood up and asked "Then why does pain go away when these ulcers are fulgurated." The first researcher could not explain that and admitted that his clinic does not treat ulcers with fulguration. (Fulguration involves heating the ulcer and is a well known treatment that resolves 95% of the pain in Hunner's ulcers patients.) This is an example of a study that clearly had some flaws that the other doctors simply weren't buying. Thank goodness!
  • We asked Rob Moldwin, Rob Evans and Kristene Whitmore to discuss treatment for Radiation Cystitis, Eosinophilic Cystitis and Ketamine Cystitis. Dr. Moldwin responded that the three conditions, though slightly different, are treated virtually identically. Eosinophilic cystitis, however, seems to respond well to higher doses of antihistamines. Another participant offered that in Japan, suplitast tosilate is being studied, and is apparently helping more EC patients as well.
  • PTNS, aka Post Tibial Nerve Stimulation, was discussed positively throughout the conference, particularly as a less invasive yet equally effective form of neuromodulation. It has been reported to improve that annoying sense of "urge."

You can read many more AUA Tidbits on our Facebook page or in the ICN Forum.

 

Dr. Robert Echenberg Featured in an Outstanding Webinar

Dr. Robert Echenberg, one of the nations leading experts on pelvic pain, was featured in an excellent webinar presented by the ICA. We think this is a must watch for anyone who is struggling with IC and pelvic pain. He explains why patients often suffer from not one, but two or more pelvic conditions. He offers a clear and concise explanation as to the potential causes and, most importantly, discusses how pelvic pain and IC should be treated! This is an outstanding web presentation that we think every patient should watch!

Attention support group leaders! This would make an excellent video presentation for your support groups!

Watch it here!

 

IC & Pelvic Pain Clinical Trials

Clinical trials are a vital part of the search for a cure for IC. Not only do they allow patients to participate in cutting edge research, but they also can help patients receive treatment who may not have access due to a lack of health insurance. There are 30 studies currently underway as listed at clinicaltrials.gov!

Taris Launches New LiRIS Clinical Trial

Very exciting news my friends! LiRIS® is a promising new therapy for IC, particularly for patients who have Hunner's ulcers/lesions. In their first study, conducted in 2011, sixteen women treated with the LiRIS device showed clinically meaningfully reductions in their IC symptoms but what was shocking was that 5 of 6 women with Hunner's Lesions showed a complete "resolution" of the ulcers after two weeks of treatment. Think about it. Hunner's lesions, considered the most severe form of IC, were healing in two weeks. Obviously, the IC research and patient communities became very excited. Last year, they launched their first Phase II study in the USA  which was suspended later in the year. After reviewing the data from that study, they found that the results were encouraging enough to launch a second Phase II this year.

Read the press release here! 


Recent, Topical IC Blogs

 

Upcoming Patient Conferences:

Next Month! ICA Philadelphia Conference

Calling IC patients located in the Philly area. The ICA is doing what looks to be a fabulous patient conference on June 29th. Excellent speakers including Amy Stein PT, Rob Moldwin MD, Daniel Carr MD, Chris Mullins (NIDDK), Barbara Shorter RD, and a section on "When Standard Treatments Fail" that should be quite interesting! Check it out. It appears to be free though you will need to pay for travel, etc.

Learn more!

 

Recipe of the Month

Simply Delicious - a new blog for acid sensitive patients

Last month, an innovative new diet & nutrition blog (Simply Delicious: Low Acid Eating Made Simple) was launched by Akpharma, makers of Prelief and the ICN. Twice a month, we'll be sending out e-mails that feature simple, easy tips that will help you and anyone struggling with acid sensitivity enjoy food again! Learn more about it here and find other recipes on the PRELIEF FACEBOOK page!

Recipe of the Month - Blueberry Breakfast Casserole

Blueberry Breakfast Casserole

Ingredients:
12 slices homemade-type white bread
16 oz. cream cheese, cubed
1 c. fresh blueberries
12 large eggs
1/3 c. maple syrup
2 c. milk

Sauce Ingredients
1 c. sugar
2 T. cornstarch
1 c. water
1 c. fresh blueberries
1 T. unsalted butter

Prepare the night before: Remove crusts from bread and cube bread into 1-inch pieces. Layer ingredients in a buttered 9 x 13-inch glass baking dish:

1. Half of the bread cubes (the bottom)
2. Cubed cream cheese
3. Blueberries
4. Other half of the bread cubes

In large bowl, whisk together eggs, syrup, and milk. Pour over bread/blueberry layers. Cover, and chill overnight.

In the morning: Preheat oven to 350°F. Cover casserole with foil and bake for 30 minutes or until puffy and golden brown.

For blueberry sauce: Stir sugar, cornstarch, and water in small saucepan. Cook mixture over medium heat for 5 minutes, stirring frequently. Mixture will thicken. Stir in blueberries and simmer the mixture, stirring frequently, about 10 minutes or until berries have “burst.” Add butter and stir the sauce until butter is melted. Serve casserole with sauce.

 

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 now collecting names to create a new database of care providers in Canada and the USA! If you have a doctor that has treated you compassionately, 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 our database

Click here for our doctor recommendation form!


New Resource - MultiRight Low Acid MultiVitamin

MultiRight Low Acid Multivitamin

Over the past twenty years, IC patients have often asked if there was a bladder friendly, low acid form of a multivitamin. Multivitamins have long been reported to trigger bladder irritation due primarily to the presence of high levels of Vitamin C (ascorbic acid). Many IC patients simply prefer to avoid using any multivitamins out of fear that it could exacerbate their symptoms.

We’re delighted to announce that Farr Laboratories LLC, makers of CystaQ and ProstaQ, has developed a new, lower acid, multivitamin supplement. Known as MultiRight™ Multivitamin Complex, it was released last month and hundreds of patients have tried it without a single report back to the ICN that it aggravated their IC symptoms. Yay!!!

Charley Kamen, CEO of Farr Laboratories LLC offered, “The ICN brought us this idea last year and we found the need for a supplement that was lower in acid compelling not only for patients with a sensitive bladder but also a sensitive stomach.” This formula reduces overall acid level several ways. Charley continued “We’re using vitamin C derived from calcium ascorbate rather than ascorbic acid. Calcium glycerophosphate, a well known acid reducer, is the source for both calcium and phosphorus. We’ve also used sodium bicarbonate as a filler. The end result is a vitamin that is lower in acid that still delivers essential vitamins and minerals.”

NOW AVAILABLE FOR PURCHASE through Amazon.com & the ICN Mail Order Center or by phoning 1-800-928-7496.

 

IC Resources From The ICN Mail Order Center

www.icnsales.com - (800)928-7496

Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!

Bring in the Spring with Bladder Friendly Tea and Cookies

Who says you can't go out and enjoy a cup of something with your friends. There ARE some bladder friendly teas that could work very well for your tender bladder, made especially yummy with some great new organic cookies that we've found. These are a special treat!

 

Davidson's Roasted Carob Dessert Teas

Alice's Stick Cookies are back and just as good, if not better!!!

 

Introducing Luvena

One product line getting rave reviews from patients is LUVENA  series of prebiotic feminine moisture products. These provide soothing relief for dry, tender tissues!

Luvena Vaginal Moisturizer

Luvena Feminine Wipes

Luvena Personal Lubricant

Best Sellers

 

Find these items and 400 more items in the ICN Mail Order Center Today - http://www.icnsales.com