Interstitial Cystitis Newsletter
June 15, 2001
An AUA Conference Double Issue - We’re delighted to share with you a special double
issue of the ICN Newsletter. We decided to hold off publication last month so that we
could provide several reports from last weeks American Urology Association conference,
including the 19 new IC research studies presented. We're also delighted to announce
that C. Lowell Parsons MD, will be our guest speaker this month. Read more about this
below! We hope that you enjoy this expanded edition. As always, if you have
suggestions for guest speakers and new IC stories, please contact us.
In this issue:
(1) ICN "Meet the IC Expert" Chat Tuesday Night
One of the most accomplished IC researchers in the USA, he has conducted a wide
variety of clinical studies on the use of Elmiron. For the fourth year running, Dr. Parsons
has taught the course on Interstitial Cystitis at the American Urology Association
conference, where he has trained thousands of physicians in the latest IC research and
treatment protocols. He has strong views on IC, the use of Elmiron, the Potassium
Sensitivity test and the long term care of patients. Join us for this very special event!
When: Tuesday, June 26, 2001, 6PM PST 9PM EST
As usual, we always welcome questions submitted in advance for our guest presenters.
Please send them to: jill@ic-network.com
(2) The ICN Attends the AUA 2001 – IC Research Update
We’ve included links to the actual abstracts presented at the conference. Please note,
though, that those will be relocated next week to the new
Chronic Prostatitis website.
One of the most anticipated was the "Randomized, Double-Blind, Dose-Ranging Study of
Pentosan Polysulfate Sodium for IC." (Poster Session #273) The research was performed
by the national Elmiron Study Group (at several research centers around the USA &
Canada) and assessed the effectiveness of three doses of Elmiron (300, 600 & 900 mg).
Their conclusion was that NO significant difference in efficacy between dosages was
seen. Duration of therapy appears to be more important than dosage.
The latest study on CystaQ - Treatment of Interstitial Cystitis with A Quercetin (Poster Session
#274) - was released and generated significant interest among the participating
doctors. Their results suggest that therapy with CystaQ is well tolerated and provides a
significant symptomatic improvement in patients with IC. Congratulations to Dan
Shoskes, MD, and team!
Parents of children with IC will find hope in the study released by George Schuster, MD.
“Interstitial Cystitis As A Cause of Voiding Dysfunction in Children (#272)” addressed
the issue of whether children can/should be diagnosed with IC. The original diagnostic
criteria for IC developed by the NIDDK specifically excluded children under the age of
18. Yet, children often present with similar symptoms of IC, specifically frequency,
urgency and pain. Dr. Schuster adapted the NIDDK criteria to apply to children and then
tested to see its applicability. His conclusion – “IC may be a more common cause of
voiding dysfunction in children and may not be as ‘rare’ as the literature would suggest.”
The usefulness of the Potassium Sensitivity Test (KCL) in diagnosing IC was challenged
by researchers from Canada. “Assessment of Potassium Chloride Test in Comparison
with Symptomatology, Cystoscopic Findings and Bladder Biopsy in the Diagnosis of IC
(#276)" concluded that the KCL test was not useful as a diagnostic test for IC. This
result was, however, challenged by other researchers on the floor.
Researchers from Austria presented a study suggesting that saline could be an
alternative to the KCL test. (Abstract not available).
"Sacral Nerve Stimulation in Patients with IC: A Multi-Center Clinical Trial (#281)”
tested the clinical usefulness of sacral neuromodulation in IC. A small study of 22
patients, it found that nerve root stimulation provided a significant decrease in urinary
frequency and pain during the trial phase. 14 patients were considered candidates for
permanent surgery. It cautions, however, that this response to test stimulation does
NOT predict implant success.
For patients who wonder if anyone is looking for new IC treatments, a study from Japan
will reassure you that researchers are seeking new, innovative ways for treating IC.
“Reduction in Bladder Platelet-Derived Endothelial Cell Growth Factor/Thymidine
Phosphorylase During the Oral Treatment of IC Using IPD-1151T (Suplatast Tosilate)”
Researchers from England released their study of the use of SANS, the Stoller Afferent
Nerve Stimulator. Again, a small but hopeful study found that patients responded well to
treatment, with a reduction of pain, urgency, nocturia and frequency. They conclude
that “SANS is a promising addition to the treatment options for IC and may be used in
conjunction with standard medical treatment or alone.” SANS, as yet, is still unavailable
in the USA due to the demise of Urosurge. However, another company has expressed
interested in buying the technology for distribution in the US. When we hear the news,
we’ll let you know!
ICN Guest Lecture featuring Marshall Stoller:
SANS - Stoller Afferent Nerve Stimulation for Frequency, Urgency and Incontinence
J. Curtis Nickel, MD, discussed yet another promising study “Alkalinized Intravesical
Lidocaine To Treat IC: Absorption Kinetics in Normal & IC Bladders (#288).
Though several other studies were also presented, we end this discussion with an
abstract likely to cause some controversy. Researchers from Nashville TN presented
“Potential Role of Chlamydia Pneumonia in the Pathogenesis of IC (#277).” The role of
infection in IC continues to be hotly debated. Gregory Albert & team suggest that C.
pneumoniae, more commonly associated with air-borne, respiratory infections, could be
involved in IC. Seventeen patients with IC underwent bladder biopsy. Of patients with
IC, 82% had tissue cultures positive for C. pneumoniae. What this means AND how
specifically this is involved IC requires MUCH further study. I personally asked the
presenter how he correlated his study with other studies that didn’ have the same
results. He was uncertain. It is clear that much more study is needed. This should not
be considered an endorsement of antibiotic therapy in any way, shape or form.
