ICN Holiday Assistance Program
Every year we match IC patients who are struggling to provide a happy holidays for their family with those who can help. Led by ICN Volunteer Jaime, this program has helped hundreds of patients (families, children, seniors & singles) over the past several years. It's now time to begin our 2009 program.
Needing Volunteers To Help
This program wouldn't happen without patients who want to reach out and help another patient. In the past, we've sent families clothing, children's toys and gifts and, of course, food. This year, in this very dire economy, food assistance is our goal. If you would like to help an IC patient or family in need, please send an email to: email@example.com. In this tight economy, even a $10 donation would be appreciated.
Are You A Family Or Patient In Need?
We are ONLY accepting NEW applications this year. Please send us an email that describes your current situation. What are you struggling with? What do you need? We'll need your full name, address, phone number and a few names of local supermarkets or warehouse stores that you might be able to shop at if we sent you a gift card.
Send your application letter to: firstname.lastname@example.org
We do NOT and can NOT promise to help everyone who applies. The number of patients who receive assistance depends entirely on the number of volunteers who step forward to help. Applications will be reviewed carefully by selected ICN Staff. Phone interviews may be conducted to gather additional information. Applications accepted through December 19, 2009.
ICN Twelve Days of Christmas Sale - All IBS Products Reduced This Weekend
If you haven't been to the website, Facebook or our Twitter accounts, you may not have seen our Twelve Days of Christmas Holiday Sale. Each day we're highlight new products and offering substantial discounts of up to 40% off various items.
All Weekend (12/5 & 12/6) - ALL IBS PRODUCTS ON SALE
Monday 12/7 - PELVIC PAIN BOOKS & CD's ON SALE
Check back every day for new specials!
Cranberry Found Irritating For 90% of IC Patients
(ICN Staff - Dec. 2009)
Who would have thought that cranberry juice, long heralded to be helpful for the bladder, could provoke intense pain for IC patients. If you've had a painful IC flare from drinking cranberry juice, you're certainly not alone. In a recent ICN survey, we asked patients to share with us their experience with cranberry products. As of Dec. 1, 2009, 305 patients completed the survey. More than ninety percent reported that cranberry products bothered their bladders, triggering bladder pain, frequency, urethral tenderness and, for some, urinary leakage. Let's take a closer look at the data:
Did cranberry always bother the bladders? 90.7% of participants report that cranberry products bothered their bladder. Of these, 69.5% reported that cranberry ALWAYS bothers their bladder. 16.6% reported that cranberry OCCASIONALLY bothers their bladder. 4.6% reported that cranberry has bothered them in the past, but is rare.
Which cranberry products bothered IC patients?
- Sweetened cranberry juice bothered more than 82% of survey participants
- Unsweetened cranberry juice bothered 67.4% of participants
- Cranberry pills or supplements bothered 47.3% of participants
- Cranberry sauce, relish, jelly or jam bothered 42.6% of participants
- Dried cranberries bothered more than $7% of participants
The consumption of cranberry products triggered the following symptoms:
- Pain - 82.5%
- Frequency - 60.6%
- Urgency - 54.9%
- Pressure - 45.1%
- Urethral Tenderness - 39.1%
- Nighttime Urination - 34.3%
- Leakage - 9.1%
We asked patients if they still consume cranberry products
- 73.3% of participants reported that they avoid all cranberry products and believe that cranberry hurts them.
- 14.3% of participants report that they occasionally eat cranberry products even though that it hurts them.
- 6% reported that they eat cranberry regularly because they believe that it helps their bladder.
So, should you or shouldn't you partake in cranberry?? If you are one of the 96% of patients who find their bladders sensitive to various foods or beverages, avoiding cranberry products just makes sense.
IC Awareness - New IC Audiocast from Australia now available
Thanks to an ICN Member in Australia (Yay!! Thanks JD!), we learned of a recent broadcast on the Australian Broadcasting Corporation (ABC) that covered IC, OAB and infections in children late last month. We think it's a superb 30 minute educational opportunity. Features with three excellent guests including IC researcher Dr. David Klump from Northwestern University (Chicago) who gives an excellent discussion of how mast cells and histamines irritate the bladder wall and how various therapies can help. This IC section is the last ten minutes of the broadcast! Listen to it here!
