Interstitial Cystitis Newsletter
November 13, 2000
Did you know that you can research doctors who treat IC in the US and
throughout the world? The ICN Physician Resource page now lists physicians
in the USA, United Kingdom, Canada, Belgium, Denmark, the Netherlands,
India and many other countries. We also welcome submission of new names.
For more info, please visit: Physician Listings
In This Issue:
(1) ICN "Meet the IC Expert" Chat Schedule
The ICN "Meet the IC Expert" lecture series brings leading IC researchers
and physicians live, and at no cost, to IC patients via the web. We have
many exciting physicians and researchers scheduled for the next quarter.
This month, we showcase two well-known IC authorities.
November 14, 2000 - Dr. Ken Peters, Beaumont Hospital, MI
6PM PST, 9PM EST
Dr. Ken Peters of Beaumont Hospital in Royal Oak Michigan will be speaking
live in the ICN chat room tomorrow. Dr. Peters is one of the nations
leading specialists in treating IC. He is one of the primary researchers
in the use of BCG to treat IC. A delightful speaker, Dr. Peters brings his
wisdom and experience working with IC patients & treatments to the ICN
next Tuesday. He will share information on current BCG studies, as well as
other promising treatment approaches.
November 28, 2000 - Dr. Deborah Metzger, Helena Women's Health, Palo
Alto, CA 6PM PST, 9PM EST
Join us the week after Thanksgiving for a special chat on pelvic pain with
Dr. Deborah Metzger. She is recognized as one of the leading authorities
in the treatment of chronic pelvic pain. She has lectured extensively
throughout the world, published widely in peer-reviewed journals and
textbooks, and is one of the editors of Chronic Pelvic Pain: An Integrated
Approach, the first book on the subject. Her presentation "Beyond IC" will
discuss possible immune imbalances in the IC patients.
When: Tuesday, November 28, 2000, 6PM PST 9PM EST
As usual, we always welcome questions submitted in advance for our guest
presenters. Please send them to: jill@sonic.net
Our gratitude to Ken & Joy Gates for providing chat server space for our
events.
(2) Chat Transcript Now Available - Dr. John Warren
Dr. Warren's chat transcript "An update of current IC research: the
antiproliferative protein found in the urine of IC patients, antibiotics,
heredity & IC" is now posted and available for review in our chat
archives. The recipient of several prized NIDDK/NIH research grants, Dr.
Warren has dedicated much of his career to the study of interstitial
cystitis The University of Maryland IC research studies are considered
some of the most dynamic and promising in the US today, leading
investigations into the isolation of the antiproliferative (APF) protein
found in the urine of IC patients, the use of sequential antibiotics in
treating IC and a variety of other studies
(3) Genetics and IC: Looking for families to participate
(4) Bladder Health Awareness Week: Nov. 11 - Nov. 18, 2000
Research studies have demonstrated a strong connection between cigarette
smoking and bladder cancer. Indeed, cigarette smoke contains many
carcinogens which are filtered, at high concentrations, into the urine and
through this have been linked to the development of bladder cancer.
Some studies have suggested that at least half the cases of bladder cancer
would never have occurred if people didn't smoke. Furthermore, there is
evidence that exposure to second hand cigarette smoke may also increase
the risk for developing bladder cancer. Children whose parents smoke may
be at risk even if they have never smoked cigarettes themselves.
Bladder cancer will be newly diagnosed this year in over 55,000 Americans
and will account for the death of 12,000 of these individuals. AFUD's
Bladder Health Council has chosen to publicize this association in an
effort to warn people of the tremendous risk for developing bladder cancer
that they create for themselves and their loved ones by smoking
cigarettes. If you haven't quit, do it NOW!