Other AUA IC & Prostatitis abstracts
Other Conference Notes:
(3) On Course For Bladder Health Campaign is launched
On June 5, 2001, three professional golfers (Terry-Jo Myers, Dottie Pepper & Bruce
Devlin) joined forces to help raise visibility for interstitial cystitis and overactive bladder.
We had the pleasure of meeting Terry-Jo at the conference and she is a delightful
person. You would never know that she struggled with serious IC for so many years. In
this new campaign, the golfers will meet with physicians around the country to spread
the word. Devlin and Myers will also host two town meetings (Augusta, GA and
Scottsdale, AZ) to discuss IC. Sponsored by AFUD, the LPGA, & Alza, exhibits for the
campaign will also be set up at the McDonald’s LPGA Championship in Wilmington, Del,
the Asahi Ryokuken Augusta Int’l Championship in Augusta, GA and the Williams
Championship in Tulsa, OK.
The “On Course for Bladder Health” program provides educational materials to patients
and physicians nationwide. The campaign has also established a toll-free, confidential
hotline, 1-877-ON-COURSE, and Web site, www.bladderhealth.net, where people can
obtain information, as well as available treatment options for overactive bladder and IC.
To learn more about the campaign, and Terry-Jo’s work on behalf of IC patients, please
visit their web site! We’ll be distributing their newsletter with upcoming ICN book &
subscription orders. Support groups who would like copies should contact Jill for more
info.
(4) AUA 2001 - Italian Company May Revolutionize Bladder & IC Treatments
Wouldn't it be great if antibiotics could be delivered deep into the bladder wall for
patients who have long term, chronic infections? If the bladder could be anesthetized
locally so that patients could have a pain free hydrodistention in the doctor’s office? To
put a bladder coating directly where it is needed the most? This special ICN feature
discusses new technology (EMDA) produced by Physion and currently waiting for FDA
approval. This article also includes an interview with Robert Stephens, MD, who talks
about their VERY early studies with IC patients.
(5) EAU 2001 – A Conference Report from the IICPN
Jane Meiljink, chairman of the Dutch ICP, offered a report on this Spring’s European
Association of Urology conference. IC was the new hot topic of the conference with
physicians from around the world asking for information on diagnosis, treatment and new
patient resources. In addition to a presentation on IC by Magnus Fall, MD (a well known
Swedish IC researcher), several interesting research studies were presented. Most
encouraging, though, was the reaction of physicians attending the event. Jane reports
“We had never in our wildest dreams anticipated that there would be such a huge surge
of interest in IC on the part of urologists worldwide… Doctors crowded round our booth,
day in, day out, seeking detailed information on diagnosis and treatment, and all
wanting to set up their own patient support group, from Taiwan to Argentina. Our
leaflets, booklets and articles flew off the booth.” Read Jane’s full report on the IICPN
web site above!
(6) IPPS 2001 –International Pelvic Pain Society Meeting
Earlier this Spring, The International Pelvic Pain Society, in conjunction with the
American Pain Society, sponsored symposium on pelvic pain. The agenda included
presentations on the physiology & pathways of pelvic pain, and possible of mechanisms
of action for related pain syndromes, such as IC, Vulvodynia, IBS, Fibromyalgia &
Chronic Pain.
Of special note was the contribution by Dr. Dan Brookoff (Memphis, TN), who penned
two wonderful chapters on Chronic Pelvic Pain. The first, “Chronic Pain: A New Disease”
(Hospital Practice, July 15, 2000) makes the argument that chronic pain can lead to
specific, physiological changes in the nervous system. Some nerves can become so
chemically sensitized to persistent pain that a “low intensity stimulus” will provoke an
intense response. Normally quiet nerves can become activated. When this happens,
even the slightest movement or pressure can generate pain. This is called allodynia and
is common in severe IC and IBS. Patients interested in the actual (and very complex)
physiology of pelvic pain must read this article if you can find it in your local medical
library.
The second, “Chronic Pain; The Case for Opioids” (Hospital Practice, September 15,
2000), discusses the history of opioid therapy and the important difference between
short term and long acting (sustained release) drugs and drug selection. He reviews, in
depth, the appropriate use of various opiates, including morphine, fentanyl, oxycodone,
hydromorphone, methadone & levorphanol, in fighting pain. He also discusses side
effects, titration, tolerance, dependence and addiction (“the most important predictor
of addiction is previous substance abuse.”
Highly regarded by the IC community, Dr. Brookoff is an excellent ambassador for the
compassionate treatment of IC and pelvic pain. To other physicians, he asks “When a
patient in chronic pain seeks our help, the first question we should ask ourselves is not
whether we should provide an analgesic but whether we can, in good conscience, leave
that person in pain.”
If you are a patient needing help with pain management, another good resource is the
IC Survival Guide by Robert Moldwin, which also has an excellent discussion of pain
management strategies. It is currently $14.95 ($12.00 for ICN subscribers) and available
in the ICN Marketplace. We give it our highest rating! 5 stars!
(7) Q&A with Dr. Jay
Dr. Jay Burstein has provided yet another wonderful series of answers to questions
submitted by ICN users. We’ve included five of the 15 questions from this latest column.
You can read them all on our site at the link above.
