Interstitial Cystitis Network Newsletter
May 2002

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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!

In this issue:
  • Meet the IC Expert Guest Lectures: Dr. Theoharis Theoharides Offers Riveting IC Lecture! Lecture Next Tuesday! Upcoming Schedule for May and June!
  • International News: The Importance of International Collaboration, Eastern Europe’s Desperate Need For IC Resources, Italy’s First IC Conference A Success, Japan Convenes Groundbreaking Symposium on IC, Book on IC Now Available in Japanese
  • Research News & Update: Participate in a WVU IC & Sexuality Study Online, Eosinophilic Cystitis Update, Danger of Drug Resistant UTI’s, Sweden’s Case for New Diagnostic Criteria for IC
  • Medical Care Provider Resources: Are You Looking for a Physician Specializing in Pelvic Pain?
    Conferences & Events: AUA Annual Meeting (May 26-30) to feature several new studies on IC.
  • Featured Writers & Columnists: Fresh Tastes by Beverly Laumann, IC Lifestyles by Gaye & Andrew Sandler, New! Diary of an IC’er by Mary Fitzpatrick
  • IC Consumer Awareness Alert: False Hope or Good Advertising? You be the judge!
  • Self Help Tip of the Month: Are you confused by the many “lists” of IC foods?
  • ICN Projects & Updates: Brief Guide to the Best IC Resources On the Web, Patient Handbook, Canada IC Resource Center, ICN Australia, The Kid's Guide to IC
  • IC Support Opportunities: Online Support Meeting Schedule, New USA Support Groups (Hawaii, California, Florida, New York, Ohio, Utah, Washington)
  • ICN Office Schedule: Office Closed from May 22-May 30, 2002
  • New IC Resources in the ICN Shop: Introducing the Travel John

Meet the IC Expert Guest Lectures
Primary URL: http://www.ic-network.com/guestlectures/
Begun in 1998, the ICN Meet the IC Expert Guest Lecture Series is the only live and free lecture series available and serves to unite patients and providers throughout the world in their joint quest for new research and treatment strategies. This lecture series is free for all, generously co-sponsored by Akpharma (Makers of Prelief ), Farr Laboratories (Makers of CystaQ ) and other selected companies.

TRANSCRIPT NOW AVAILABLE
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.

UPCOMING LECTURES
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: jill@ic-network.com.


(B) International News
Primary URL: http://www.interstitial-cystitis.org/news.html
The ICN is pleased to be a founding member of the International IC Patient Network. Founded in 1999, its goal is to bring national IC organizations, researchers and patients together in a collaborative team to discuss the problems that IC suffers face and to propose joint programs and solutions.

THE IMPORTANCE 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 borders.

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: info@interstitial-cystitis.org.

EUROPE/ITALY
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 week’s Congress on IC and Related Condition’s 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 Jane’s reports at: http://www.interstitial-cystitis.org/news.html

JAPAN
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


(C) Research Update
Primary Url: http://www.ic-network.com/library/

SEXUALITY AND IC RESEARCH STUDY
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.

EOSINOPHILIC CYSTITIS
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, we’ll 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, we’re 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/

DRUG RESISTENT UTI’s
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

DIAGNOSTIC CRITERIA
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).

  • Peeker R, Fall M., Toward a Precise Definition of Interstitial Cystitis: Further Evidence of Differences in Classic and Nonulcer Disease.J Urol. 2002 Jun;167(6):2470-2472. (Sweden)
  • Irwin PP, Interstitial cystitis - a time for revision of name and diagnostic criteria in the new millennium? BJU Int. 2002 May;89(7):795. No abstract available. (England)
  • Peeker R., Fall M, Interstitial cystitis – a time for revision of name and diagnostic criteria in the new millennium? BJU Int. 2002 Apr;89(6):637-8. No abstract available. (Sweden)

URINE TESTING FOR IC?
Wouldn’t 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.†