(5) Fresh Tastes by Bev - November 2000
AN IC FRIENDLY THANKSGIVING MEAL
I gazed out the taxicab window watching as I sped by clumps of
blazing red maples and neat rows of white clapboard houses. It was
classic... a picturesque snapshot of Americana filled with fall colors and
crisp blue skies. I was on my way to the airport after four exhausting but
exhilarating days at the NIDDK bladder research symposium and ICA National
Meeting in Minneapolis. Riding along, a feeling of great calm and hope
came over me as I thought of all that had transpired in the previous four
days. Despite the pain and limitations of IC, we all do have so much to be
thankful for this year.
A few days earlier a bladder research symposium had opened in a
Minneapolis hotel ballroom, filled with more than 150 doctors and
scientists. All were working hard toward a greater understanding of, and
eventually a cure for, interstitial cystitis. Fifteen years ago such a
hope-inspiring scene would have been unthinkable. IC was a little-known
disease then and IC research was virtually nil. So this Thanksgiving,
when I sit down to dinner with my family and we contemplate what we are
thankful for, I'll be thinking of those IC researchers and how far we've
come.
Of course, there's also one other thing we can all be thankful for
every Thanksgiving: some worry-free dishes both we and our families can
enjoy eating. This month I've assembled a few bladder- friendly recipes
for traditional Thanksgiving foods. (No, I haven't come up with an IC
friendly cranberry sauce yet.) Be sure to try these out in YOUR kitchen
before Thanksgiving. If there's one thing that kitchen faux pas have
taught me it's that they always happen when I'm under pressure and trying
to cook several unfamiliar recipes at once.
PUMPKINS MUFFINS SANS PUMPKIN?
TURKEY
These days, easy-to-follow cooking instructions are usually on the
packaging for each bird, and if not, many cookbooks have detailed
instructions.
If you want a truly all-natural bird raised without hormones and
antibiotics, you can order "free range" turkeys up to a week before
Thanksgiving from natural foods grocery stores. I've found these
traditionally raised turkeys are actually a bit more flavorful, but still
just as tender and juicy, as the standard bird you find in grocery stores.
STUFFING
Onion strategy #1: If your bladder is extremely sensitive to onions,
first consider leaving out the onions entirely from your favorite
recipe.... at least in your portion. If others in your family have stomach
problems, perhaps they too would enjoy a stuffing without onions.
Otherwise, make slightly more stuffing than is needed for the turkey--
enough for about two more servings-- minus the onions. Set aside your
onion-free stuffing in a separate greased pan. Bake it, covered, for the
last 45 minutes that the bird is roasting. Cover or uncover it the last
few minutes depending on how it is browning.
For stuffing the bird: Stuff the bird lightly, don't mash it in.
Stuffing expands slightly as it cooks, so keep the stuffing fluffy. If you
don't want to cook your stuffing separately, stuff the bird almost full,
then put in your serving of onion-free stuffing last. When it's time to
remove the stuffing, take yours out first and set aside.
Onion strategy #2: If your bladder is only sensitive to raw,
undercooked, or excessive amounts of onions you might consider this trick:
Follow your favorite stuffing recipe but make sure you first fry the
onions in a bit of oil or margarine. Stir the chopped onions constantly
to avoid scorching, until they're clear and slightly golden. Drain
thoroughly on paper towels, then add them to the recipe and proceed as
usual. Frying heats them to a higher temperature than they'd be subjected
to in the bird. (High temperatures destroy some of the onions' sulfite
compounds that may possibly contribute to bladder symptoms).
Onion strategy # 3: Substitute fresh chopped chives for the fresh
chopped onion in your favorite recipe. Chives have a milder onion flavor
and may be less of a problem for some peoples' bladders.
Bread strategy # 1: If you have a favorite bread that doesn't give
your bladder problems, then by all means use it. Most white bread and
whole wheat bread can be used interchangeably in bread stuffing recipes--
just beware of bread that is loaded with preservatives. Don't fail to
consider French or Italian breads (minus the crust of course). It's
probably best to forget the boxed, prepared breadcrumbs. They have too
many preservatives and flavor enhancers to be safe, and who needs a
bladder pain flare-up on Thanksgiving? You can always make your own bread
from scratch and use that, but these days not many people have that kind
of time. So to be the safest, find bread without preservatives.