Question 147: I have a severe case of IC and I have been told by one urologist that I
need to have my bladder removed. I went for a second opinion, and the urologist said
that although my surgery report stated that my bladder can hold only 150 cc and I void
30 to 35 times a day, that I should not have my bladder removed, as my pain comes
from the base of the bladder and therefore my pain will not go away. I have taken
Elmiron (up to 6 tablets per day), but my current urologist took me off of them since it
was not helping. I was tested for an interstim implant last May and I could not even get
the stimulator up to number 1 without having pain. My urologist is now suggesting that I
go to the pain clinic and see if I could have the pain clinic prescribe a patch that has
the drug Fentanyl in it. He thinks that along with this patch and still be on all of the
medications that I am presently taking, that this would help level my pain. I want to
know if you have had any IC patients who have had relief from pain.
Answer: Hang in there! Surgery to remove your bladder should be treatment of last
resort. Try all other options and combinations of treatments, including: bladder
coatings, antihistamines - such as hydroxyzine, antidepressants to help with pain
management & perhaps even pelvic floor work. Continue your relationship with the pain
clinic! Newer approaches to pain management have provided significant relief for many
of my patients. One resource that you should take advantage of is “The IC Survival
Guide” written by Robert Moldwin, MD. It has an excellent discussion of all treatment
options available for IC, as well as a section on pain management. Your doctor may
have this. It’s also available for sale through the ICN.
Question 148: I am 21 years old and for 5 months now I have had persistent urinary
discomfort. I am a frequent user of over the counter medications such as URISTAT and
AZO. For example, I will get the painful urge to urinate and will be relieved with the
URISTAT and the whole thing is gone and sometimes I can go weeks without seeing it
again. At times, I will just get it for a couple days in a row. What is this? Should I see a
doctor?
Answer: Azo And Uristat contains phenazopyridine, which acts as a topical analgesic on
the lining of the bladder. In technical terms it is an AZO DYE and will color the urine an
orange- reddish tint. Long-term use is NOT recommended by the manufacturers and can
result in yellowish discoloration of the skin and white part of the eye. (Contact lenses
can also become discolored). Listed adverse reactions include headache, rash itching,
Gastro-intestinal disturbance and anemia. Care must be taken when using this class of
medication because these products only relieve pain, they do not treat the cause of
disease. If your symptoms continue to persist, be sure to see a doctor. You may be
suffering from recurrent infection.
Question 149: Would a general cystoscopy, not under anesthesia, look normal to a
urologist, or would there be any indication of IC even then?
Answer: In order to produce glomerulations, the “tell-tale” sign of IC, the bladder has to
be distended past normal capacity. This over distention causes severe pain and requires
the use of general or spinal anesthesia. You are correct. If IC were present the bladder
would appear normal during cystoscopy without anesthesia.
Question 150: I've recently heard that mannose might be helpful in treating IC. Can you
help me find any research to that effect? Thank you.
Answer: Mannose is a sugar obtained from various plant sources. It may be useful in
some cases of urinary tract infection caused by the bacteria E. Coli because it prevents
a subtype of this bacterium from sticking to the bladder wall. To my knowledge, it is not
effective in relieving symptoms of IC.
Question 151: Could untreated strep throat lead to IC?
Answer: There has not been any documentation of streptococcus as a cause of IC.
Question 152: My daughter is only 12 yrs. old. She is on her 7th uti since Nov. - She
has been in frequent pain off and on and is a little better being on detrol and
macrodantin for uti. She has had bacteria - e-coli, enteroccocus and now staph in her
urine culture (at different times). She continues to get this pain and an infection
despite being on preventative bactrim or macrodantin. We are very confused. She has
had an ultrasound and a cystoscopy done. She has a thickened bladder wall and debris
in her bladder. She also leaks all over her bed every night. She has terrible bladder pain
and/or vulva pain sometimes. I was wondering if you could offer any idea as to what is
going on with her.
Answer: Your daughter apparently suffers from recurrent urinary tract infections likely
made worse from dysfunctional voiding. This is a common problem in some children and
needs to be evaluated by a pediatric urologist. Needless to say she may also have
associated pathology such as IC or vulvitis. Be sure to have her seen by a pediatric
urology specialist.
The other topics covered in this issue include:
(8) Guest Lecture Transcript Now Available
The ICN has hosted more than 33 guest lectures featuring the nations leading IC
urologists, researchers & activists. Our most recent lecture transcript featuring Dr.
David Kaufman is now available for your review. David Kaufman first came to national IC
fame when he was featured in a groundbreaking article on IC "Firewater" which
appeared in Self Magazine. He currently serves on the Medical Advisory Boards of the
ICA & Alza Corporation. In this riveting presentation, Dr. Kaufman shares his insight into
pelvic floor therapies and the use of Heller therapies. It's a fascinating journey! All
transcripts are free and currently available for your review.
(9) Fresh Tastes by Bev –
Though canned soups are quick to fix all the popular brands are a minefield of additives.
Organic pea soup (made by Amy's Kitchen) is available at Whole Foods Markets (a
national chain check your local phone book). It's free of preservatives, hydrolyzed
proteins and protein isolates that can trigger bladder pain. Best of all, for those with IBS
who are sensitive to gas-forming foods, this manufacturer appears to have mercifully
made the product the old-fashioned way. Even if most canned pea soups cause horrible
gas and flare up your IBS, this one may be tolerable.
