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January 2007 - ICN Site News - Volume 7, Number 1
Read This Newsletter On The Web
In this issue:
1. Fall/Winter IC Optimist Now Available
2. "You Are Not Alone" a new educational booklet on IC
3. IC In the News - MN-001 Clinical Trial Releases Disappointing Results, Painful Urination, Watson Licenses Uracyst
4. Canadian IC Patients Struggle To Find Care
5. Clinical Trial Announcements - John Hopkins Pain Study
6. When Sex Hurts - A New Support Community
7. Consumer Awareness - Acetaminophen Recall
8. Fresh Tastes by Bev - A Winter Dinner
9. Hot Discussion Topics - IC Success Stories
10. 2006 ICN Holiday Assistance Program
11. New Support Groups Launched in USA - MN, GA, CO, CA, NV, MI
12. What's New in the ICN Shop? - Valentines Day
Fall/Winter 2007 IC Optimist Now Available
The IC Optimist is the quarterly newsletter of the IC Network available through paid subscriptions and/or the purchase of individual copies from the ICN Shop. We're delighted to present our newest edition, available for purchase by email or in print!
 In This Issue
Challenging The Old School Beliefs of IC
With last Fall's international conference on IC, the divisions in the IC community continue to expand as "old school" researchers resist new approaches to IC research, treatments and patient care. Dr. Matt Rosenberg shares his thoughts on new epidemiological data on IC that suggests that up to 12% of women could show early signs of IC. He believes that the early epidemiological studies used the wrong survey when they developed their population statistics. He also shares his current approach to treating IC in his clinic. Dr. Rosenberg is one of the up and coming young researchers who wants to look at IC from a fresh, new perspective.
Young Patients Struggle For Care
Stacey Shannon has offered a lovely article that shares the experiences of teens with IC, not only in finding urologists who will treat them but also in receiving caring treatment for their pain. Two young women courageously share their struggles and successes. We must all remember that there are no pediatric urologists who specialize in IC, as yet. This needs to change quickly so that all children and teens can receive and compassionate treatment. Shouldn't there be one research center that specializes in treating those under 18??
Is Pressure Pain?
Stacey also covers one of the true mysteries of IC. What is that strange sensation of urinary pressure that some patients struggle with? Is it pain??
Why Smoking Can Prevent Healing
Released late last year, the University of Florida has revealed yet more devastating effects of smoking on the human body, that the 4,000+ toxic byproducts found in cigarette smoke (and the smokers urine) actually prevents cell repair and healing. If you're a smoker struggling with IC, you'll improve your odds of recovery if you change this habit in 2007!
IC In the News
The latest IC news from journals, pharmaceutical companies, news organizations, urology websites and mor including a fascinating new study that proves that both the bowel and bladder share some of the same nerves, thus explaining why so many of us may have both bowel and bladder irritation.
Going Bananas May Be A Good Thing
Though bananas are higher in potassium, they are bladder friendly for many patients. Bev Laumann, author of A Taste of the Good Life: A Cookbook for an IC Diet, shares her thoughts on bananas and offers a yummy recipe for Vanilla Banana Cream Pie.
IC Lifestyles - The Psoas Muscles and IC
Gaye Sandler, author of Patient to Patient: Managing IC & Related Conditions, is back after a long evacuation and recovery from Hurricana Katrina. She shares an interview she completed with Liz Koch, author of The Psoas Book, that helps us understand, yet again, how muscle health can contribute to our bladder discomfort. Patients struggling with pelvic floor dysfunction should find this helpful!
Clinical Trial Announcements
Two new clinical trials are announced in the USA and Canada. These are wonderful opportunities for patients who would like to try the newest, most cutting edge, therapies under development. You can learn more about clinical trials in our ICN Clinical Trial Resource Center.
Order your copy now! Available by email or in print!
 2. New IC Resource "You Are Not Alone" Now Available
Our New Years gift to you! "You Are Not Alone" is a free, 8 page educational booklet that provides new, updated information on interstitial cystitis and how it is diagnosed. It reviews current treatments, the role of diet and those tricky, often confusing IC flares. We think it will be perfect for you to use with family members, friends and others who still don't understand IC well.
8 pages
Available in PDF Format - You must have adobe reader to view!
Click here to view and download!
3. IC In The News
Medici Nova Release Disappointing Results for MN-001 Trials
MediciNova, Inc. announced the results from its Phase II/III randomized, double-blind, placebo-controlled clinical trial of MN-001 in 305 patients with moderate-to-severe interstitial cystitis (IC). MN-001 has been shown to block a number of the inflammatory mechanisms activated by mast cell degranulation that are important in the pathogenesis of inflammatory disorders including IC and asthma. In these models, MN-001 reduces bladder hyper-reactivity much in the same way that it reduces airway hyper-reactivity in the lung.