Bread strategy #2: Use rice instead of bread.
Read the following recipes of the month: Pumpkin Muffins, Rice Pilaf
Stuffing & Cornbread-Broccoli Stuffing at:
AN IC FRIENDLY THANKSGIVING MEAL
(6) Lessons From The Front - November 2000
"PUTTING THE 'HAPPY' BACK INTO THE HOLIDAY"
Buying presents. Writing cards. Decorating the house. Cooking.
Wrapping. Eating. Paying the bills. Whew! The holidays are stressful
enough for those who don't have a chronic illness. The overlay of pain,
fatigue, and disability make many of us with IC wish we could close our
eyes from November 1 to January 1 each year. Yet there is much to love
about the holidays-beautifully decorated houses and traditional carols are
among my "favorite things." How, then, do we manage to get what we want
from the holidays without giving up so much of ourselves?
KNOW YOUR LIMITS
SIMPLIFY THE HOLIDAYS
Above all, remember that BEING SICK IS HARD WORK! When you add the
extra work of the holidays, something has to give; better to forgo
Grandma's special cookies than to lose your health or your sanity. Happy,
healthy holidays to all.
©2000 by Susan Milstrey Wells. All rights reserved.
(7) New ICN Feature: The IC Chef Cookbook
ICN Asst. Mgr Diane has made a complete revision of our ICN on-line
cookbook, which had been off-line for over a year. It is now broken down
into several categories, including: Vegetables, Poultry, Beef, Pasta,
Seafood, Salads, Soups & Stews, Bread, Breakfast, Desserts and, yes, even
IC friendly Beverages. If you have a recipe to submit, please send it to:
icdiane@home.com
(8) Canada Interstitial Cystitis Society Information Updated
Sandra McNicol, leader of the Canadian IC movement, has provided a new
listing of support groups throughout Canada. For more information, please
visit the web page above.
(9) Welcome Denmark, Czech Republic & India to the IC movement
At the recent US IC conferences, several international physicians came
forward to announce that they would like to begin new patient
organizations in their countries, including Denmark, India and the Czech
Republic. We've added them to our current list of international IC patient
organizations and resources. For information on activities in their
countries, please contact them directly.
(10) Upcoming Conferences and Deadlines
November 18, 2000 - Netherlands - The ICP's annual congress for IC
patients will be at Congrescentrum Engels in Rotterdam, the Netherlands.
The language of this congress will be Dutch. Admission charge NLG 10.
Speakers will include:
(11) US National Conference Update
We're preparing an extensive conference update and feature story with what
we've learned at the recent NIDDK Bladder Symposium for the December issue
of this newsletter. Several new research studies and IC models were
discussed. As expected, the research of Susan Keay on the
antiproliferative factor (APF) was the highlight of the scientific portion
of the event. APF is a protein found in the urine of IC patients that
appears to limit the ability of the bladder epithelium to repair itself.
It appears to be manufactured by the bladder itself. The next phase of
research will be to identify the actual components and structure of this
protein.
We'll have much more information from the conference on our web site and
in our next edition. Check our What's New at the ICN page daily for new
stories about the conference.
(12) Pelvic Floor Therapist Listings
Are you looking for a physical therapist or physician who does pelvic
floor therapy? Do you have a physical therapist who has worked well with
your IC? We're compiling the list of therapists who work with IC patients.
You can now research therapists and/or recommend a therapist for our
listings.
(13) RIMSO Reporting Information
A small number of patients have contacted the ICN with concerns that RIMSO
seems to be more irritating with the newer formulation. If you had
previously found RIMSO/DMSO instillations to be comfortable, but have
found the newer batches more irritating, please contact the company and
file a report with their Customer Operations Department.
(14) IC Research Journal Update
Keay S, Kleinberg M, Zhang CO, Hise MK, Warren JW.