Can't find good canned soup that your bladder likes too? Homemade soups are so much
tastier anyway and this month's feature is a healthful and easy to make light meal.
Mild Bean, Barley and Lentil Soup
Oh soup, how do I love thee? Let me count the ways: First, and most importantly of
course, I can count on this basic mild recipe to not upset my finicky bladder on stressful
days! It's flavorful, low-fat, and protein-packed too. It freezes well and it's just the
thing to heat up for a light summer dinner when I don't want to heat up the kitchen.
Best of all, my husband really enjoys it. (No cooking one recipe for him and another for
me just because my bladder is flaring!)
Then too, if my bladder decides to behave for awhile or I'm expecting company for
dinner, this soup is so versatile that I can give it real pizzaz by simply adding a few
more ingredients. But wait! There's more: I can make a large batch and refrigerate
portions for use the next day or two what a time saver for an activity packed summer!
Friends and relatives with special diets can eat it too. This recipe's got vegetarian,
low-sodium, or low-oxalate variations to please just about everyone, so enjoy!
2/3 cup dry lentils
Cover dry beans, barley and lentils with at least two inches of water in a large pot. Let
soak for 6 to 8 hours (overnight, while you do Saturday morning chores, or while you
are at work). Pour off the soak water and rinse with fresh water. Drain, then add 2-1/2
cups of water and the 2 cups of broth to the beans. Cover and bring to a boil.
Meanwhile, trim fat off the pork chops and cut in chunks. Then brown the pork in a
skillet with a little vegetable oil. Add browned pork, carrots, celery, marjoram, fennel
seed, and onion salt to the boiling pot of beans. Cover and let boil about 2 minutes. (At
this point you can take it off the stove, refrigerate, and continue cooking later in the
day.)
Reduce heat, cover, and gently simmer for 3 hours. With back of a spoon, stir and crush
a few lentils to make a creamier consistency. (Serves 4)
Soup Variations
* Low-oxalate: You may want to avoid the oxalates in celery. Try using broccoli
instead.
* Vegetarian: Natural food stores sell a variety of vegetable broths that can substitute
for the chicken broth. But be careful about adding tofu or other vegetable-based meat
substitutes. The protein in them has been hydrolyzed and as a result they often contain
quite a bit of pain provoking glutamates.
* Low-sodium: Health Valley makes a low sodium version of their MSG-free chicken
broth. Also, substitute 1/2 to 1 teaspoon of onion flakes or 1/4 cup chopped fresh
chives for the onion salt.
Serving suggestion: Warmed bread is great with just about any soup. My local Trader
Joe's store carries a wonderful wheat and potato flour bread I enjoy (Trader Joe's brand
Shepherd Bread). Trader Joe's is a national chain, so check your phone book for local
stores. The only drawback to this preservative-free bread is that in the warm weather
it molds quickly. One solution for small families is to keep the loaf in the freezer and only
take out slices as they are needed. Slices defrost in about 10 or 15 minutes when left
on the kitchen counter).
Review her other new column on “Shrimp & Prawns” on our web site!
(10) IC Lifestyles by Gaye & Andrew Sandler
This hard working IC couple brings wisdom to the daily lives of IC patients. Authors of
the latest book on IC “Patient to Patient: Managing IC and Related Conditions,” their
monthly column offers practical and comfortable ideas for living. Their most recent
column, written by Andrew, brings up the perfect summer topic… “How to Travel with
an IC Patient,” written from a spouse’s perspective. Don’t forget to try their exercise of
the month!
TAKING A TRIP (FROM A SPOUSE PERSPECTIVE) - Andrew Sandler, Ph.D.
Travel can be
a challenging task for IC patients. There have been several instances
over the years when my wife and I have had to shorten, modify, or
even cancel travel plans because of this disease. We never know what
obstacles we will face once we leave our home, however we know the
obvious ones. My wife Gaye was
diagnosed with IC two months before our wedding. During that time
I was finishing my dissertation on learning disabilities. I began
to see how my training might apply to modifying our lifestyle to IC.
For example, many of the learning disabled individuals I helped had
trouble following directions to a job interview. So, I would suggest
that they drive to the location of the interview the day before in
order to reduce their stress. The same technique has helped us, except
instead of not knowing how to get somewhere, we take trial runs to
learn where bathrooms are located.
Sometimes I'm
a little hard on Gaye before a trip. I remind her not to cheat on
her diet, because I want her to be well. Even on a trip I can be confronting
when I don't want her to hurt herself with the wrong foods or activities.
I even make her mad at times, and I know that I am being a bit selfish
because when she is in a flare-up our plans have to change.
Although I consider
myself an old pro at traveling with a person with IC, I still feel
resentful at times when trips do not turn out as I had hoped. I try
to deal with these negative feelings by learning to be realistic,
especially about my expectations. I do not build up high hopes about
anything. Then, if things work out, I am pleasantly surprised.
At first, like
other couples, my wife and I learned to travel the difficult way -
through trial and error. As time has passed we have learned to anticipate
problems and plan accordingly. I would like to share some of things
we think about as we plan a trip:
1. Feeling
in control - Schedule trips when your partner is strongest.
This may mean avoiding times of the month when IC symptoms have
a chance of flaring, or it may mean avoiding trips during certain
seasons that bring allergies. Try to keep the length of trips reasonable.
