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- IN THIS ISSUE (October 2010): (View on the web)
- A Gift For Our Readers - ICN Medical Records File
- New Videos & Webcasts Worth Watching - WebMD - Dr. Niall Galloway
- ICN Feature Story - Would you choose a procedure that costs $1800 or $22,614 if they had similar results?
- The Latest Research
- New IC Cookbook Released - The Happy Bladder Cookbook by Mia Eliot
- Patient to Patient: Hot Topics in our Support Forum
- ICN Survey - Medical Marijuana and IC
- Consumer Alert - Fentanyl Patches Recalled
- Fresh Tastes by Bev - Fall Dinner Recipes
- Chef Daniel Norton Launches New Diet & Recipe Website
- Self Help Tip of the Month - Disposing of Unused & Expired Medications
- We're Looking for MD & PT Recommendations In Canada and USA
- IC Support Opportunities
- The ICN Shop - Finding Some Comfort In The Cold Days Of Fall
A Gift For Our Readers - Free ICN Medical Records File
Can you remember which tests you've had and what the results were?
Are you struggling to remember what medications you've tried and/or why you stopped them?
Are you getting the most of your appointments?
There's nothing worse than being asked by a new physician "What treatments did you try?" and you respond "I don't know." What? This is your body and you should know what treatments you've tried along with your testing history, unless, of course, you really want to undergo a second or third hydrodistention. Yikes! It's time to get organized!
In honor of IC Awareness Month, the ICN is happy to share with you our newly updated Medical Records File. With it you'll be able to plan your doctors appointments, record your test results, manage your treatments and track your progress, create a voiding diary and have an emergency plan should you ever need to visit the emergency room for your IC.
Download it now at: http://www.icawareness.org/medicalrecordsfile.pdf
New Videos & Webcasts Worth Watching
WebMD - America Asks About OAB
This is one of the best video series that we've seen for patients struggling with extreme frequency and urgency, also known as OAB. It provides information very relevant for IC patients.
Dr. Niall Galloway MD of the Emory Continence Center offers excellent insight into OAB and what patients often do that contribute to their bladder symptoms, particularly by eating foods which are well known to trigger urinary frequency and how we eat them. This is a lovely presentation, brief, direct and helpful!
ICN Feature Story - Would you choose a procedure that costs $1800 or $22,614 if they had similar results?
(By Jill Osborne MA - ICN President) In the1990's, urology researchers determined that if you delivered a mild electronic pulse to the nerves ennervating the bladder that it could reduce episodes of incontinence as well as some frequency or urgency. Developed by Richard Schmidt MD while he worked at UC-San Francisco, sacral nerve stimulation (SNS) involved the implantation of an electrical lead in the lower back and a battery device near the hip. Since 1997, numerous research studies have shown that this method can be successful but is fraught with numerous obstacles, including the cost of surgery, the risk of both mild and serious adverse events (18 fatalities were reported to the FDA in the past two years) and the need for constant medical supervision and/or multiple surgeries to maintain the implanted units.
At roughly the same time, another researcher at UCSF, Dr. Marshall Stoller, developed a non-invasive approach to nerve stimulation. Called post tibial nerve stimulation (PTNS) procedure, it involved the insertion of an acupuncture needle near the post-tibial nerve, slightly above the ankle bone. This nerve travels through the pelvis and down the leg. Research results were similarly favorable. The cost and risk of this procedure are far less, involving no need for surgery, few adverse events and much lower cost.
Yet, of the two, the surgical method became quite popular across the country due, in great part, to extensive marketing and financial resources offered by Medtronic. Sadly, the non-invasive PTNS technique and device was juggled between several companies that didn't have significant financial resources. The current version, known as Urgent PC, is being marketed by Uroplasty. Both have received FDA approval and will be covered by Medicare (PTNS coverage begins in 2011),
So the logical question to ask is "Will the cheaper, safer procedure replace the more extensive, risky method?" In the November issue of the Journal of Urology, Dr. Ragi Doggweiler reviews the pros and cons of both. Research studies show effectiveness with both methods in reducing symptoms. She compares costs with SNS, suggested to cost $22,614 with a cumulative cost of $27,357, while PTNS would cost $1800 for 12 sessions .(1)
One factor in support of neuromodulation is research released in 2008 that revealed that anticholinergic medications commonly prescribed for bladder symptoms may cause increasing cognitive decline in healthy, older people.(2) She offers "It does make sense to consider PTNS as a replacement for pharmacotherapy in patients on multiple medications to avoid accumulation and interactions. It would be easy to treat patients in assisted living or nursing homes with PTNS and avoid the side effects of anticholinergic medications. However, will it be a substitute for SNS? Time will show, given the economic implications, that PTNS will be considered a first line treatment and cases of treatment failure will undergo testing for SNS."