While MN-001 was well-tolerated in this clinical trial, MN-001 did not show a statistically significant clinical benefit compared to placebo at the doses tested in this trial (500mg once or twice a day for 8 weeks). Results indicated that IC patients were more than twice as likely to respond on 500 mg of MN-001 administered twice a day compared to placebo (25% compared to 12%, p=0.04) after 4 weeks of treatment. This difference, however, was not observed at 8 weeks due to continued improvement among placebo-treated patients. The response rate of patients treated with 500 mg of MN-001 once a day did not significantly differ from placebo at either 4 or 8 weeks.
"Although we are disappointed that MN-001 did not demonstrate a statistically significant improvement in IC symptoms, we believe that the compound warrants continued development, especially in bronchial asthma where positive clinical trial results have been observed at higher doses," said Yuichi Iwaki, M.D., Ph.D., Executive Chairman and CEO of MediciNova, Inc. "We plan further analysis of the data from our clinical trial in IC with the goal of reevaluating our clinical strategy and determining the future of this program."
Like other IC research studies, one barrier to the success of this study may have been the study group of moderate to severe IC patients who are, sadly, less likely to respond to many therapies. It would be very interesting to study the potential effectiveness of this product on more mild, newly diagnosed patients. Our gratitude to Medici Nova for pursuing this line of study. Let's hope that the company will continue their efforts!
Is Painful Urination A Symptom of IC?
Spend any time at an IC support group meeting and you'll hear more than a few patients discuss urethral pain as one of their more frustrating symptoms and, for some, their only symptom. Pain during urination is most commonly associated with a UTI or recent catheterization yet it could also be part of the IC syndrome. Jack Warren MD and colleagues at the University of Maryland report that 54% of 138 recent onset IC patients had painful urination. Read more about this in an article written by Phil Hanno on Urotoday.
Uracyst Licensed to Watson Pharmaceuticals
Watson Pharmaceuticals has acquired the US Rights to Stellar Pharmaceutical's Uracyst, a bladder instillation therapy in use in Canada and Europe to treat IC. Watson will be responsible for continuing clinical trials for the drug and, eventually, obtaining approval from the US FDA. We anxiously await the results of those studies and, when appropriate, a new, encouraging therapy on the market for IC patients in the USA.
4. Canadian Patients Struggle To Find Care
Earlier this month, the Winnipeg Free Press shared the story of IC patient Janice Starodub who has been unable to find a medical care provider in Winnipeg to treat her IC. Sadly, she is not alone. The Canadian health care system frequently falls short in diagnosing IC and, if a patient is lucky enough to receive a diagnosis, they often struggle to obtain treatment, particularly in the more distant and rural provinces.
Why? Patients may wait months or years to see a urology specialist, treatments are slow to be approved and those desperate for relief often fly to the US to see an IC specialist. We've had many phone calls from IC patients who report that their doctors say "There is nothing I can do for you." Others report that their physicians simply don't believe that IC is real or treatable. One area desperately lacking are physical therapists who can perform pelvic floor assessments and provide therapy.
Canada is not without superb clinicians. One of the best IC researchers in the world is based in Canada. J. Curtis Nickel, MD, FRCSC is a prolific researcher, author and speaker who is a Professor of Urology at Kingston General Hospital, Queens University at Kingston. His clinic has received research funding from the US based NIDDK to study IC. His colleague, Richard Henry, was one of the first to study the use of intravesical lidocaine in the bladder (aka rescue instillations or anesthetic cocktails), now considered one of the more promising treatments for IC in the USA. Unfortunately, they are in the minority.
Why is Canada ignoring many of its IC patients? What can we do to change this? Please share your ideas in our Canada IC Support Forum. If you are a patient from Canada and can recommend medical care providers who have treated your IC compassionately, please share their names!
Read Janice's story here!
Visit Our Canadian Support Forum!