Taking several three-day trips in a year, instead of one seven-day
trip, may be more manageable.<
2. Psychological Security - I know that this is obvious,
however we have found that it is necessary to know where bathrooms
are located where we live and when we travel. We often will not
drive on a freeway if there is the possibility of a traffic jam
or a lack of bathrooms (rest stops and fast food restaurants) along
the route, even if it will take longer.
3. Flying - The unpredictability of airport and airline food
can be problematic. Many IC patients find it helpful to fly in the
late afternoon or early evening so that they can have a good/bladder-safe
breakfast and lunch prior to the flight (the bladder is most active
in the morning and early afternoon). It is always a good idea to
bring food on the plane and sit in the isle seat so not to disturb
other passengers during frequent trips to the bathroom.
4. Environmental Sensitivities - My wife's chemical sensitivities
put her at risk when she leaves the safety of her home. We always
reserve or ask for a non-smoking room and a room that has not been
recently painted or cleaned with air fresheners, scents, sprays,
or ozone machines. We put scented soaps etc. in drawers and bring
our own pillow and pillow cases.
I have found that my wife's chemical sensitivities have been more
problematic during travel than her bladder. There have been several
instances in which we have had to be assertive with hotel managers
and ask to switch rooms because of fumes. We have even had to leave
one hotel and go to a more expensive one in order to meet our special
needs. Although I did not like spending additional money, it was
one of the best investments that I have made because the rest of
the trip was a big success!
5. Staying with other people - Family members and friends, however
well-meaning, often do not understand the unique problems of the
IC patient. The same chemical sensitivity issues that can come up
in a hotel can also apply to others' homes. Feelings can be hurt
when problems such as midlew or scents are pointed out. Sharing
a bathroom is also not ideal, nor is sharing food. The IC patient
can go hungry if the dinner prepared is not bladder-safe.
We often choose to stay in a hotel and rent a car, instead of staying in the homes
of friends or family members and depending on rides. The privacy
of a hotel room helps my wife rest and pace herself during a trip.
Some hotel rooms also have kitchens. This can very helpful when
restaurant availability and food are a problem. Having a car enables
us to find a variety of restaurants, or go to a grocery.
One has to always consider the possibility that friends and family
members will feel offended if the IC patient stays in a hotel. However,
relationships with these people can also become strained when IC
becomes an issue in their homes. Quality of time is often more important
than the quantity of time you spend with others!
6. Driving in a car - We always make other people aware of
the problems (i.e., need for frequent bathroom stops and dietary
requirements) associated with IC prior to taking a road trip with
them. We will not travel with those who are not accepting of this
disease. We usually bring an ice-pack in a cooler, as well as a
portable potty or a bag full of towels (as suggested by Jill Osborne)
that can be used to cover up with, void into, and clean-up
7. Packing - My wife always brings her medication and doctor's
phone number. We have found that it is better to bring too many
things, instead of not enough, in case of emergencies.
8. Physical Stress - Travel can be physically compromising.
Sitting in one position for too long in new environments, such as
cars or airplanes, standing in lines, lifting and carrying bags,
even when they are light, can affect muscles and posture, and result
in pain. Daily stretching is essential.
Review their exercise of the month & other new column on “Summer Shoes” on our web
site!
(11) Feature Story of the Month
WATER – DRINK TO YOUR HEALTH
Are you suffering from:
Maybe you're not drinking enough water.
Doctors and nutritionists are starting to suspect that dehydration plays a major role in
many physical complaints. Many people don’t realize they’re not drinking enough water
because they don’t feel thirsty. But lack of thirst is actually a signal that you’re
dehydrated. Dry mouth is an SOS signal that your body is in the late stages of severe
dehydration. When the body is properly hydrated, your normal thirst mechanism kicks in
and you start to feel thirsty again when you need more water.
WHY WE NEED WATER
HOW MUCH TO DRINK
Nutritionists recommend that overweight people drink an extra eight ounces for each 25
pounds of excess body weight. When people don’t drink enough water, their kidneys
can’t flush all toxins from the body, causing the liver to come to the kidneys’ aid. This
detracts from the liver’s primary function of helping to digest fat and other nutrients.
Thus, staying well-hydrated allows the body to metabolize fat more efficiently. Water
also helps overweight people feel more full and therefore eat less.
SOME BEVERAGES DON’T COUNT
WHAT HAPPENS TO ALL THAT WATER?
Urination and bowel movements account for the rest of daily water loss. Constipation is
almost always the result of dehydration. Drinking plenty of water eliminates the need for
laxatives. A recent study also showed good hydration to greatly reduce a person’s risk
of developing colon cancer. Some people worry that a sharp increase in water intake
will cause too many trips to the bathroom, but the bladder tends to adjust after a few
weeks, reducing the initial need for frequent urination.
Urine that’s clear or very light yellow indicates that your body is well hydrated.
Athletes, of course, lose more water through perspiration and respiration and therefore
need more water. Some Olympic team doctors tell athletes that if their urine is golden,
their medal won’t be. Doctors remind athletes that the muscles, lungs, and heart all
depend on proper fluid levels to function at peak efficiency.
TREATING YOUR OWN WATER
Common treatment systems include:
IS BOTTLED BETTER?
Between 1996 and 1999, the nonprofit Natural Resources Defense Council (NRDC)
analyzed 103 brands of bottled water. Of those brands, one dozen exceeded federal,
state, or industry guidelines for chemicals, minerals (such as arsenic), or other
contaminants. The NRDC recommends choosing water that’s bottled by members of the
International Bottled Water Association (IBWA). These companies open their plants to
unannounced inspections by an independent,
internationally recognized third-party organization. The inspection ensures that IBWA
members meet all federal, state, and IBWA requirements for the production and sale of
bottled water. For more information about IBWA members, view the group’s website,
www.bottledwater.org.