I agree. Before committing to a significant, expensive surgery, it makes sense to try the easier, less invasive and more short term therapy first.
I also must admit to some bias. In 1993, I was referred to UCSF by my urologist where I landed in Dr. Stoller's clinic in tears and desperate for relief. This simple, easy acupuncture needle technique worked for me. I had my first two hours without pain at week 4 and my first day without pain at week 8. In contrast, many of my friends who were Interstim patients had multiple, and often traumatic, SNS procedures.
Ultimately, the decision to undergo any form of neurostimulation requires careful research and, of course, a physician well experienced in the technique to be used. It's also important to talk with patients who have tried these therapies and learn what the experience was like and what challenges they faced, if any. You can meet others directly in the ICN Support Forum where you'll find four message boards dedicated to neurostimulation. The ICN also offers a Sacral Neuromodulation Checklist that can help guide you through the decision making process and talk with your doctor about the pros and cons.
(1) Doggweiler R. Will posterior tibial nerve stimulation replace sacral nerve root stimulation as the salvage management of drug resistant urinary urge incontinence? J Urol. 2010 Nov;184(5):1835-6. Epub 2010 Sep 17.
(2) Han et al. Cumulative Anticholinergic Exposure Is Associated with Poor Memory and Executive Function in Older Men. Journal of the American Geriatrics Society, 2008; 56 (12): 2203..
The Latest Research
Summer and Fall are slows season for the research community and we only have a few, minor studies to share with you. Don't forget that you can always visit the National Library of Medicine, aka pubmed.gov, to view the latest journal article abstracts on IC.
Is IC progressive?
Almost every newly diagnosed patient asks "will my IC get worse over time?" We have not one, but now two studies that demonstrate that IC patients tend to improve, rather than worsen, over time. The first study was part of the IC Database study (1993 to 1997) that followed 637 patients over time. Those results, at a median of 31 months, found "no evidence of significant long-term change in overall disease severity."
Dr. John Warren and colleagues at the University of Maryland, have released the results of their much more recent EPIC study (2004-2008) which reinforces the above study and should give you hope. They followed 312 women over four years, observing their symptoms and medication use. Unlike the ICDB study, the EPIC studied followed patients who were newly diagnosed. They found that "during the first three years of IC/PBS 58% to 74% of initially severe cases and 32 to 37% of moderate cases improved." While conducting studies of this type is exceptionally complex, the authors offer "our study suggests that in comtemporaneous patients with recent onset IC/PBS there is room for optimism."
Source: Warren J. A Prospective Early History of Incident IC/PBS. J Urol. 2010 Dec 2010; 184(2333-2338).
Other Studies of Interest
URS 2010 - Urotoday - Clinical phenotype progression in women with interstitial cystitis/painful bladder syndrome
Urotoday - Long-term results of intravesical hyaluronan therapy in bladder pain syndrome/interstitial cystitis
Urotoday - Minimum 6-year outcomes for interstitial cystitis treated with sacral neuromodulation
New IC Cookbook Released - The Happy Bladder Cookbook
Written by IC patient Mia Eliot in 2010, the Happy Bladder Cookbook offers 75+ flavorful and creative recipes that are compliant with the 2009 IC/PBS Diet Food List. If you're looking new fresh flavors, tastes and ideas to liven up your diet, this is a lovely addition to your IC cookbooks.
At 24 years of age, Mia has had her share of health challenges, including a diagnosis of IC in 2008. While she was struggling with her new diagnosis and losing her job, she went back to her old passion, cooking and, as she recently said, "I rediscovered just how much I love to cook." This cookbook shares some of her favorite recipes adapted to the IC friendly diet and represents her desire to turn lemons into lemonade.. well.. not actually lemonade since it's very bladder iirritating. The fact is that she is extremely positive and encouraging.
The book is available through the ICN Shop for just $9.99 as a downloadable PDF file! After you pay for it, you will receive a receipt by email that will include your download instructions. Enjoy!
Patient to Patient: Hot Topics In Our Support Forum
The ICN Support Forum has been the home of IC patient discussions on the web for more than a decade. With 40,0000 registered users, you'll find patients every day gathered to share their thoughts and ideas about IC. Guests can read all messages but you will need to register if you would like to respond or write your own postings.