5. Clinical Trial Announcements
Interstitial Cystitis and Pain Study
Researchers at Johns Hopkins Hospital are looking for women to participate in research studies concerning the mechanisms of pain in IC. If you are at least 18 years old and if you have been diagnosed with Interstitial Cystitis for at least 6 months you might be an appropriate candidate for these research studies. Participants will be asked to record symptoms related to interstitial cystitis in a diary at home for 4 months. Women who are pregnant or had a hysterectomy are not eligible. (Support: NIH/NIDDK; Principal Investigator: Ursula Wesselmann MD, Dept. of Neurology, Johns Hopkins Hospital.) For additional information, please contact: 410-614-4965 or email: womensresearch@jhmi.edu (RPN 97-08-15-01 Approved 10/03/2006 by JHIRB)
6. An Invitation To Join When Sex Hurts - Our New ICN Support Community
(From ICN President Jill Osborne) After fifteen years providing support for patients struggling with interstitial cystitis, painful bladder syndrome, prostatitis and pelvic floor dysfunction, I couldn't ignore the high number of divorces that were occurring due, in large part, to the impact of illness or disability on their sexuality. It was heartbreaking to see husbands or wives walking away from their partners under the mistaken assumption that the pain was mental or emotional rather than real. When Sex Hurts (http://www.whensexhurts.com) is our new private support community for ADULT patients struggling with intimacy and sex and we invite you to join us today!
Pain, illness, injury are part of life but when they impact our sexuality, conflict often occurs. Emotionally, men and women struggling with sexuality often struggle with feelings of "unworthiness" or that they are "damaged goods." Some may encourage their partner to have an affair while others may suggest ending the relationship prematurely.
As a couple, pain with sex can create tremendous confusion. Young couples often forget that sex doesn't have to be a major athletic event, that it can be a slow, intimate and alluring dance of the souls. Seniors often believe that they shouldn't discuss sex at all, including their partners and own medical care providers. How sad it would be to spend years doing the one thing that hurts when there are so many other things that don't hurt and can't be equally, if not more, satisfying. Singles shouldn't be left out of this discussion because they also seek long term relationships and true intimacy. But, how do you discuss your condition with your partners??? It's one of many difficult but workable questions.
Consider the case of Helen & Charles. She was furious with him that he wouldn't give her a hug. She felt that he should have been able to "sense" that she needed comfort. Charles, on the otherhand, was absolutely terrified to touch his wife. He loved her so much that he didn't want to hurt her further. Thus, they ended up on opposite sides of the bedroom... Helen mistakenly believing that he didn't love her and Charles desperate to find a way to show his love. In their case, the answer began with basic communication. Helen had to learn to ask for hugs, touches and caresses when she needed them rather than requiring, impossibly, that he could read her mind. Charles had to be willing to try and to learn that a touch and hug didn't always lead to pain and, most often, made them both feel much better!
So, take a moment and consider the following questions:
-- Should intimacy end when one partner is ill?
-- Should that couple abandon years of love over a few months without sex?
-- If a man loses his penis due to war wound , does that mean that he won't ever enjoy intimacy and sexuality?
-- If a woman has a complication after childbirth, should she force herself to have sex when the wound is fresh?
I hope that you agree that the answer to all of these questions is heartfelt NO. I hope that our new website will give you comfort, support and ideas that can help you rediscover your romance but I also need your help. This is one of the first websites ever built that covers painful intercourse and we need your thoughts, ideas and suggestions on how we can make this site better! Fair warning. Discussions will be quite intimate in nature. If you object to sexual discussions and/or photos, please ot use this website.
I look forward to seeing you over on the new site! It's so new that we need your ideas and postings immediately! Click here to visit WhenSexHurts.Com. - Jill O.
7. Consumer Awareness - Pain Medication Recall
FDA and Perrigo Company notified the public of a voluntary recall of
383
lots of acetaminophen 500 mg caplets manufactured and distributed under
various store-brands as a result of small metal fragments found in a
small number of these caplets. Consumers can determine if they are in
possession of a recalled product by locating the batch number printed
on
the container label. A list of stores that carry store-brands
potentially affected by this recall, as well as batch numbers affected,
is located on FDA's website.
8. Fresh Tastes by Bev - A Winter Dinner
Bev Laumann, author of A Taste of the Good Life: A Cookbook for an IC Diet, has contributed dozens of articles on diet to our site for many years now. We're reprinting an old favorite, perfect for these cold winter months! Yum!!
 (By Bev Laumann) As a kid I looked forward to winter. Though a cold wind-driven rain made getting me to school a challenge for the adults in my life, it offered my childish mischieviousness an outlet: puddles to stomp and splash in. So what if I got wet and cold? "Your hands are like ice!" my mom would exclaim as she shoved another layer of warm clothing on me. "Cold? Really?" I thought to myself. I suppose they were cold although the sensation didn't bother me. But as an adult I think I somehow became more sensitive to cold. And since my IC set in, just the thought of shivering outside in cold weather makes my muscles tighten and my bladder ache.
