2012 Guide to the IC Diet - A Special Issue of the IC Optimist
We are thrilled to announce that our 2012 Guide to the IC Diet is now available, an expanded issue of the IC Optimist dedicated entirely to the IC Diet and including our brand new food lists. Our ICN E-Subscribers and mail subscribers should have received them earlier this month. They are also available for purchase individually in the ICN Shop.
(1) Understanding the IC Diet - We review the basics including the nine food categories that are notorious for triggering flares. We explain the history, how and why's of the diet.
(2) The IC Food Lists: How to begin modifying your diet - We offer two key lists. The first, short list is based on the data of two large IC and diet research studies and offers foods that are "more bothersome" and "least bothersome." That is followed by our large 2012 IC Food List. A ten page alphabetized table of foods offering their bladder friendly, try and caution variations. This updated and expanded list replaces our 2009 IC/BPS food list.
(3) So What Can We Eat? - Jill Osborne shares offers meats, veggies, breads, dairy products and desserts that you can eat and enjoy, based on fifteen years experience, consultation with experts and the latest research.
(4) So What Can We Drink? - Finding IC friendly beverages is often the most challenging. In this article, Jill shares a four step plan that you can use based upon your bladder symptoms as you choose which beverages to drink, including some low acid coffees.
(5) Diet Struggles and Success Stories - IC writer Stacey Shannon shares several patient stories on how they've approached the diet, struggles they've had and successes they've found by modifying their diet.
(6) Elimination Diet Essentials - Bev Laumann, author of A Taste of the Good Life: A Cookbook for an IC Diet, offers a fabulous guide on how to do an elimination diet so that you can uncover those foods that you are uniquely sensitive to. This is a great strategy for patients who still can't figure out exactly what is bothering their bladders on a daily basis.
(7) A Dietitian's Story - Julie Beyer RD, author of the Confident Choices series of IC diet books, shares her story and how she has helped educate thousands of patients and professionals.
(8) Wine Beer & Spirits: Do They Trigger IC Flares - We've reprinted an article from 2010 to help patients find bladder friendly alcoholic beverages. Includes the results of a large survey and provides suggestions on beers, wines, alcohols, mixed drinks and mixers.
(9) The Healing Power of Food - Mia Eliot, author of the Happy Bladder Cookbook, reminds us that food shouldn't be feared rather it's a source of healing!
- Buy a print version at: https://www.icnsales.com/product.php?productid=505&cat=0&page=1
- Buy an instant download version at: https://www.icnsales.com/product.php?productid=504&cat=63&page=1
- Become an IC Optimist subscriber at: https://www.icnsales.com/icn_patient-subscriptions-angel-basic-email_print/
Pelvic Pain Retreat Has Just Five Spots Left
Just five spots left! The Women's Urology Center at Beaumont Hospital has just announced their second week long retreat for women struggling with pelvic pain, IC and/or pelvic floor dysfunction. In this very rare opportunity, patients will have the opportunity to work with some of the best physicians, nurse practitioners, physical therapists and psychologists in the country, led by Dr. Ken Peters MD, Chairman of Urology of the hospital and Medical Director of the WUC. Donna Carrico WHNP and Clinical Director of the Center offered "The first Retreat Week in November was such a success that we immediately began plans for this retreat. We are limiting the enrollment to 10 women, so that each one may receive the individualized, intensive care they deserve."
When: April 16-20, 2012
Where: Women's Urology Center, Beaumont Hospital - Royal Oak MI
Cost: $450 (additional clinical services will be billed to your insurance)
Registration Deadline: March 20, 2012 - space is limited! We suggest registering early to reserve a spot
Download the brochure at: http://www.ic-network.com/beaumontretreat-0412.pdf
New Yoga Program Designed For Pelvic Pain Patients
Looking for a yoga program that won't exacerbate your IC and/or pelvic pain symptoms? Your Pace Yoga: Relieving Pelvic Pain is a new, gentle yoga program (DVD) for men and women struggling with pelvic pain.