Copyright 2001 – Health Plan of the Redwoods
When a patient considers sacral nerve stimulation as an option for treating IC, they are
often overwhelmed by questions and worries. Is it successful? Are there side effects? If
it works, how do I maintain it? If it doesn't work, what other options do I have. During
Winter 2001, ICN Founder Jill Osborne met with Medtronic's Ben Wasscher and Janell
Gottesman to develop a new orientation checklist for patients to help answer these
questions. We hope that you can use this checklist to gather all the necessary
information before you undergo any nerve stimulation procedure. Please remember that
nerve stimulation is not specifically FDA approved for IC and it should only be attempted
after other less invasive strategies have been tried.
(13) Interstim Safety Alert – Diathermy Contraindication
Medtronic’s web site includes a new safety warning for Interstim patients. For interstim
patients, they suggest that you inform anyone treating you that you CANNOT have any
short-wave diathermy, microwave diathermy or therapeutic ultrasound diathermy (all
now referred to as diathermy) anywhere on your body because you have an implanted
neurostimulation system. Energy from diathermy can be transferred through your
implanted system, can cause tissue damage and can result in severe injury or death.
Diathermy can also damage parts of your neurostimulation system. This can result in
loss of therapy from your neurostimulation system, and may require additional surgery to
remove or replace parts of your implanted device. Injury or damage can occur during
diathermy treatment whether your neurostimulation system is turned “on” or “off.”
(14) New Urology Supplement on IC
The ICA-US recently announced their sponsorship of a new, special supplement to the
medical journal, Urology. Co-edited by Grannum Sant, MD, Philip Hanno, MD, Alan Wein,
MD and Vicki Ratner, MD, “Interstitial Cystitis 2001: An Evolving Clinical Syndrome,”
shares the latest research on interstitial cystitis (IC), including, according to the ICA
web site, “articles on a potential new test for IC, the first-ever published research on
the genetics of IC, IC in men, progress in clinical IC research, and basic IC science.”
Though we have not seen a copy of this current supplement, a previous edition on IC
was outstanding. IC patients interested in studying research and looking for an
advanced academic discussion should find this helpful. It is available for purchase
through the ICA. Well done ICA!
(15) IC Clinical Research Study Using a Hyaluronate Solution (similar to Cystistat)
SEIKAGAKU Corporation is conducting a USA based double-blind, placebo-controlled
multicenter clinical study evaluating the safety and effectiveness of a sodium
hyaluronate solution (SI-7201) when compared to placebo for the treatment of
interstitial cystitis (IC). Similar to Cystistat (Bioniche, Canada), this drug presents a
possible new option for patients looking for new bladder coatings. The purpose of this
study is to investigate the safety and effectiveness of 50mL of Sodium Hyaluronate
(SH) solution (SI-7201), when infused into the bladder through a catheter, to treat the
symptoms of IC. For further information and a list of participating IC research centers,
visit the link above.
(16) Lesa’s Pregnancy Journal – Three Weeks & Counting
For those of you following the miracle of Lesa’s pregnancy, you’ll be excited to know
that she is just 3 weeks away from her due date and ready! She reports that she’s
excited, that the baby has dropped and the doctors think it could be anytime now. Let’s
send our best wishes to Lesa. She’s give us all a wonderful gift through her pregnancy
journal that will inspire patients for years to come. As soon as we hear anything, we’ll
let you know.
(17) Welcome to the many new IC support groups in the US
Earlier this year, the ICA ceased funding their patient support groups around the
country. While many group leaders have sadly given up their support activities, a
growing number are continuing independent groups. California leads way with six IC
groups across the state.
We’d like to offer a big ICN welcome to two newly listed groups! The San Diego IC
support group, under the new leadership of Jane Caldwell, Donna Hahn, and Kevin
Russell, will meet this July. Patients in the State of Washington will have the chance to
participate in a group run by Sharon Gerde and Ron Hamblin beginning next September.
Arizona, Florida, Illinois, Indiana, Iowa, Kentucky, Michigan, New York, Ohio,
Pennsylvania, Tennessee, Texas, Vermont and Washington also have active groups
and/or volunteers who are starting groups.
If you are looking for a local IC support group, or would like to have your group listed,
please visit the link above. Support groups are welcome to post meeting
announcements on our web site and in our message boards for their specific regions! If
you have a group to be listed, please send an e-mail to: jill@sonic.net
(18) Web Sites Worth Watching
International Volunteers in Urology, Inc- A group of urology
care providers who travel the word to perform vital surgery. Reading the trip journals on
this site is amazing. Imagine being an IC patient in a country with no urologists, no
treatments and no basic knowledge. Groups like this are so important and this could be
a good place to support financially if you donate to urology groups.
CPPS Website -(This site will be relocating to
www.chronicprostatitis.com in the next ten days)
Bandaids & Blackboards - A
website for children who are ill. Very nicely done!
HERS Foundation - A web site and international
women's health education organization that focuses on hysterectomy, its adverse
effects and alternative treatments.
ICN users know that one of the best pages to bookmark is our whatsnew page
(http://www.ic-network.com/whatsnew.html), where we post the latest additions to
our site. But, we also have a hidden gem. Near the top of the What’s New page is a link
to various health wire services, where you can read the latest mass media articles in
urology! We’ve just added three new services, including the wire service for New York
Times: Health, Healthscout.com, and Women.com. It’s worth a look every now and
then!