Riedl CR, Hohlbrugger G, Propert KJ, Schaeffer AJ, Brensinger CM, Kusek
JW, Nyberg LM, Landis JR.
RE: A Prospective Study of Interstitial Cystitis Results of Longitudinal
Follow-up of the Interstitial Cystitis Database Cohort J Urol. 2000
Goldman HB.
Ueda T, Tamaki M, Ogawa O, Yamauchi T, Yoshimura N.
Peeker R, Haghsheno MA, Holmang S, Fall M.
Denson MA, Grueling TL, Cohen MB, Redder KJ.
Peeker R, Aldenborg F, Fall M.
(15) Industry News: The ICN News Room
The ICN accepts press releases from various companies who work within the
IC and urology communities. We recently received a press release from
Medtronic, announcing that Interstim is nearing approval for Medicare
coverage as an implantable treatment for urinary control problems. Read
more about it at the URL above.
(16) ICN Drug Glossary Updated
The ICN offers a comprehensive drug glossary that lists various IC
treatments, including their manufacturers and availability in other
countries. This has recently been updated and is an ideal resource for
patients from countries outside of North America.
(17) ICN Holiday Outreach Campaign
Every year, ICN users share joy and support with IC patients and families
who are going through difficult times financially. From providing food
gift certificates to locating presents for children, we like to reach out
to families to brighten their holidays.
If you are an IC patient in need of food and/or gifts during the holidays
(including Thanksgiving, Hanukkah or Christmas), or are a patient who
would like to help others by participating in this campaign, please send
an email to: jill@sonic.net. Please provide your name, address, phone
number and, if applying, a description of how we can help you during the
holidays.
(18) New Books & Holiday Gift Items
We're preparing for the holidays here at ICN headquarters and have stocked
several new books & products for your use and as possible gift items.
These can be purchased on-line via our secure server, by phone, by fax or
US Mail. New items include:
BLADDER FRIENDLY HEATING PADS
IC CHAIR CUSHION
SARATOGA PRO TENS
RECOMMENDED BOOKS
**************************************************
Jill Osborne, Founder
"Do what you can, with what you have, where you are." - Theodore Roosevelt
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.
(1) Guest Speaker Schedule - Dr. Ken Peters & Dr. Deborah Metzger
(2) Chat Transcript Now Available: Dr. John Warren
(4) Bladder Health Awareness Week: Nov. 11 - Nov. 18, 2000
(5) Fresh Tastes: "An IC Friendly Thanksgiving Meal."
(6) Lessons From The Front: "Putting the 'Happy' Back Into the Holidays"
(7) New ICN Feature: The IC Chef Cookbook
(8) Canada Interstitial Cystitis Society Support Information Updated
(9) Welcome Denmark, the Czech Republic & India to the IC movement
(10) IC Conference Calendar
(11) US National Bladder Conference Update
(12) Pelvic Floor Specialist Listings
(13) RIMSO/DMSO Reporting Information
(14) IC Research Journal Update
(15) Industry News: Update on Interstim from Medtronic
(16) Drug Glossary Updated
(17) ICN Holiday Outreach Campaign
(18) ICN Marketplace: Books & IC Holiday Gift Items
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ICN Chat Central
Where: ICN Chat Central
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Dr. John Warren -An update of current IC research: the antiproliferative protein found in the urine of IC patients, antibiotics, heredity & IC.
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The University of Maryland Interstitial Cystitis Center is looking for
families with two or more diagnosed IC cases. Why? They are currently
researching genetics and IC. If you and your family would like to
participate, please send e-mail Linda Horne at:
lhorne@medicine.umaryland.edu.
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The American Foundation of Urologic Disease, Inc. (AFUD) offers the only
national US Bladder Awareness annual campaigns. This year, their focus is
on cigarette smoking and bladder cancer. Although IC is not connected with
cancer, smoking substantially increases your risk of developing bladder
cancer.
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We are so fortunate to have access to the knowledge of Beverly Laumann.
