Cystitis Network Newsletter
Our newsletter sponsors, AKPharma (makers of Prelief), and Farr Laboratories (makers of CystaQ), underwrite this e-newsletter and help to make it available, at no cost, to IC patients and providers in more than 50 countries. They have been enthusiastic supporters of the IC movement, our web site, and understand the critical need for IC support. Best of all, their products are vital options for IC patients to explore. Prelief reduces the acid in foods, thus making it possible for IC (and IBS) patients to eat a more balanced diet. Research presented at the 2001 AUA conference demonstrates that CystaQ has been effective at reducing the symptoms of IC. It is a promising new treatment option!
Meet the IC Expert
Dr. Theoharis Theoharides, (Tufts University School of Medicine, Boston MA) launched the 2002 schedule for the ICN lecture series with a dynamic and riveting lecture. Dr. Theoharides has conducted groundbreaking research in interstitial cystitis and has been the recipient of several grants to study the effectiveness of hydroxyzine in treating IC, the effectiveness of Elmiron in reducing mast cell activity and the effectiveness of chondroitin and hyaluronic acid on bladder mast cells. He is currently participating in the NIDDK Interstitial Cystitis Study Group. Dr. Theoharides also discussed his research in the use of treating IC with quercetin, chondroitin sulfate and glucosamine (Algonot Plus). The transcript for this event is now available at the link above. This chat was also co-sponsored by Algonot Plus.
NEXT WEEK! May 21, 2002 Pat Criscito, President and CEO of Desert Harvest, will be discussing current and future research studies using aloe as a treatment for IC.† Desert Harvest discovered the connection between concentrated aloe vera and interstitial cystitis. Since 1993, they have worked with more than 1,700 IC patients.† New research studies offer promising results. Learn more by attending this event live or reading the transcript when it becomes available.
June 10, 2002 Dr. Stanley Zaslau. Co-Director of the Center of Sexual and Voiding Dysfunction (West Virginia University School of Medicine) will join the ICN to discuss the impact of IC on sexuality, a common and vital concern of patients and partners around the world. See Section B of this newsletter for an opportunity to participate in his on-line research study.
CHAT TIMES & LOCATION
All chats begin at 6PM PST, 9 EST
Where: ICN Chat Central - http://www.ic-network.com/chat/icnchat1.html
AOL Users - Please visit our community center for guidance in how to access our chat room. Older versions of AOL and/or WebTV may limit your ability to participate. (http://www.ic-network.com/chat/)
As always, we welcome questions submitted in advance by email. They should be mailed to: firstname.lastname@example.org.
OF INTERNATIONAL COLLABORATION
Fifteen years ago, the majority of IC activities occurred in North America, such as the establishment of the far-ranging NIDDK diagnostic criteria. For that foundational research and patient activism, we are grateful. However, since that time, a diverse and vibrant community of physicians and patient organizations has emerged beyond our borders, with different cultures, languages and needs. As of today, the ICN newsletter is distributed to patients and providers in 52 countries.
When the cure for
IC is found, it could be in a lab in England, Finland, Sweden, the Czech
Republic, Russia, Italy, France, Spain, India, South Africa, Japan, Brazil,
Australia, New Zealand, China, Canada and/or the USA. It could also come
from an international project. Therefore, it is vital that we nurture
discussion and collaboration among all who are interested in furthering
IC research and to extend our hands in respect and friendship across national
If you are in a country with no support groups or national association and would like to start one, please contact us. If you are a medical care provider who would like to bring IC resources, training or a conference to your region, we would be delighted to assist you in your efforts. Requests for information and support should be mailed to: email@example.com.
Jane Meijlink, founder of InterstitiŽle Cystitis PatiŽntenvereniging (Netherlands), provides an inside review of two key European events, the European Association of Urology Annual Meeting and last weeks Congress on IC and Related Conditions in Rome, Italy. The International IC Patient Network has been educating IC providers at the annual EAU event for several years now. This year, physicians from throughout Europe seemed desperate for more IC resources, particularly from Russia. Rome was the location for the first national conference for the Associazione Italiana Cistite Interstiziale and featured speakers from throughout the World. Read Janes reports at: http://www.interstitial-cystitis.org/news.html
Dr. Tomohoro Ueda shares his thoughts on the groundbreaking Symposium on IC of Japan, conducted as a satellite satellite symposium during the 90th Annual Meeting of The Japanese Urological Association on19th April, 2002. Diagnosis and treatments were just part of the presentation. Ms. Masako Katsurada, who organizes the patient organization of IC in Japan (Tomo-no-Ki), also spoke about her long-term suffering before she was finally diagnosed IC. This may have been the first time that an IC patient was allowed to speak in this traditional doctors forum.† Read the report today on the IICPN site.