These days I nervously scan my wardrobe on winter mornings wondering if I can layer on enough clothes to keep warm without looking silly. An IC friend recently confided how she discovered the drawbacks of a too-short coat: a frozen backside that brought on a major case of aching bladder. Just today another fellow IC patient was reminiscing about how her bladder symptoms first came on during a skiing trip. And for the last ten years my IC has helped spawn "thermostat wars" at our house every winter: Charlie feels the place is roasting hot. Sweating, he turns the heater thermostat down as he walks by. Two minutes later I walk by and turn it up. Brrr... it's cold in here.
If watching snow settle from a house warmed by baking is your idea of wintertime enjoyment too, then you might like this oven-baked winter dinner. Almonds and fragrant orange combine with yams in a delightful Southern dish. The recipe makes an ample amount for two family dinners. A beef roast is a wonderful complement to the yams and also a way to solve a lot of food-related problems with minimum work-- buy a big roast that allows enough for two dinners on the weekend and some leftovers to slice thinly for sandwiches the following week. (A home-cooked roast is an easy way to supply yourself with preservative- free lunch meat.)
Click here to read her recipes & print out the full column!
9. Hot Discussion Topics - IC Success Stories
We LOVE IC Success stories! If the cold days of winter are depressing and discouraging you, we suggest a visit to the ICN Support Forums "Success Stories" message board where you can read about how other patients are fighting back and gaining success over their IC. Current topics include the merits of blueberries in reducing IC symptoms, the use of quercetin & glucosamine, using catheters to rest the bladder & much more! Read it now!
10. ICN Holiday Assistance Program Results - 2006
The ICN Angels For the Holidays Program is the only national assistance program provided to IC patients in need. In 2006, we focused on active duty military families, single parent families and senior citizens. Led by volunteers Jaime and Sandy, seventeen children and three adults received gift cards, food cards, clothing and/or gifts that, we hope, made their holidays merry and bright. Our gratitude to all of our IC angel donors, especially those of you who participate each year. Your kindness and generosity has touched dozens of families over the years. Special recognition to Jaime who has managed this program for several years now. Jaime, you're a kind, generous spirit who makes it all happen! Sandy, we so appreciate your help this year. You both are simply the best!
11. New Support Groups Launched in USA
Yahoo!! Seven new IC support groups in just a few months! This is wonderful news. New groups have been been started in:
- Twin Cities, MINNESOTA
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Lawrenceville, GEORGIA
- Monterey, CALIFORNIA,
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Las Vegas, NEVADA
- Metro Portland, OREGON
- Traverse City, MICHIGAN
- Firestone, COLORADO
On-Line Support Chats
The IC Network also offers live support group meetings in our chat room for patients who are too ill to attend local meetings. These chats are run by our dynamic team of support group leaders, Leslie, Kath & Linda!
WINTER 2007 CHAT SUPPORT GROUP MEETING SCHEDULE
1st & 3rd Monday of the Month, 5PM PST to 7PM PST
 12. What's New In The ICN Shop!
Authors Rodney Anderson MD and David Wise PhD have released a fourth edition to their book A Headache in the Pelvis: A new understanding and treatment for prostatitis and chronic pelvic pain syndromes. This new edition highlights the successful Stanford Protocol for treating pelvic pain, based upon the program developed in the Department of Urology at Stanford University.
You'll find an expanded illustrated discussion of pelvic pain trigger point release, as well as more discussion of home self treatment and self-trigger point release. It adds more accounts by patients in their own words of their experience with the Stanford protocol and much more.
For women with IC, the 4th edition gives a comprehensive illustrated discussion of female pelvic pain and the Stanford Protocol, female pelvic pain related trigger point release and discusses female related pelvic pain related to pregnancy! This is worth adding to your IC library especially if you don't have a clinic near you that provides pelvic floor treatment.
Click here to order the book now!
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 How long has it been since you've been able to give chocolate or eat chocolate for the holidays. Not anymore! Just for the IC Network, Queen Bee Gardens has assembled a customized assortment of amazingly rich carob truffles that are bladder sensitive, including carob fudge, blueberry, almond, macadamia nut and pecan. We have to gush about these truffles. They are large and could easily split by 3 or 4 people each or be savored by one lucky person over several weeks. Our favorite has got to be the blueberry truffle which is filled with carob fudge yet has a light, sweet blueberry fruit within. It's not overwhelming or cloying. It's absolutely delightful! Now available in the ICN Shop! Please note that we also have carob honeymoons & english toffee!
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