The author of "A Taste of the Good Life: A Cookbook for an Interstitial
Cystitis Diet," Bevs latest column will offer several new ideas for having
IC friendly foods during the holidays. Please note that we do not include
her recipes in our newsletter mailing. You can read those at no cost on
our web site at the URL at the end of this column.
by Bev Laumann
To those of you who also attended the ICA Annual Meeting in
Minneapolis and my workshop on Diet and IC, my thanks ... and my apology
for the um, "unusual" recipe for pumpkin muffins. I handed out to
everyone a sheet with a bunch of recipes, one of which was for Pumpkin
Muffins. Unfortunately, I didn't notice that when the recipe was formatted
for printing, some ingredients were missing... like the pumpkin. Ok, so
it was too late to fix the printing. I resolved to bring it to everyone's
attention at the diet workshop. But being the antihistamine-laden,
jet-lagged lame-brain that I was, and despite a gentle reminder from a
very nice lady in the audience, I totally forgot to mention it. So, mea
culpa... with my profuse apologies, here is the entire recipe for the
Pumpkin Muffins.
What's Thanksgiving without the traditional turkey? Luckily for us, a
fresh or frozen whole turkey is usually artificial additive-free (unlike
the processed "de-boned" rolls of turkey meat, which frequently have
preservatives added). Turkey is a bladder-friendly, naturally low-fat,
good source of protein. And by cooking a big enough turkey, there will be
plenty of leftover meat for sandwiches and other quick-fix dinner dishes
later.
Everyone has their favorite recipe, but most have two serious
drawbacks-- onions and bread. There are some workarounds though, that can
keep both your bladder and the rest of the family happy at the same time.
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Susan Milstrey-Wells, author of "A Delicate Balance: Living Successfully
with Chronic Illness," shares with us a delightful column on holiday
survival strategies in her ICN feature story series "Lessons From The
Front."
by Susan Milstrey-Wells
We may not be able to stay out of the malls entirely, but we can
learn to minimize the effect that stress has on our lives. Below are some
general tips that work well all year.
Simplifying the holidays, says Elaine St. James in Simplify Your
Christmas (Andrews McMeel, 1998), is not the same as organizing them.
"Simplifying is not about learning how to do more in less time," she says.
"It's about doing less so you'll enjoy it more." Try one of these
time-honored tips or start your own "new tradition."
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The IC Chef
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Canadian Support Group Listings
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International IC Organizations & Resources
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We are delighted to share information on IC events happening throughout
the world.
Dr J.J. Bade: IC: How does it start and where does it end?
Dr R.F. Kropman: IC and surgical "solutions".
Dr B. Bemelmans: IC and neuro-stimulation.
Further information may be obtained by e-mail from icpnl@dds.nl
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Pelvic Floor Specialist Listings
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Edwards Life Sciences: 1-800-843-8432
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The National Library of Medicine offers a free, large database of current
research articles & abstracts, which we use to gather the information,
included in this newsletter. To research these articles further, you can
visit the PubMed web site or visit your local medical library. Most
hospitals and universities have a library where you can research IC and
other medical conditions.
Pentosanpolysulfate inhibits mast cell histamine secretion and
intracellular calcium ion levels: An Alternative Explanation of its
Beneficial Effect in Interstitial Cystitis.
Chiang G, Patra P, Letourneau R, Jeudy S, Boucher W, Green M, Sant GR,
Theoharides TC. J Urol. 2000 Dec;164(6):2119-2125.
Bladder Epithelial cells from patients with interstitial cystitis produce
an inhibitor of heparin-binding epidermal growth factor-like growth factor
production.
J Urol. 2000 Dec;164(6):2112-2118.
Dec;164(6):2029-2030. No abstract available.
Editorial: Interstitial Cystitis - The Great Enigma
J Urol. 2000 Dec;164(6):1921. No abstract available.
Improvement of Interstitial Cystitis symptoms and problems that developed
during treatment with Oral IPD-1151T.
J Urol. 2000 Dec;164(6):1917-1920.