This innovative, new program was created by Dustienne Miller, a licensed physical therapist at Beyond Basics Physical Therapy in New York City. Dustienne is a certified yoga teacher, having earned her certification through the renowned Kripalu Center for Yoga and Health in Massachusetts. She danced professionally in New York City with the national tour of Fosse and has worked backstage at several Broadway productions as a physical therapist.
Dustienne passionately believes in the integration of physical therapy and yoga in a holistic model of care, helping individuals navigate through pelvic pain and incontinence to reach a healthy and pain-free life.
Will play on any DVD player!
Clinical Trials News & Updates
New OAB Research Study Studies Patient Experiences with Sacral Neuromodulation
Qessential Medical is a market research company specializing in medical technologies. We are interested in learning more about people's experiences with certain medical therapies. They are currently running a study regarding the use of medical devices for the treatment of overactive bladder (i.e. sacral neuromodulation). If you are using a medical device to manage your OAB, we would like to invite you to participate in a telephone interview.
The interview will take about 45 minutes to complete and can be done at a time convenient to you. The study is open only to USA residents. In appreciation for your time and opinions, you will receive $100. If you would like to participate, please call us at: 1-800-932-4249 (between 9:00 am and 5:00 PM EST Monday-Friday) If you prefer, you may also e-mail us at Taylor@QMMR.net
FDA Votes To Continue Tanezumab Clinical trials
In 2010, the IC world and the ICN patient forums were abuzz with a new clinical trial for pain called Tanezumab (Pfizer). In fact, several companies were in the process of developing these "anti-nerve growth factor" medications. Early results were promising and it was found to be helpful in reducing severe pain. However, a serious problem emerged when it was discovered that patients undergoing trials began to experience hip fractures. The FDA suspended all trials in summer 2010.
This past Monday, the FDA held a public committee session to review the data and, at the end of that meeting, the committee voted to allow the companies to continue their studies with the caution that they must try to determine which patients would benefit the most from the medication as well as those who should be excluded if they are predisposed to joint problems. One participant theorized that because nerve growth factors play an important part in the development of new blood vessels, that when the medication blocked NGF, it resulted in a weakening of the bone. Read more!
The Latest IC Research
If you have any doubt about the future of the IC movement, look no further than at the new, dynamic research that is produced each month on new therapies, diagnostic methods and, of course, the potential causes of IC. We've chosen to highlight studies and papers that we think are particularly interesting.
Recurrent UTI Predisposes to Bladder Sensitivity
Phil Hanno MD has written a compelling editorial in UroToday discussing the results of a study which found that women who have experienced recurring UTI's were found to have far greater bladder sensitivity (frequency, urgency, nocturia) than control patients without a history of UTI. The study authors "speculate that a neurogenic mechanism seems likely" perhaps that certain nerves undergo a change in their electrophysiology that results in the development of chronic symptoms of urinary frequency and urgency. Dr. Hanno wonders how many of these women will go on to develop IC and, like the authors of the study, suggest that recurring UTI patients be assessed.
Source: Evidence of bladder oversensitivity in the absence of an infection in premenopausal women with a history of recurrent urinary tract infections. UroToday. March 12, 2012
New Study Shows Promise for Analyzing IC/BPS
(Lexington, KY) A pilot study led by University of Kentucky researchers shows that the gene expression analysis of urine sediment could provide a noninvasive way to analyze interstitial cystitis in some patients. Interstitial cystitis, also known as bladder pain syndrome, is a debilitating disease of the urinary bladder. The disease can occur with or without bladder ulcers (called Hunner lesions). Interstitial cystitis is a difficult disease to study because animal models are limited, and human patients cannot ethically be subjected to invasive research procedures.
The researchers' goal was to develop a noninvasive method to analyze the bladder epithelium as objectively and directly as possible. During the study, the researchers used micro array technology to analyze cells shed into the urine as an alternative to bladder biopsies, which require anesthesia and have a small risk of bladder injury.
The results showed that urine cells from patients with Hunner lesions had a distinct gene signature for inflammation, similar to the results from a prior micro array study of bladder biopsies. The study was the first to show this inflammation objectively, but without biopsy, in Hunner lesion patients.