(19) ICN Newsletter Subscription & Un-subscription Info
Every time we send out a newsletter, we receive several requests to change email
addresses of our users. We have a special web page set up so that you, at your own
convenience, can change your subscription info (i.e. email address) for this newsletter,
including to unsubscribe with an old address and subscribe with a new address. See the
link above for more info!
(20) Currently Available in the ICN Marketplace
Are you a newly diagnosed patient looking for the best IC books & materials? We’ve
prepared a kit of information for newbies that includes the first three books listed below,
as well as a video, transcripts and a variety of other materials. It’s only $49.00 for all,
saving $8.00 off the list price! Order it on-line today!
RECOMMENDED BOOKS
**************************************************
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.
http://www.ic-network.com/marketplace/2001_subscriptions.html
Jill Osborne, Founder
"I believe that people of gentleness and caring can change the world… one unseen,
unsung, unrewarded 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.
(1) Guest Speaker Alert – Dr. Lowell Parsons to speak on Tuesday, June 26, 2001
(2) AUA 2001 - ICN Attends AUA – IC Research Update
(3) AUA 2001 - On Course For Bladder Health Campaign Begins
(4) AUA 2001 – Italian Company May Revolutionize Bladder & IC Treatment
(5) EAU 2001 – A Conference Report from the IICPN
(6) IPPN 2001 – International Pelvic Pain Society Annual Meeting
(7) Q& A with Dr. Jay – 15 new questions & answers
(8) Chat Transcript Now Available – Dr. David Kaufman
(9) Fresh Tastes by Bev – May & June
(10) IC Lifestyles By Gaye & Andrew Sandler – May & June
(11) Special Feature Story – Water! Drink to Your Health
(12) Patient Orientation CheckList for Nerve Stimulation
(13) Medtronic Interstim Safety Alert – Diathermy Contraindication
(14) June 2001 Urology Supplement on IC
(15) IC Clinical Research Study Announced - SI-7201
(16) Lesa’s Pregnancy Journal – Three weeks & Counting!
(17) USA IC Support Group Listing – New groups added!
(18) Websites Worth Watching
(19) ICN Newsletter Subscription & Unsubscription Info
(20) Currently Available in the ICN Marketplace
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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. Join us Tuesday evening, June 26th for
a special chat with Dr. Lowell Parsons, one of the best-known IC physicians in the
world. Dr. Parsons has treated tens of thousands of IC patients in the past decade,
running one of the largest IC clinics in the world. A graduate of Yale University, where
he earned his MD, Dr. Parsons currently serves as a Professor of Surgery at the
University of California, San Diego.
Where: ICN Chat Central
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The Annual Meeting of the American Urology Association occurred Saturday, June 2-7,
2001, in Anaheim, California. The largest urology conference in the USA, nineteen new
research studies on IC were presented on Sunday morning, June 3, during the IC poster
sessions. What’s a poster session? New research is typically presented with the use
paper posters, placed on the walls of a conference room. The designated spokesperson
for that study stands by the poster and takes questions from the many doctors and
researchers who walk around the room. Towards the end of the session, the moderator
then invites the scientist to present their results to the whole room using a microphone.
Read the study press release at:
ICN News Room
Other Websites: CystaQ, The Use of Quercetin and CystaQ in Treating IC
Stoller's Afferent Nerve Stimulator For Interstitial Cystitis: Does It Work?
AUA press release
ICN Message Boards-ICN Announcements: June 2001
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"On Course For Bladder Health, Professional Golfers Drive Awareness On & Off The Links For Bladder Health
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Italian Company May Revolutionize
Bladder & IC Therapies
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International Interstitial Cystitis Patient Team: IC World News
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The International Pelvic Pain Society
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Ask The MD- May 2001
153: Urethral Syndrome, IC.
154: Can Synthroad irritate IC?
155: Does having IC affect fertility?
156: Is there a connection between Graves Disease and IC?
157: Can a new sexual partner cause IC?
158: Children and IC.
159: Diagnosing IC
160: Is IC and endometriosis related?
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Dr. David Kaufman: IC, PFD & Heller work
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Fresh
Tastes, September 1999, "Vitamin E and the IC Diet").
1/3 cup dry kidney beans
1 Tablespoon barley, hulled or pearled
2-1/2 cups water
2 cups Health Valley low-fat chicken broth
2 pork loin chops, trimmed and chopped in 3/4-inch chunks
vegetable oil
1/3 cup sliced carrots
2/3 cup sliced celery
1-1/2 teaspoon marjoram
1/2 teaspoon fennel seed
1 teaspoon onion salt
* Spice-it-up: Add black pepper to taste, 1/2 cup sauteed onions and 1/8 teaspoon
garlic powder. Throw in some cooked mild or spicy Italian sausage. (Even mild sausage
that lacks cayenne pepper tends to have some drawbacks for the IC patient: MSG,
benzoates, and paprika or worse yet, oleoresin paprika. If you have to avoid all those
ingredients but can have a bit of nitrates in the sausage, try Aidell's Chicken and Apple
sausage (Aidell's Sausage Company;). Or make a trip to your local
natural foods store. As your bladder improves with medical treatment you might find
that spicy is occasionally okay for you but preservatives
still bother your bladder. Check out Whole Foods, Wild Oats or Trader Joe's markets.