Intravesical Bacillus Calmette-Guerin and Dimethyl Sulfoxide for treatment
of classic and non-ulcer interstitial cystitis: A prospective, randomized
double-blind study.
J Ural. 2000 Dec; 164(6): 1912-1916.
Comparison of cystoscopic and histological findings in patients with
suspected interstitial cystitis.
J Urol. 2000 Dec;164(6):1908-1911.
Complete transurethral resection of ulcers in classic interstitial
cystitis.
Int Urogynecol J Pelvic Floor Dysfunct. 2000;11(5):290-5.
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HCFA PANEL AFFIRMS EFFECTIVENESS OF SACRAL NERVE STIMULATION FOR TREATMENT OF URINARY CONTROL PROBLEMS
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ICN Drug Glossary
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ICN Marketplace
We've found a microwaveable pad that is light enough to be placed on the
belly and fits perfectly over the pelvis. Why? The shape of a triangle, it
extends from the just below the belly button right down to the pubic bone.
Its unique design and sections allows the pad to bend and flex into the
most comfortable position for you. Handmade in soft flannel, it is filled
with rice & fall spices (clove, nutmeg, cinnamon) for a soft, soothing
scent.
$18.50 - public price ($15 for ICN subscribers)
Officially called "coccyx cushions," these cushions have made sitting (at
work, in the car, at home, in front of the computer) for many IC patients
much easier. Due to the flexible groove down the middle, they dramatically
reduce pressure on the urethra, vulva and the sensitive perineal region.
The cushions are 14" wide by 15" long. Inside, you'll find firm,
supportive side sections with a flexible, soft, grooved foam center. The
pads are covered with a dark blue durable poly-cotton. Manufacturer:
Dynatronics
$22.00 - public price ($18.50 for ICN subscribers)
Saratoga Pro Tens unit requires prescription for purchase by US residents.
Read more about these at:
http://www.ic-network.com/marketplace/2000_tens.html
The Interstitial Cystitis Survival Guide by R. Moldwin (2000)
$14.95 - public price ($12 for ICN subscribers)
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A Taste of the Good Life: A Cookbook for an IC Diet by B. Laumann (1998)
$24.00 - public price ($20 for ICN subscribers)
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Breaking the Bonds of IBS by Barbara Bolen, Ph.D. (2000)
$14.95 - public price ($12 for ICN subscribers)
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The Chronic Pain Control Workbook by Catalano & Hardin (1996)
$18.95 - public price ($15.15 for ICN subscribers)
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Relaxation & Stress Reduction Workbook, 5th ed. (2000)
$19.95 - public price ($16 for ICN subscribers)
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The Daily Relaxer by M. McKay, Ph.D. & P. Fanning (1997)
$12.95 - public price ($10.30 for ICN subscribers)
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Healing Fear by Edmund J. Bourne, Ph.D. (1998)
$16.95 - public price ($13.50 for ICN subscribers)
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Perimenopause by Huston, M.D. & Lanka, M.D. (1997)
$16.95 - public price ($13.50 for ICN subscribers)
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Illness and the Art of Creative Self Expression-Stories and exercises from
the arts for those with chronic illness. by John Graham-Pole, MD (2000)
$13.95- public price ($11.25 for ICN subscribers)
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Thriving with Your Autoimmune Disorder - A Woman's Mind-Body Guide by
Simone Ravicz, Ph.D., M.B.A.(2000)
$16.95 - public price ($13.50 for ICN subscribers)
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The Loneliness Workbook by Edmund J. Bourne, Ph.D. (2000)
$14.95 - public price ($12 for ICN subscribers)
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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 Marketplace. Rather than ask for a membership fee up front to receive this
newsletter, 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've helped you, please consider supporting our work by becoming an ICN subscriber.
Subscriptions Available Here
**************************************************
Interstitial Cystitis Network
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Santa Rosa, CA 95409
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(707)538-9444 - FAX
E-mail: jill@ic-network.com