If these preliminary results are validated in future research, they may lead to a noninvasive biomarker for Hunner lesion-interstitial cystitis/bladder pain syndrome, says researcher Eric Blalock, associate professor in the Department of Molecular and Biomedical Pharmacology at the UK College of Medicine.
"A crucial next step will be to determine the stability of this set of biomarkers across larger samples of the population," Blalock said. "And to also see if similar procedures could be used for early diagnosis and intervention in the disease process."
For interstitial cystitis patients without Hunner lesions, the gene signatures were similar to healthy controls.
"This is important in view of the ongoing debate whether the two types of interstitial cystitis really are different disorders," said UK urologist Deborah Erickson. "Prior studies showed the two patient types did have different findings on bladder biopsies. Our findings support the difference, but without the need for biopsy."
This study also earned a rare and important distinction for this research team. Their article was selected for post-publication in the Faculty of 1000, a global peer review group that identifies and evaluates the most important articles in biology and medical research publications, placing the researchers work in the top 2% of published articles in biology and medicine. We offer our hearty congratulations and gratitude!
Source: Univ. of KY Press Release
Other Interesting Publications
- Diagnosis of interstitial cystitis/bladder pain syndrome in women with chronic pelvic pain: a prospective observational study.
- Transient receptor potential A1 receptor-mediated neural cross-talk and afferent sensitization induced by oxidative stress: Implication for the pathogenesis of interstitial cystitis/bladder pain syndrome.
- Relationships among clinical symptoms, bladder condition, and subjective perceptions in patients with interstitial cystitis/painful bladder syndrome
- Interstitial cystitis: diagnosis and management.
- Antiproliferative factor signaling and interstitial cystitis/painful bladder syndrome.
- Co-morbid pain conditions and feelings of invalidation and isolation among women with vulvodynia.
Consumer Alerts - Anticholinergics Often Prescribed For IC & OAB May Cause Confusion, Memory Loss & a Decline in Cognitive Function
Some medications commonly prescribed for IC patients (i.e. antidepressants, antihistamines, antispasmodics, muscle relaxants) have an anticholinergic effect that may adversely effect brain function, particularly when used by the elderly or when combined and used for long periods of time.
In "Cocktail of Popular Drugs May Cloud Brain," New York Times writer Tara Parker-Pope offers a candid view of this somewhat worrisome research. In a study that followed 13,000 British men and women, researchers found that patients who were taking two or more of these medications had a significant decline in cognitive function but they also found that heavy users had a 68% increase in death. A study of 4000 adults in Indianapolis found that patients who had been using three or more anticholinergic drugs for 90 days or longer were nearly three times as likely to receive a diagnosis of cognitive impairment.
The challenge, of course, is that many medications on the list are commonly prescribed for patients with IC and OAB to help reduce bladder symptoms, muscle spasms and pain. What this research shows is that the elderly are particularly vulnerable and that using multiple medications of this type for long periods of time could pose a risk.
The Indiana Univ. Center for Aging Research has developed two new drug "Anticholinergic Burden Lists" that can help you evaluate the medications that you are taking to determine if you are using any of these medications and/or are at risk. We encourage you to read the article in the New York Times and review the lists and the, if you feel that you are at risk, make an appointment to TALK WITH YOUR DOCTOR. Please do NOT stop your medications without speaking with your physician first. Bring the article, lists and a complete list of your medications with you so that your physician can review your medication use thoroughly. Questions to ask include:
- Does he or she feel that you are taking too many medications of this type?
- Are there alternative medications that can be used that are not anticholinergic in nature.
- Should your medication dosage be adjusted
Self-Help Tip of the Month - Beware Promises of "Breakthrough Discoveries" and "Cures"
(By Jill Osborne, MA ) It happened again. Earlier this week we had yet another phone call from a patient who had gone onto the internet, saw an ad claiming to share the "cure" for IC if she bought a book. She fell for it, paid good money, and then followed the books suggestions for a year. The problem? Instead of getting better, she got worse. I had the unfortunate task of telling her that she had fallen for what I believe to be a scam.