Dr. Tomohiro Ueda recently announced that a book on interstitial cystitis was released in Japan this April. Written by five urologists and six patients, and appropriate for both patients and medical care providers, it is now available from the publisher, Igakutosho Shuppan, Tokyo. Cost:† 2800 yen (about 20 dollars). For additional information: Phone (+81-3-3811-8210) or FAX (+81-3-3811-8236). In Japanese
SEXUALITY AND IC
This month, the ICN Survey Center (http://www.ic-network.com/survey/) offers a rare opportunity for patients to participate in a live, on-line study on female sexuality and IC. Dr. Stanley Zaslau, West Virginia University of Medicine, is conducting the study and hopes to learn more about how IC impacts sexuality and relationships. Just 19 questions long, the survey will take only minutes to complete and is your chance to contribute to vital IC research. Men, take heart. We will be adding a survey for male sexuality shortly.
The ICN offers the only Eosinophilic Cystitis Resource Center in the US and we are thrilled to share the news that a new research team at the University of Utah has developed a treatment that they believe will help control EC symptoms. Dr. Gerald Gleich has studied eosinophilia related conditions for more than 35 years. His original interest was with asthma and dermatology patients. He has, for the last year, been working on a new treatment for EC. When the paper is published, well be the first to share the good news. In the meantime, and because so few US physicians have taken in interest in EC research studies, were delighted to share this information with our EC subscribers. I spoke with Dr. Gleich today. He often consults with physicians around the country who are caring for EC patients. If you would like more information on Dr. Gleich, as well as contact information, please visit our EC Resource Center at: http://www.ic-network.com/ec/
A new research study from Michigan highlights the danger of resistant bladder infection. Recent Antibiotic Use A Risk Factor For Trimethoprim-Sulthamethoxazole Resistance demonstrates how rapidly bacteria can become resistant to medication. In this case, they compared women who had taken these antibiotics for treatment of a simple UTI with women who had not recently taken the antibiotics. Women who had taken the antibiotics were 16 times as likely to be infected with a resistant infection.† Though IC patients do not usually have infection, many patients have self medicated with antibiotics just in case.† This study offers a compelling reason for you not to do so without verifying, via culture, that you have infection. Indiscriminate use of antibiotics and self medication has serious risks.† Clinical Infectious Diseases, 2002;34:1061-1066
The call for a revision of the diagnostic criteria of IC grows louder with a new study released this Spring from Sweden which provides yet more compelling arguments to those outlined in the last two ICN newsletters. The original diagnostic criteria for IC (the NIDDK criteria) were originally developed for use in research studies. Unfortunately, many doctors have tried to apply that rigorous standard to their medical practice, leaving some patients left out of a diagnosis even though they have many of the symptoms. For example, the NIDDK criteria clearly excludes children from a diagnosis of IC yet research completed in 2001 demonstrates that children may indeed have IC if the diagnostic criteria were adapted to their small bladder physiologies. It is time for a neutral, international committee to convene to discuss and propose new standards. The IICPN is striving to make this happen. (See our International Reports below for the Japanese position on diagnostic criteria).
URINE TESTING FOR
Wouldnt be easier if we could diagnose IC based upon a urine test? Research in this area continues with the release of a study by Erickson and colleagues, who conclude that the anti-proliferative factor may indeed be the most likely candidate for use in future urine tests! Once again, this line of research looks promising.†
To obtain a free sample, just call: 1-800-994-4711
Medical Care Provider Resources
LOCATING A MEDICAL
Are you looking for a physician who specializes in pelvic pain? You can search the international† member listings of the International Pelvic Pain Society for a provider at: http://www.pelvicpain.org/member.asp. You can also search our US and world doctor listings in the ICN Physician Resource Center. We update our lists monthly and welcome the submission of new names and listings.