Fall Optimist Released
The IC Optimist is the quarterly magazine produced by the ICN to share the latest news, feature stories, self- help strategies and, of course, the latest news!!! Our ICN Subscribers should have received their copy by regular mail or email late last month. Individual copies are also available for purchase.
In this issue:
(1) The 2009 IC/PBS Food Guide
(2) Nurse Practitioners Tackle IC
(3) IC and Military Health Care
(4) The Latest IC Research
(5) International Continence Society Conference Report
(6) Self-Help Tip of the Month - How To Avoid Unnecessary Surgeries
(7) Fresh Tastes by Bev - Breads of Life
The Latest IC Research
Chondroitin instillation restores bladder barrier function
This editorial by master IC writer Phil Hanno MD caught my eye. As you know, we've had a number of bladder instillations that have been proposed for IC, each with some success including intravesical elmiron, rescue instillations, intravesical hyaluronic acid (Cystistat) and intravesical chondroitin. Their method of action is interesting. Some, like rescue instillations, appear to help fight inflammation and/or soothe nerves... while others are designed to help promote the integrity of the bladder wall.
In this editorial, Dr. Hanno shares the research of a team in Oklahoma which has shown that chondroitin, when used intravesically in rats, restores what appears to be normal bladder lining function. Of course, the use of chondroitin as a bladder instillation isn't new in IC circles. It's been used for years in a product called Uracyst, available in Canada and Europe. But this is a keen insight into its potential. Watson Pharmaceuticals is in Phase III studies of a new chondroitin instillation for IC. - Jill O.
Intravesical Chondroitin Sulfate Shows Potential Therapeutic Promise for BPS
Author - Phil Hanno MD (Urotoday)
It seems evident that in many cases, bladder pain syndrome pathophysiology may involve epithelial dysfunction. The bladder maintains a complex set of defenses comprising tight junction proteins and a dense glycosaminoglycan (GAG) layer on the specialized urothelial apical cells (umbrella cells). These defenses are presumably compromised in some BPS patients causing the urothelium to become “leaky”, resulting in the appearance of substances added intravesically into the circulation or reabsorption of fluorescein from urine. The GAG layer has been proposed to represent a major component of the impermeability barrier, though its importance can be questioned based on the variability of symptomatic results from GAG therapies taken orally or administered intravesically. Intravesical GAG therapy with sodium pentosan polysulfate, heparin or hyaluronic acid has not yet been proven efficacious in large, multicenter, randomized controlled trials.
An important publication by Paul Hauser and colleagues from Oklahoma City looked at the GAG chondroitin sulfate in an animal model to explore its possible applicability to therapy of BPS. Let me state at the outset of this report that I (Philip Hanno) have been a consultant for Watson Pharmaceuticals, a company currently testing intravesical chondroitin sulfate for BPS in phase 3 trials around the country.
The Oklahoma group, led by Robert Hurst, quantified chondroitin sulfate binding to normal and acid damaged mouse bladder over the range of pH values expected in urine. Chondroitin sulfate provides several potential advantages over heparin, sodium pentosan polysulfate, and hyaluronan in simple barrier restoration. It has no effect on the coagulation system (although this has not been a problem with any intravesical treatment to date), it is inactive against many receptor systems that are affected by heparinoids and hyaluronan, and it is inexpensive.
Hauser and co-workers found that in a model of acid damaged rat bladder, intravesical chondroitin sulfate restored bladder impermeability to rubidium ions to control levels. 86Rubidium belongs to the same family of elements as potassium and is used as a model for potassium movement across membranes because of the impractically short half-life of potassium isotopes. They quantified the capacity of acid damaged bladder to intravesically adsorb applied chondroitin sulfate and found that this binding is saturable, supporting the intravesical dose of 400 mg used currently marketed in Canada for BPS intravesical therapy.
Source: Hauser PJ, Buethe DA, Califano J, Sofinowski TM, Culkin DJ, Hurst RE Chondroitin sulfate intravesical solution is currently in phase 3 testing in the US. J Urol. 2009 Nov;182(5):2477-82
(Reprinted with permission of Urotoday)
Prevalence of Interstitial Cystitis in Vulvodynia Patients Detected by Bladder Potassium Sensitivity.