This summer, the ICN hit 500,000 messages posted by IC patients about IC. This is quite an achievement. If you haven't visited before, the ICN Forum has more than 75 discussion areas dedicated to a wide variety of topics. Here are just a FEW of discussion areas. Please come visit us and join in the discussions!
Introduce Yourself and Share your Story |
Neuromodulation: Considering It? PMS, Perimenopause & Menopause |
ICN Survey Center - Medical Marijuana and IC
Medical marijuana is a difficult, politically sensitive subject. While research studies have shown that medical marijuana can be effective in reducing neuropathic pain and/or muscle tension disorders, it is still illegal for use in many states. Our goal is to collect some data that can help determine if medical marijuana is helpful or hurtful in the management of pelvic pain and IC symptoms. Your answers are entirely anonymous. We will not ask for any identifying information from you. We simply want to know what your experience is. We hope that the preliminary data gathered in this survey may be used to support a larger funded study into the use of medical marijuana for IC or pelvic pain symptoms. Click here to take survey
Consumer Alert - Fentanyl Patches Recalled
On October 21, 2010, Actavis Inc. announced a voluntary recall of 18 lots of Fentanyl Transdermal System 25 mcg/hour C-II patches manufactured for Actavis by Corium International in the United States. Actavis learned that one lot of the patches shipped to market that contained one patch that released its active ingredient faster than the approved specification in laboratory testing. An accelerated release of Fentanyl from a 25 mcg/hour patch can lead to adverse events for at-risk patients, including excessive sedation, respiratory depression, hypoventilation (slow breathing), and apnea (temporary suspension of breathing).
Fentanyl Transdermal System is indicated for the management of persistent, moderate to severe chronic pain that requires continuous, around-the-clock opioid administration for an extended period of time and cannot be managed by other means such as non-steroidal analgesics, opioid combination products, or immediate release opioids. It has been used by IC patients struggling with severe pain.
Learn more and review the lot numbers at: http://www.actavis.us/
Fresh Tastes by Bev - Fall Dinner Recipes
The author of A Taste of the Good Life: A Cookbook for an IC Diet, Bev Laumann has written dozens of articles in her Fresh Tastes by Bev ICN Column that will help you better manage your diet. She's currently working on the second edition of her book. In the meantime, we're sharing some of her best columns!
Fall Dinner Recipes: Squash That IC Diet Boredom
No doubt about it, eating the same old thing every day is boring, isn't it? Maybe that's why when we're bored, we're tempted to cheat on our diet. Doesn't a mango and chili pepper salsa sound good? Or that chocolate cake? We don't have to cheat on our diet or even book a fall vacation in the sunny tropics to break away from monotony at the dinner table. Right now there's a bountiful supply of autumn vegetables in the markets... and they can perk up our dinner menus as well as beautifully decorate our holiday tables.
Colorful squashes star in hearty casseroles, aromatic soups or decadent desserts. Acorn squash, pumpkins, spaghetti squashes and others are all good sources of fiber and vitamins too. A single serving of any of the squash recipes below will give you 70% or more of your daily requirement for vitamin A. Vitamin A helps your eyes see in the dark. It's also an important antioxidant that helps stave off the aging effects of free radicals. (I know I could sure do with a few less wrinkles...) More importantly for those of us with IC, an adequate supply of dietary vitamin A protects the body from infection and keeps tissues of the intestinal tract and bladder healthy. Served with home style breads, roasted meats, or as a stew ingredient, winter squashes create unending possibilities for delicious and nutritious cold-weather dinners.
Bell Pepper and Squash Casserole
Chef Daniel Norton Launches New Website
One of the newer faces to the IC movement is Chef Daniel Norton who began working last year to create flavorful recipes for IC patients using our bladder friendly foods. He has now launched a brand new website that will offer several new services including:
- A new monthly recipe delivery service - Chef Daniel will create new entrees, appetizers, side dishes and deserts daily
- A custom, personalized cookbook - Designed specifically for you, their cookbooks will utilize your favorite food dishes specially formulated with IC in mind.
- An IC Store - Featuring a variety of low acid foods and beverages!
Find it now at: http://www.interstitialcystitis.me/
Self-Help Tip of the Month - Disposing of Unused or Expired Medications
(by Jill Osborne MA) Last month, I took a long, hard look at the drawer where I keep my prescriptions, vitamins and supplements. I was surprised to see that more than half were long expired. There were several old prescriptions for antibiotics from past bladder and sinus infections. Others were medications that I had to stop using due to side effects. It was quite a stockpile and time for me to dispose of them.
Are medications dangerous to use after their expiration?