Several urology conferences occur throughout the year in the USA and abroad. Of special note is the American Urology Association conference (May 25-30th), which will offer an extensive poster session dedicated to IC on Sunday, May 26th at 10am.† Weve seen the studies to be presented and they are exciting. Unfortunately, we cant discuss them more until they are officially released on the first day of the conference. Lowell Parsons, MD, a featured speaker in the ICN Guest Lecture series last year, will be conducting, yet again, a course for physicians on IC. This will occur on Wednesday, May 29th, at 5:45AM. The ICN will be offering live updates from the conference on our web site (May 26-30th). Check our Announcements message board frequently!
of Urological Nurses (SUNA),
33rd Annual Conference, May 24-28, 2002, Hilton Orlando, FL
Intl Society of Pelvic Pain, August 15-16, 2002, San Diego, California
InterstitiŽle Cystitis PatiŽntenvereniging (ICP), November 14 15, 2002, Netherlands
NIDDK/ICA Bladder Symposium, November 14 15, 2002, Tulsa, Oklahoma
ICN Featured Writers
The ICN feature columnists are Bev Laumann (Fresh Tastes by Bev) and Gaye & Andrew Sandler (IC Lifestyles), whose columns have been reprinted time and again by patients and support group leaders throughout the world. This month, we also welcome a new columnist, patient Mary Fitzpatrick, who begins her Diaries of an IC Patient series with a delightful column about her child and her IC.
IC LIFESTYLES BY
GAYE & ANDREW SANDLER
March:† IC, Hormones, Perimenopause and Menopause
There is no doubt that hormones can play havoc for men and women with IC. Gaye sheds light on why this occurs in women during menstrual, PMS, perimenopause, menopause and how the bladder actually changes. She also discusses hormone replacement therapy and estrogens.
April/May:† Pelvic Floor Dysfunction and IC
Pelvic Floor Dysfunction (PFD), or vaginismus, is a common condition in IC patients. PFD causes the pelvic floor muscles to involuntarily spasm in response to an irritant. This month, the Sandlers discuss pelvic floor spasms and how they can be treated, including the pros and cons of e-stim. This column features an interview with Betty Sound, a physical therapist who specializes in pelvic floor therapy at Touro Hospital in New Orleans.
DIARY OF AN IC'ER
May 2002:† No Secrets
IC patient Mary Fitzpatrick writes about the ups and downs, joys and sorrows of life with IC, with courage and a rye smile. Her columns are real-life IC, which show how this young mother not only survives but thrives. We hope that you enjoy her diary. She's guaranteed to make you smile and perhaps challenge you as well! Her first column No Secrets shares her experience with her five year old daughter.
IC Consumer Awareness Alert - False Hope or Good Advertising? You
Be The Judge
because a company can pay for ads doesnt mean that the product is
effective at treating IC
For a minimum fee, I could place an ad on most major search engines claiming that lemon juice can reduce the symptoms of IC. Does lemon juice treat IC? No! But it serves as a great example. Many companies are trying to get your attention. It makes sense to be on guard. Case in point is a new company currently promoting a sugar pill (D-Mannose) as a treatment for IC with a vague claim that it might control e-coli infections. Yet, we know that IC patients rarely test positive for infection. Their product is a sugar pill, much like the placebo used in some research studies. There is absolutely no clinical evidence that sugar of any type (or lemon juice for that matter) will treat IC. This is, in my opinion, an offensive advertisement.
#2 Understand the difference between anecdotal information and research studies. Would you buy a product where the company states that they have no clinical evidence that it works? Of course not, but if it is written cleverly, you might not understand the difference.† The web site mentioned above says that they have no clinical evidence that their product works but tease you by saying that they have anecdotal reports that it may have helped someone. Anecdotal reports are meaningless. We dont know who said it, if they had IC, if they were taking any other treatments, if they still have symptoms, etc.† According to the Agency for Health Care Policy and Research, the least reliable information (an F score) is anecdotal information, biased testimonials from patients or manufacturers, back-of-the-magazine ads and TV infomercials. Remember, too, that speculation means that someone is guessing that it might work. Is it worth your hard earned money for a guess?