Intravesical potassium sensitivity has been reported in 82% of vulvodynia patients, suggesting the bladder generates their pain and indicating interstitial cystitis (IC)/painful bladder syndrome deserves greater attention in differential diagnosis of vulvodynia. The aims of this study were to: (i) determine the prevalence of IC as detected by intravesical potassium sensitivity; and (ii) survey for urinary, pelvic pain, and sexually associated symptoms in patients with vulvodynia.
Consecutive patients with vulvodynia were surveyed for urinary and pelvic pain symptoms using the pelvic pain and urgency/frequency (PUF) questionnaire, and tested for abnormal epithelial permeability using the potassium sensitivity test (PST). Rates of positive PST were determined overall and by PUF score range, and were compared in patients with intermittent vs. constant vulvodynia symptoms. Main Outcome Measures. Results of intravesical PST.
Of 122 vulvodynia patients, 102 (84%) had a positive PST and 97 (80%) had urologic symptoms. Of the 87 sexually active patients, 81 (93%) reported pain associated with sex. Patients with constant (72/87, 83%) vs. intermittent symptoms (30/35, 86%) had no significant difference in rates of positive PST. Mean PUF score was 13.2. PUF scores of 3-4 were associated with an 86% rate of positive PST; scores 5-9, 44%; 10-14, 84%; 15-19, 87%; 20-24, 86%; and 25 and above, 100%.
Most patients with vulvodynia have a positive PST and urgency/frequency, indicating pain of bladder origin (IC). IC deserves far greater consideration in the differential diagnosis of patients with vulvodynia. This represents a dramatic change for the gynecologic paradigm of vulvodynia, which in many cases appears to be referred pain from the urinary bladder.
Source: Kahn BS, Tatro C, Parsons CL, and Willems JJ. Prevalence of interstitial cystitis in vulvodynia patients detected by bladder potassium sensitivity. J Sex Med 2009 Oct 20
More Newly Released Research Via PubMed & UroToday
- Pelvic floor hypertonic disorders: identification and management.
- Long-Term Outcomes of Urgency-Frequency Syndrome Due to Painful Bladder Syndrome Treated With Sacral Neuromodulation and Analysis of Failures.
- Psychosocial Phenotyping in Women With Interstitial Cystitis/Painful Bladder Syndrome: A Case-Control Study.
- Pharmacologic attenuation of pelvic pain in a murine model of interstitial cystitis.
- Risk factors for poor sleep quality among patients with interstitial cystitis in Taiwan.
- The relationship between sexual abuse and interstitial cystitis/painful bladder syndrome.
Understanding Pudendal Neuralgia - Carpal Tunnel of the Butt?
Stephanie Prendergast MSPT is one of the leading physical therapists in the country for patients struggling with a wide variety of pelvic pain problems. She also happens to be a contributing writer to the San Francisco Examiner, where she has written one of the best articles that we've seen on pudendal neuralgia.
Pudendal neuralgia (aka pudendal nerve entrapment), a compression of the pudendal nerve in the pelvis, can trigger a variety of symptoms including pain with sitting, urinary hesitancy, frequency, pelvic floor dysfunction, pain with sex and/or a sensation of a foreign object in the rectum. In some circles, PNE is also called ‘cyclist’s syndrome’, ‘pudendal canal syndrome’ or ‘Alcock’s syndrome.’
Sadly, some PNE patients are misdiagnosed with IC or other bladder conditions before they finally receive a correct diagnosis. One key difference between the two are the "positional" symptoms that PNE patients struggle with, especially intense pain when they sit down that is relieved or reduced as soon as they stand up or lay down. In those cases, it's clear that when sitting, something is clearly pressing on, pinching or stressing the pudendal nerve. If you have these symptoms, you could read more this and, of course, talk with your doctor.