  • Erickson DR, Xie SX, Bhavanandan VP, Wheeler MA, Hurst RE, Demers LM, Kushner L, Keay SK., A Comparison of Multiple Urine Markers for Interstitial Cystitis. J Urol. 2002 Jun;167(6):2461-2469.
OTHER ARTICLES OF INTEREST
  • Bremnor JD, Sadovsky R., Evaluation of dysuria in adults. Am Fam Physician. 2002 Apr 15;65(8):1589-96.
  • Nyska A, Nold JB, Johnson JD, Abdo K. , Lysosomal-storage disorder induced by elmiron following 90-days gavage administration in rats and mice. Toxicol Pathol. 2002 Mar-Apr;30(2):178-87.
  • Buffington CA, Teng B, Somogyi GT, Norepinephrine content and adrenoceptor function in the bladder of cats with feline interstitial cystitis. J Urol. 2002 Apr;167(4):1876-80.
  • Rothrock NE, Lutgendorf SK, Hoffman A, Kreder KJ., Depressive symptoms and quality of life in patients with interstitial cystitis. J Urol. 2002 Apr;167(4):1763-7.
  • Gray M, Albo M, Huffstutler S., I nterstitial cystitis: A guide to recognition, evaluation, and management for nurse practitioners. J Wound Ostomy Continence Nurs. 2002 Mar;29(2):93-102.
  • Steinhoff G, Ittah B, Rowan S. , The efficacy of chondroitin sulfate 0.2% in treating interstitial cystitis.
    Can J Urol. 2002 Feb;9(1):1454-8.
  • Parsons CL, Forrest J, Nickel JC, Evans R, Lloyd LK, Barkin J, Mosbaugh PG, Kaufman DM, Hernandez-Graulau JM, Atkinson L, Albrecht D.
  • Effect of pentosan polysulfate therapy on intravesical potassium sensitivity. Urology. 2002 Mar;59(3):329-33.
  • Moldwin RM, Sant GR. , Interstitial cystitis: a pathophysiology and treatment update. Clin Obstet Gynecol. 2002 Mar;45(1):259-72. Review.
  • Chai TC. , Diagnosis of the painful bladder syndrome: current approaches to diagnosis. Clin Obstet Gynecol. 2002 Mar;45(1):250-8. Review.
  • Parsons CL. , Interstitial cystitis: epidemiology and clinical presentation. Clin Obstet Gynecol. 2002 Mar;45(1):242-9. Review.
  • Myers DL, Aguilar VC. Gynecologic manifestations of interstitial cystitis. Clin Obstet Gynecol. 2002 Mar;45(1):233-41.

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(D) Medical Care Provider Resources
http://www.ic-network.com/md/

LOCATING A MEDICAL CARE PROVIDER
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.

CONFERENCES & EVENTS
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.† We’ve seen the studies to be presented and they are exciting. Unfortunately, we can’t 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!

Society of Urological Nurses (SUNA), 33rd Annual Conference, May 24-28, 2002, Hilton Orlando, FL
Int’l 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


(E) 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.

FRESH TASTES BY BEV

http://www.ic-network.com/bev/


March & April 2002:† A Two-Part Column on IC Friendly Mexican Food!†
Do you love Mexican food but are afraid to try it? Bev has done her research and shares tips to find the best IC friendly salsas, tortillas, cheeses, veggies, poultry, and tasty desserts. Recipes include: Orange Chicken Oaxaca, Sopa de Albondigas (Meatball Soup), Churros, Maria’s Orange Bizcochitos, Mexican Coconut Flan.

May 2002:† A Bladder Friendly Disease Fighter
Are you worried about your vitamin C intake?? Have you struggled to find a vitamin C pill that doesn’t irritate your bladder? Bev solves this problem with broccoli. It has, per ounce, more vitamin C than oranges and is bladder friendly. Recipe of the month: Broccoli with a Caraway Cheese Sauce .

IC LIFESTYLES BY GAYE & ANDREW SANDLER
http://www.ic-network.com/iclifestyles

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 Sandler’s 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
http://www.ic-network.com/icdiaries/


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.