#3. Learn the
When you visit any website, make sure that you review the research cited to see if it actually uses their product. For example, another company on the web is advertising heavily to sell their brand of quercetin. Yet, on closer inspection, they actually reference the CystaQ research by Dan Shoskes, MD and colleagues (ICN Guest Lecture Series February 2001) as justification for purchasing their brand of quercetin. Frankly, this seems wrong. If a company wants our precious money, we expect them to do the research proving that it can help IC first.
#4.† Verify the
source of the information and who you are talking with.
#5. Before you
buy it, check for quackery.
Theres a wonderful website called Quackwatch (http://www.quackwatch.com) that lists most of the health scams currently on the web. It is an informative and useful tool. So, if you have someone tell you to buy colloidal silver for IC, for example, you can find an article about this on the quackwatch web site. Colloidal silver is not believed to be helpful for IC.
Its no secret that the ICN (and most other IC organizations) has advertisers and/or sponsors. In our case, weve worked with AkPharma, Farr Laboratories, Alza Pharmaceuticals and Desert Harvest. Each one of these companies has made the commitment to conduct a variety of research studies verifying their products usefulness to IC patients. If you visit their web sites, you will find useful, credible information. We are sincerely grateful for their dedication to the IC movement and in supporting our mission.
In conclusion, if a company is trying to sell a product to you, without any research showing that their specific product works with IC, or they try to convince you by saying that they have anecdotal reports that it may have helped some patients, it makes sense to look much more closely at what they are trying to sell. Be a wary consumer. Ask for research studies. If it sounds too good to be true, it likely is too good to be true. Well be the first to share the news of that elusive cure for IC. May it be soon! (By Jill Osborne, ICN Founder)
CystaQ Is A Promising New Option
Research presented at the 2001 American Urological Association conference demonstrates that CystaQ, a quercetin containing complex, is well tolerated and provides significant symptomatic improvement in patients with IC. CystaQ represents an important treatment alternative for patients, particularly before resorting to more drastic measures like surgery.†Special offer and discount! Review the latest CystaQ research study.
So, what can you eat? Focus on a whole, fresh natural diet rather than fast, pre-manufactured foods that often have dozens of chemicals that can irritate the bladder. Fresh grilled meats (chicken, beef, fish, pork) are IC standards, though youll want to avoid BBQ sauce, ketchup and steak sauce. Preserved meats and stove top packaged or frozen meals may be more of a problem because they have extra preservatives and salts. Vegetables, in general, are quite IC friendly with the exception of tomatoes (acidic) and, for some, asparagus. So, a fresh bowl of green beans, sweet potatoes, baked potatoes, can be hearty and very filling. Salads (lettuce, carrots, celery, sprouts, etc.) are also quite friendly though salad dressing can be a challenge. Many patients enjoy using flavored olive oils as an IC safe salad dressing.
Breads are usually IC friendly. But, some of us have irritable bowel syndrome that may be irritated by some grains. In my case, I cant eat oats without having intense intestinal cramping because Im allergic to oats. Ive found one brand† (Food For Life Ezekial Flourless Breads) that is bladder and bowel friendly for my tender system.† They offer low salt wheat, cinnamon raisin and sesame breads, with excellent protein, roughage and a low glycemic index score. This brand comes frozen and can be found in many specialty food stores.
Fruits are the hardest
and most confusing part of the IC diet, especially for patients who are
juicers. The most acidic fruits are oranges, grapefruit, lemons, limes,
cranberry and even strawberries. But, many patients report that pears
are very IC friendly. Some patients can tolerate melons (honeydew, watermelon,
etc). Still others find that mild apples (like Gala apples) are IC friendly.