Yes, they can be. Just as certain foods deteriorate with time and/or exposure to extreme weather, medications can as well. While it might be tempting to hold on to a medication over time and to save money, most experts agree that it could be dangerous. When in doubt, talk with your pharmacist about the stability and shelf life of various medications.
How can we dispose of them?
With growing concern about water contamination, "flushing" medication down the toilet is no longer recommended. Check with your pharmacy to see if they have a medication disposal program. Walgreens, for example, offers a mail in program where you purchase a special bag and then mail the pills (not the bottles) to a disposal service.
If a disposal service is not available, the FDA suggests that you take the pills out of their original containers and mix it with a "undesirable substance" such as coffee grounds or used kitty litter in a water tight, sealable bag. The point is to make it less appealing to children, pets and, ideally, unrecognizable to anyone who may be going through your trash.
Protect your medical privacy!
Don't forget to protect your identity and privacy by removing all identifying information on pill bottles and boxes, such as your name, insurance number and prescription number. A few strokes with a black permanent ink marker works perfectly. This will help protect your identity and the privacy of your personal health information.
Friends & Family
When I took Reglan two years ago for gastroparesis I suffered what could have been severe and permanent side effects. We caught them early and after a few weeks, the symptoms resolved. Every medication comes with risks that could affect your you or, tragically, a family member that you give your medications to. In addition, doctors prescribe drugs based on a person's specific symptoms and medical history. A drug that works for you could be dangerous for someone else. Do NOT give your medications to others.
Read this and other blog entries in Jill's Journal!
We're Looking For MD & PT Recommendations in Canada & USA
You've asked. You've pleaded. You've often been desperate to find a urologist who can treat your IC. We're now collecting names to create a new database of care providers in Canada and the USA! If you have a doctor that has treated you compassionately, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form. We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.
Click here to search our database
Click here for our doctor recommendation form!
New IC Support Groups & Support Opportunities
~ Find A Support Groups
Can you imagine how great it would feel to walk into a room filled with others who understand exactly what you're going through?? Having IC is difficult at times and doing it alone is unnecessary. There are dozens of independent IC groups around the country who are waiting to help you! Don't suffer in silence at home, alone. If there is a group near you, call the group leader and introduce yourself! Click here to find a support group near you!
~ Join an Online IC Support Chat
ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders. Join us live from the comfort of your home. Please note! Chats are free for all. No log in name and password are required. Just type in a user name and go!
When: 1st & 3rd Monday of the Month, 5PM PST to 7PM PST
Where: ICN Chat Room
IC Resources From The ICN Mail Order Center
http://www.icnsales.com - (707)433-0413
Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!
Finding Your Comfort Zone
Christina's Garden Microwaveable Heating Pads
Developed exclusively for the ICN for bladder & pelvic pain patients, this 100% cotton flannel microwavable pad fits perfectly over the pelvis, extending from the just above the belly button right down to the pubic bone. Handmade in Northern California by a young pelvic pain patient who is an expert seamstress and brings a new idea to the table, custom scents. The challenge with corn based pads is that they often smelled like hot corn. These have a lovely, light and refreshing fragrance, embracing the concept of aromatherapy.
Three scents & unscented pads are available, including:
- organic chamomile
- organic peppermint
- organic cinnamon, cloves and orange peel
- unscented.
Various patterns and colors available.
* Colorado Mountain Low Acid Jams & Jellies
We found Colorado Mountain Jams at the January 2009 Fancy Food Show and they blew our socks off! These ORGANIC Jams come in several amazing flavors, very fresh, satisfying and comfortable to our tender IC bladders.
Apple Pie - Blueberry - Pear - Peach - Spiced Apple - Merlot
NO ADDED ACIDS!
*Dr. Oetker's Organic Muffin Mixes
Many IC patients struggle with the preservatives, flavorings and colorings found in most mass market baking mixes and products. We have scoured food shows near and far to find Organic Baking mixes that are more IC friendly, very flavorful and organic to boot. No more preservatives flavors in cake mixes! Yahoo!! Dr. Oetkers are simply the finest organic mixes on the market today. Their cakes, muffins, and cookies are light, flavorful and plentiful.
Carrof - Oatmeal - Corn - Apple Cinnamon
* Roastaroma & Other Herbal Teas
An interesting blend that begs the question - is this an herbal tea or an herbal coffee? Very similar to Pero or Cafix BUT with added carob and spices that combine to create a rich flavor and aroma!
100% NATURAL - NO ARTIFICIAL COLORS OR PRESERVATIVES!