If we had the "cure" for IC, it would be featured on the front page of every credible website on IC. We don't have a "cure" as yet because there are still many unanswered questions about why and how IC occurs. Why, for example, do some patients have Hunner's Ulcers while others have no visible bladder damage. (See Univ. of KY Study discussed below) Why do some patients have pelvic floor dysfunction while others have completely normal pelvic floor muscles. A critical question is why do some IC patients also have IBS and vulvodynia, while others don't have any related conditions. In some patients IC may be inherited.
Have no doubt, we are getting closer every day to understanding the mystery of IC. Brilliant researchers have dedicated their careers to understanding IC and their work is producing solid research and new treatment possibilities each and every day. A perfect example is the new LiRIS clinical trial currently under way.
Yet, numerous websites and/or individuals are promising to help you "cure" or "end" your IC. I urge you to be skeptical of these claims. Of all the web and YouTube scams we've seen over the past twenty years, this e-book is, in my opinion, the worst of the lot. When you look closer, the facts begin to unravel. The author, for example, has no standing in the IC/urology world. She hasn't contributed articles to journals. She hasn't presented her information at IC conferences. And, as far as we know, not a single IC clinician advocates her theory that IC is the result of salt intake.
When I investigated the author, I found the same book and "breakthrough discovery" claims repackaged on virtually identical websites for different medical conditions. The author claims that she can cure overactive bladder, constipation and restless leg syndrome as well. As one IC patient wrote, "Imagine if just 10 people a day bought those books at $30 a pop, that is double what most people earn in a year."
ICN user AsIShallBe wrote "I was a sucker when I was first diagnosed with IC and I fell for this online downloadable book. They say the secret is to delete salt and sodium from your diet. They say that that is the answer. Sure!" Let me offer that no correlation has been found between interstitial cystitis and salt intake in ANY credible research study. ANY study at all.
Another patient wrote "Yes I was almost going to spend the money for it but I didn't have the money so didn't. I know there is no "cure" but I guess I was sort of hoping. Makes me think about back in the cowboy days when they sold the "cure in the bottle" to sick people and all it was, was alcohol. When people are desperate they will believe anything and spend money for a chance at help and there are people out there who are willing to make money off of it. Really sad for both people I think."
Worse, though, are the patients who have been harmed by following suggestions offered. ICN member Wren wrote "I fell for that book and bought it. Twice. Lost it once. The second time, (a few months ago) I was trying so hard to follow it just wanting to believe it would make me better, I got so sick trying to deplete my sodium intake and it did nothing. I bought the natural products the book suggested and had irritating affects from them. Now I feel so naive for buying it. I'm definitely making a complaint."
Once again, I want to encourage anyone who purchased this book and feels as if they were scammed to file a complaint with Martha Coakley, Attorney General of the Commonwealth of Massachusetts. Her department will not take action unless they receive multiple complaints. Please help us get a proper investigation of these IC cure websites and "authors."
Chef Dan Norton Talks About Our New Food App
We'd like to thank Chef Dan Norton for doing a blog on our food App! He wrote "The Interstitial Cystitis Network has designed this iPhone and iPad application to add convenience to an otherwise inconvenient situation. Whether you are at the grocery store, a restaurant, or watching food television programs, the mobile ICN Food List helps you research ingredients instantly, allowing you to determine the possibility of flares. In addition, for the first time ever, wine, beer, and spirits are also included in the list. The ICN Food List is extremely affordable at a one-time purchase of .99 cents. WARNING! Dollar stores do not carry this product."
The Interstitial Cystitis Network Food List App is designed to help patients struggling with urinary discomfort choose foods that will soothe rather than irritate their bladders. Ideal for use when shopping or eating out, it contains a searchable database of more than 250 foods broken out into three categories: bladder friendly foods, foods worth trying cautiously and foods to avoid.
Price: Just 99 cents in the App Store
Platform: iPhone, iPad (Android version under construction)
New Articles & Blog Entries Worth Reading
Rice Pudding with Almonds and Cherry Sauce
Chef Dan Norton continues his IC friendly recipe subscription service and offers a variety of free recipes on his blog, My Food Styles! We think this Rice Pudding recipe makes a fabulous, IC friendly dessert perfect for late winter and early spring! Read it now!