In my case, I love tropical fruits and they rarely bother my bladder,
especially mango and papaya. I can even drink a small amount of pineapple
juice. But, I cant drink apple juice at all. Go figure! It will
take time, patience and testing for you to find fruits that are good for
Multi-vitamins are often a frequent source of irritation for patients. Vitamin C complexes can be extremely acidic. An Ester-C may be more tolerable, but even that can be too strong for some patients. B-6 and magnesium can also irritate the bladder. As Bev Laumann reports in Taste of the Good Life, Another interesting phenomenon is that although some vitamin supplements cause IC symptom flares, the same amount of those vitamins when found in food appear not to have the effect.† So, following our theme of a natural diet can easily give you the necessary amounts of vitamins. Broccoli, for example, is an excellent source of vitamin C.
use an elimination diet
to find the foods that irritate their bladders. You can learn more about
this in the ICN
Patient Handbook. However you choose to proceed, remember that quantity
may be an issue. Start with a small amount of a risk food (testing only
one food a day) and complete a voiding diary. If your pain, frequency
or urgency got worse, then that food should stay on your bad list. But,
if you feel good the next day, you can probably add SMALL amounts of that
food to your diet. Dont forget that Prelief
is now available and can help reduce the acids in food as well! Always
remember that your goal is to help reduce the inflammation in your bladder.More
information on the IC diet can be found:
A Taste of the Good Life A Cookbook for an IC Diet:† http://www.ic-network.com/shop/html
The IC Patient Handbook: http://www.ic-network.com/handbook/
Fresh Tastes by Beverly: http://www.ic-network.com/bev/
The IC Chef: http://www.ic-network.com/icchef/
Brief Guide to the Best IC Resources On the Web
A new one-stop guide to the many IC resources on the web
ICN Patient Handbook
New chapters now available
Canada IC Resource Center
With the sad demise of the CICS last year, IC patients in Canada now have a new resource for IC information, the Canada IC Resource Center (CICRC). On this web site, you can find a list of support groups that are continuing to run independently, disability information and a guide to drug assistance programs. The CICRC also offers message boards just for patients in Canada.
Under-development and offers customized information for Australian patients.
ICN Coloring Book A Kids Guide to IC
One IC mom recently wrote to us about this special project: What a wonderful idea. I just discovered the coloring book and plan to share it with my four and six year old children. It is very difficult for them to understand IC issues. This will certainly help me to talk to them about the disease. I have one comment. My daughter sometimes feels as if she has done something wrong when I am unable to play with her or take her to the park. She feels as if I dont love her. Actually, she asked me if I still liked her as much as I used to pre-IC. This is REALLY HARD! It would be great if the book made it very clear that mom or dad having IC is not their fault. It does not change the way mom/dad feels about then and they are not doing anything wrong when mom/dad arent feeling well!. Well, we listened. The Coloring Book has been adapted to include these changes! Thank you for your feedback mom! If you are a mom with children and would like to talk with other parents, you can do so in our message boards!
IC Support Opportunities
The ICN was first developed by a California IC group leader, Jill Osborne, who was searching for a way to bring support to patients who were too ill to come to local support group meetings. Using AOL, Compuserve and, eventually, this web site, she has offered live, internet support group meetings for the past eight years. On some evenings, you'll find patients from England to Taiwan participating,along with our regular US and Canadian users! The ICN now offer three regular support group meetings a week, led by a compassionate team of support group leaders. We hope that they offer you comfort, encouragement and hope.
Newbie Chats: Mondays 4PM 7PM PST, 7PM 10PM EST
Evening Support Chat: Tuesdays 5-7PM PST, 8-10PM EST EST
Evening Support Chat: Wednesday 6-7PM PST
Mens Support Chat: Last Thursday of the Month, 6PM PST
If you are a first time visitor we encourage you to join in on the discussion. We welcome your thoughts, hopes, fears, tears, jokes and the support that you can offer to others living with IC. We invite and encourage a healthy exchange of opinions and disagreements. While we hope that you'll become an active participant and join in our discussions, feel free to simply hang out silently until you feel more comfortable posting a message. To our grizzled veterans, please be sensitive to the needs of newly diagnosed patients. They come into our support chats looking for encouragement and hope and that is exactly how we want them to feel when they leave. Our focus is support. No profanity or cursing please!
NEW USA SUPPORT
The ICN has supported independent IC support groups for many years and are pleased to share their information and listings with our users. In the past three months, seven new support groups have begun operation in the USA, including: Hawaii, California (SF Bay Peninsula), Florida (Hudson), New York (Albany), Ohio (Cincinnati), Utah (Orem) and Washington (Yakima).
|(J) ICN Office Schedule|
The ICN offices will be closed for phone support, for the taking and shipping orders from Tuesday, May 21 through Friday 31st, as we attend the AUA conference in Florida. Were sorry for the inconvenience. All orders placed during this time will be shipped the first week of June. If you are in need of support during this time, please visit the ICN message boards. Wish us luck!