(F) IC Consumer Awareness Alert - False Hope or Good Advertising? You Be The Judge
Primary URL: http://www.ic-network.com/newsroom/


(By ICN Founder Jill O.) Very few IC patients are can easily afford the hundreds of dollars needed for physician visits, medication, and/or diagnostic tests a year. Some patients must save their pennies to travel hundreds of miles (or even cross oceans) to find physicians who can treat them. Still others are forced to choose between food and medical care. One resource for struggling patients is the “Drug Assistance” programs offered by most pharmaceutical companies. These often make medications available, at no cost, to low income patients and can help ease their financial burden.† (The ICN has a list of current drug assistance programs in the USA and Canada). But, a new problem is emerging on the internet, a growing number of companies selling expensive treatments or supplements for IC that, upon closer examination, are questionable. We’ve created a list of helpful tips and resources to help you judge the advertising that you encounter

#1 – Just because a company can pay for ads doesn’t 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 don’t 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 research
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.
Beware of sales representatives pretending to be patients. We’ve had this happen several times in our message boards. They’ll post “I was helped by this. Come visit this web site for more information.” Their intention is to get you to buy! We caught one salesman using three different names to sell their “product.” Ads like this violate the terms of use of the ICN message boards and the spirit of our web site.

#5. Before you buy it, check for quackery.
There’s 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.

It’s no secret that the ICN (and most other IC organizations) has advertisers and/or sponsors. In our case, we’ve 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. We’ll be the first to share the news of that elusive cure for IC. May it be soon! (By Jill Osborne, ICN Founder)

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†(G) Self Help Tip of the Month: Are you confused by the many “lists” of IC foods?


Recently, a newly diagnosed IC patient contacted the ICN stating that she had stopped eating all solid foods because she was afraid that she would irritate her bladder. She was also very confused by the different lists of “good” and “bad” foods that she had found. She didn’t know what to eat and was barely existing on rice, milk and water. It’s very common for newly diagnosed patients to be confused about diet but, with some basic education, you’ll find that there are many foods that are IC friendly. One key piece of advice, however, is to not take those lists literally. The IC diet is very INDIVIDUAL and what one patient may find irritating, another patient may be able to tolerate in small (or large) amounts.† It will take some time to find your bladder friendly foods. Here are some basic, simple tips that might be helpful. At the end of this article, we include references to more information and recipes.

If you’re struggling with diet, try thinking of your bladder as having little wounds and/or inflammation in it. Your job is to avoid those foods that would irritate those wounds, such as acids, alcohols and heavy salts. The most common IC irritants are coffee (even decaf), tea, herbal teas, sodas, diet sodas and fruit juices (cranberry, orange, lemonade, etc.) You would not pour acid on a wound on your hand, so why would you pour acid on a tender, wounded bladder. Worse, if you poured acid on the same wound every day, it would become more inflamed, irritated and painful. Therefore, the great majority of IC patients find relief from some their symptoms and can prevent the onset of future diet induced flares.†

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 you’ll 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 can’t eat oats without having intense intestinal cramping because I’m allergic to oats. I’ve 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 can’t drink apple juice at all. Go figure! It will take time, patience and testing for you to find fruits that are good for you.

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.

Most patients 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. Don’t 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/
Prelief: http://www.prelief.com


H. ICN Project Updates

Brief Guide to the Best IC Resources On the Web
http://www.interstitialcystitis.info
A new “one-stop” guide to the many IC resources on the web

ICN Patient Handbook
http://www.ic-network.com/handbook/
New chapters now available

Canada IC Resource Center
http://www.canadaic.com
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.

ICN Australia
http://www.icnaustralia.com
Under-development and offers customized information for Australian patients.

ICN Coloring Book – A Kid’s Guide to IC
http://www.ic-network.com/coloringbook/
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 don’t 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 aren’t 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!


(I) IC Support Opportunities
http://www.ic-network.com/chat/
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.

OUR SUPPORT CHAT SCHEDULE
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 GROUPS
http://www.ic-network.com/activism/supportgroups.html
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. We’re 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!


(K) New IC Resources
Primary URL: http://www.ic-network.com/shop/html


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! We’ll 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.


COMING SOON
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.
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NOW AVAILABLE!
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 you’re in a gross bathroom and don’t 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.

RECOMMENDED BOOKS
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
Nolo’s 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

The 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 subscriber.

Jill Osborne, Founder & Editor
Interstitial Cystitis Network
5636 Del Monte Court
Santa Rosa, CA 95409
(707)538-9442 - Voice
(707)538-9444 - FAX
E-mail: jill@ic-network.com

"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.