These stores sell preservative free Italian sausage).
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IC Lifestyle & Exercise
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Editors Note: We found this article in the Spring 2001 newsletter of Health Plan of the
Redwoods, an HMO based in Northern California. It was so good, we thought we’d share
it with you. Why water? It’s one thing that IC patients often struggle with. It’s fairly
common for IC patients to not drink enough, thus leading to constipation and
dehydration. This article, written for the general public, will give you some general
guidelines on appropriate water consumption – especially during these hot summer
months.
Written by: Constance Burtnett
* Lack of concentration?
* Constant fatigue?
* Fluid retention?
* Migraine headaches?
* Lower back pain or joint aches?
* Complications from allergies or asthma?
* Acid stomach or morning sickness?
Between 55% and 75% of an adult’s body weight is water (typically 10 to 12 gallons).
Brain tissue is 85% water, and our blood is 83% water. Many people are surprised to
learn that water comprises 73% of lean muscle, 25% of fat, and 22% of bone. Water
regulates body temperature, removes wastes and toxins, and cushions the joints. It
helps dissolve nutrients so they’re accessible to the body. And because proper
hydration increases blood volume, it also increases the amount of oxygen available to
brain cells, thereby helping our thinking processes.
Doctors recommend that inactive people drink 1/2 ounce of water daily for each pound
of body weight. In other words, a 160-pound person should drink 80 ounces of water
each day, which equals 10 eight-ounce glasses. Physically active people should drink
more. The recommendation for very active people is up to 2/3 ounce per pound of body
weight. People also need to drink more water during hot weather, particularly young
children and seniors.
Don’t count caffeinated beverages or alcohol toward your daily water total. Both
actually dehydrate your body and thus increase your need for water. Caffeinated
beverages and soda contain substances that tax the body more than cleanse it. Also,
juices contain a lot of sugar, so drink juice sparingly, and drink enough water to flush
the excess sugar quickly through your system. People also gain a certain amount of
liquid from food, perhaps four to five cups per day. But the amount is hard to gauge, so
nutritionists recommend not counting food liquids toward your daily total.
Adults lose nearly 12 cups of water per day. We lose between 1/2 cup and one cup of
water each day through the soles of our feet (which explains why socks smell bad).
Plus, we lose another two cups per day through other perspiration. The lungs use two
to four cups of water per day to aid the breathing process. When the lungs don’t get
enough water, the body produces more histamine, which forms mucus that can clog air
passages. That’s why it’s important for people with asthma or allergies to drink a lot of
water.
It’s important to make sure you’re drinking pure water, but it can be difficult to
determine which water is pure. While most municipal tap water in America is safe to
drink, many homes have unsafe levels of lead in the pipes. To play it safe, some people
like to take the extra measure of buying a water filter or distillation process for their
kitchen sinks.
a. Activated carbon filters remove organic contamination and pesticides but do not
remove inorganic chemicals and heavy metals like lead.
b. Ceramic filters remove harmful cryptosporidium and giardia organisms, along with rust
and dirt. Experts recommend having both activated carbon and ceramic filters operating
at the same time. It’s very important to change and clean these filters regularly,
though, so they don’t become breeding grounds for the very contaminants you’re trying
to remove.
c. Ultraviolet filters kill all microbes and organisms, including viruses. Many people
include a UV filter along with activated carbon and ceramic filters.
d. Distillation removes all heavy metals and contaminants and kills all bacteria and
viruses. This process is costly, though, and doctors worry that because it removes all
minerals from the water, drinking distilled water can leach minerals from our bodies.
While bottled water is regulated by the Food and Drug Administration, experts urge
caution in choosing the brand you drink. Bottles labeled simply “drinking water” or
“purified water” are probably tap water. If the water came right out of the tap without
any treatment, the label must disclose which municipality it came from. Most of these
brands are filtered or disinfected before bottling, however, so their labels need not
mention the water source.
Reprinted With Permission
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Interstim Questions- ICN Patient Handbook
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Interstim Diathermy Contraindication
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ICA: Special Announcement-Comprehensive New IC Resource
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Sodium Hyaluronate Tested in US Via Double Blind Placebo Control Study
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Lesa's Pregnancy Journal
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USA Support Group Listings
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We’re pleased to share the URL’s of sites that we think can be helpful. Here are a few
worth watching!
Interstitiell Cystit - A new resource for IC &
prostatitis patients in Swedish. Yes, it’s in Swedish!
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Medical Wire Service News
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ICN Mailing Lists & Newsletters
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ICN Marketplace
Patient to Patient: Managing IC and Related Conditions by Gaye & Andrew
Sandler (2001)
ICN Five Start Rating!
$18.50 – public price ($15.75 for ICN subscribers)
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The Interstitial Cystitis Survival Guide by R. Moldwin (2000)
ICN Five Star Rating!
$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)
ICN Five
Star Rating!
$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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Thriving with Your Autoimmune Disorder - A Woman's Mind-Body Guide by Samone Ravicz, Ph.D., M.B.A.(2000)
$16.95 - public price ($13.50 for ICN subscribers)
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Check out our new gift sets & kits for patients and newly reduced sale
items!
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RECOMMENDED HEATING PADS
Bodi Heat Adhesivable Heating Pads
$3.50/3 pack – public price ($3.00 for ICN subscribers)
Bladder Friendly Microwaveable Heating Pad
$18.50 – public price ($15.00 for ICN subscribers)
**************************************************
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