New IC Resources
RESERVE YOUR COPY TODAY
The Vulvodynia Survival Guide by HowardI. Glazer, Ph.D., and Gae Rodke, M.D. Vulvodynia can be a serious problem for many IC patients. This promises to be an outstanding resource for IC patients written by two leading authorities. $15.95 for the public ($13.70 for ICN subscribers). Reserve your copy today! Well be shipping some time in July (or earlier, if we receive them). Please note that we will not process credit cards until we are ready to ship.
New Back Cushion - Gaye Sandler has announced that she is near completion in the development of her new back support cushion. Designed for patients struggling with sitting and/or need extra back support, the cushion will be available this summer. Development has taken place for the last year and the cushion was tested by patients in her local IC support group and at the Bladder Matters conference in Boston last year. Made of high-density foam, the cushion is placed behind the back, supporting the upper back and sacrum. Gaye says that it will help the lower back to relax, easing the pressure on the pelvic floor. Check back to the ICN in the next couple weeks for pricing and availability.
Bladder Friendly XLarge Microwaveable Heating Pad. Custom made for the ICN, this pad is bigger, heavier has still has the wonderful scent of our smaller heating pads.
The Travel John! Perfect for patients who drive long distances or worry about restroom access. This purse size packet is quickly becoming a best seller. Keep a pack in each car, and one in your purse. Whether youre in a gross bathroom and dont want to sit, or want to be discrete in your car, this is the perfect option! Currently in the sales section of our shop!
Holiday & Vacation Kit: Just in Time For Summer! Containing a chair cushion perfect for car drives, planes and surfboards (just kidding!), two 3 packs of Travel John, one perineal wash bottle and 10 bodiheat heating pads. ($49.00)
Are you a newly diagnosed
patient looking for the best IC books & materials? Our Newly Diagnosed Kit
includes the first three books listed below, as well as a video and a
variety of samples. It is only $50.00 for all, saving $8.00 off the list
price! Order it on-line today! We usually ship within 48 hours.
The Interstitial Cystitis Survival Guide by R. Moldwin
Patient to Patient: Managing IC and Related Conditions by Gaye & Andrew Sandler
A Taste of the Good Life: A Cookbook for an IC Diet by B. Laumann (1998
Nolos Guide to Social Security Disability
The Couples Survival Workbook
Breaking the Bonds of IBS by Barbara Bolen, Ph.D. (2000)
The Chronic Pain Control Workbook by Catalano & Hardin (1996)
Relaxation & Stress Reduction Workbook, 5th ed. (2000)
Living Well With A Hidden Disability
Stop the Anger Now
Self Nourishment Companion
Shy Bladder Syndrome
NEW! Hypnotize Yourself Out of Pain
NEW! The Post Traumatic Stress Disorder Book
OTHER HEATING PADS
Bodi Heat Adhesivable Heating Pads
Mid Size Bladder Friendly Microwaveable Heating Pad
Interstitial Cystitis Network, the largest free archive of IC information
in the world, is made possible by subscribers, advertisers and purchases
via the ICN Shop. Rather than ask for a membership fee up front to
receive this newsletter (by e-mail), participate in our support groups
and to purchase materials, we want you to use our web site and get
the support you need. If, over the long term, you find that we have
helped you, please support our work by becoming an ICN
Jill Osborne, Founder & Editor
Interstitial Cystitis Network
5636 Del Monte Court
Santa Rosa, CA 95409
(707)538-9442 - Voice
(707)538-9444 - FAX
"I believe that people of gentleness and caring can change the world. One unseen, unsung, un-rewarded kindness at a time." - Author unknown.
The information in the IC Network is provided with the understanding that the ICN (staff, volunteers, users, columnists) are not rendering medical services. Information found in text, e-mail, message boards, chat rooms are not medical recommendations nor should they replace necessary "face to face" consultations with a qualified medical professional.