Let The School Bells Ring
IC patient, author and dietitian Julie Beyer has written a fantastic article sharing her decision to return to school for a Masters Degree, offering excellent suggestions on how it can be managed even with interstitial cystitis. She emphasizes going slow, asking for accommodation for your IC (if necessary) and finding a program and schedule that works for you. Read it now!
Quinoa For Breakfast
Quinoa is a fabulous high protein grain that is growing in popularity across the USA and is quite popular with patients who have food sensitivities to typical grains. Quinoa pasta, for example, is a fabulous alternative to wheat based pasta. The new IC & Gluten Free Recipe blog has a wonderful hot quinoa cereal recipe that you might enjoy! Read it now!
Trouble Accessing the ICN Site? We had to block access to some servers.
Last December we experienced several serious hacking attempts to our server that originated from China. We have excellent server security and these attempts were not successful. However, to protect our users from future attempts we chose to block IP address blocks associated with Chinese, Philippine and Vietnam internet service providers. Unfortunately, some ICN users from Europe and the USA have accidentally been caught up in the blocks.
We would like you to test your connection to determine if you've been blocked so that we can restore your access immediately.
How do you know if you've been blocked?
When you try to access our websites (http://www.ic-network.com), you would get a constant "loading" message but the site will never display. You may also get a "this server is unaccessible" message.
How can you get unblocked?
We need to add your IP address to the "white list" on our server to restore your access.
How to determine your IP address?
Please visit the following website (http://whatismyipaddress.com/). When you load their front page, it will display your IP address.
Please e-mail your IP address to firstname.lastname@example.org and ask that you be added to our white list. We will then verify the address and restore your access.
Our apologies for the inconvenience. The blame lays entirely with a growing horde of hackers and spammers on the web. Grrrr!
Low Income Advocacy - We Need Your Old Books
Do you have any old copies of the IC Survival Guide, A Taste of the Good Life, Confident Choices, Heal Pelvic Pain or Ending Female Pain that you are no longer using? If so, we could certainly use them! Every year, the ICN gives away a dozens of books, at no charge, to patients who are low income and call our office requesting help. But, we're now out of stock and have none of these books to share! If you have any books that you would like to donate to our low income assistance program, please send them to:
PO Box 2159
Healdsburg, CA 95448
Attn: Books for low income assistance
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.
New IC Support Groups & Support Opportunities
~ Find A Support Groups
Can you imagine how great it would feel to walk into a room filled with others who understand exactly what you're going through?? Having IC is difficult at times and doing it alone is unnecessary. There are dozens of independent IC groups around the country who are waiting to help you! Don't suffer in silence at home, alone. If there is a group near you, call the group leader and introduce yourself! Click here to find a support group near you!
~ Join an Online IC Support Chat
ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders. Join us live from the comfort of your home. Please note! Chats are free for all. No log in name and password are required. Just type in a user name and go!
When: 1st & 3rd Monday of the Month, 5PM PST to 7PM PST
Where: ICN Chat Room
IC Resources From The ICN Mail Order Center
http://www.icnsales.com - (707)433-0413
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!
Simpatico Coffee was recently reviewed in a blind tasting by a world-renowned third party reviewer to be the best roaster of Low Acid Coffees by CoffeeReview.com!
The Happy Bladder Cookbook - Finally Available in Print Format
We're delighted to share, finally, a print version of Mia Eliot's Happy Bladder Cookbook! Written by IC patient Mia Eliot in 2010, the Happy Bladder Cookbook offers 75+ flavorful and creative recipes that are compliant with the 2009 IC/PBS Diet Food List. If you're looking new fresh flavors, tastes and ideas to liven up your diet, this is a lovely addition to your IC cookbooks.
At 24 years of age, Mia has had her share of health challenges, including a diagnosis of IC in 2008. While she was struggling with her new diagnosis and losing her job, she went back to her old passion, cooking and, as she recently said, "I rediscovered just how much I love to cook." This cookbook shares some of her favorite recipes adapted to the IC friendly diet and represents her desire to turn lemons into lemonade.. well.. not actually lemonade since it's very irritating. The fact is that she is extremely positive and encouraging.