5th Annual Women's Pelvic Health Conference - Houston TX - Feb. 20, 2010
Once again, PURE HOPE is offering a comprehensive conference for pelvic pain patients, including those with IC. This may be the conference of the year for IC patients!!! There's a excellent panel of speakers including:
Ken Alo MD - Topic: “Pain Management Techniques and Motor Dysfunction”
Daniel Brookoff, MD, PhD* - Topic: "Managing Pain with External Stimulation"
Edward Stanford, M.D., M.S. - Topic: "Prevalence of Interstitial Cystitis, Endometriosis, Adhesions, and Vulvar-Pain in women with Chronic Pelvic-Pain" and "Treatment Modalities, Health Care Resources, Utilization, & Costs in Patients Diagnosed with Chronic Pelvic Pain"
Andrew B. Sandler, M.A., Ph.D* & Gaye Grissom Sandler B.A. - Topic: "One Couple’s Journey with Chronic Pelvic Pain"
Peter Lotze, M.D. - Topic: "A Basic Guide to Pelvic Health"
Christopher P. Smith, M.D. - Topic: "Oral Medications for the Treatment Algorithm of Patients with Overactive Bladder or Pelvic Floor Dysfunction "
George T. Somogyi, M.D, Ph.D. - Topic: “Current Research for Neurourology”
Esperanza McKay, B.C. - Topic: "Pelvic Floor Muscle Rehabilitation"
Fred S. Emmite, R.Ph., CDM - Topic: "Diet and Nutrition: What you Eat can Affect your Bladder"
Book Review - New Book Can Help Patients Struggling with Sexual Pain
By Jill Osborne, MA - November 24, 2009
"Ending Female Pain - A Woman's Manual " by Isa Herrera, MSPT is a ground breaking book for women with pelvic and sexual pain, containing dozens of easy, helpful exercises and tips that offer hope for patients with pelvic floor problems, vulvodynia, IC, etc. etc. This book gives you vital, easy and effective stretches, exercises and tips to help you take control and manage your pelvic pain symptoms.
Her discussion of pelvic anatomy is amazing. Yes, my friends, you will need to get a mirror. She'll walk you through an excellent and absolutely fascinating anatomy lesson so that you can see, with your own eyes, if your pelvic floor is tight, relaxed and/or if you're doing your reverse kegel or kegel exercises correctly.
She teaches you how to find and locate trigger points in your pelvic floor and, better yet, teaches you how to reduce those painful muscle knots. She offers massage tips that are easy and very effective at reducing adhesions around c-section and other surgery scars, including episiotomies. Her discussion of the vulva and vulvar skin techniques is probably the best I've ever read and, I humbly admit, better than our own on the ICN. Yes, we will be updating that information.
Using both pictures and diagrams, she offers a series of exercises and stretches for the relief of pelvic pain that I can't wait to try, including reverse kegel exercises, a GREAT series of exercises using pilates ball, several yoga stretches that I'm sure you probably haven't seen before yet are perfect for stretching out the pelvis, upper legs and lower back and several foam rolling techniques.
For those of you, like me, who work at a computer or at a desk all day and struggle with back and tooshie discomfort, she offers something that I've waited for years for... a series of easy, discrete stretches you can do at work to help you reduce muscle stress and tension. I wish I had had this years ago because I can't tell you how much pelvic pain I've had at the end of some work days.
But, what makes this book truly unique and, I think, a must read for anyone with IC and pelvic pain, is her practical discussion of sex and how to reduce discomfort. Her tips are superb.. from performing a reverse kegel exercise before intimacy to help reduce pelvic floor tension, to using vaginal dilators for patients with vaginismus to a very unusual and obviously effective "vaginal steam" that can help make intimacy more comfortable.
Self Help Tip of the Month on Video - Holiday Coping Strategies
It's so great that we can now use videos for sharing self help strategies. We've filmed a new video that shares some of our favorite holiday coping strategies. From deciding whether to stay home if you're in a flare to handling holiday meals, this quick nine minute video might give you just the inspiration you need to get through this holiday season!
ICN Hot Drink Contest - $100, $75 and $50 prizes
What's one of the most FRUSTRATING parts of the IC diet? Not having that morning and often cherished cup of coffee, tea or even hot chocolate.We need something warm, satisfying and flavorful to get through this coming winter and flu season. We're in the middle of our IC Friendly Hot Beverage Contest (ending Dec. 31, 2009). Winners will get some very sizable gift certificates for the ICN Store for their submitted entries.
Recipes can fall into two categories: (1) Recipes for patients who are more diet tolerant and can comfortably drink a low acid coffee or tea and (2) Recipes for patients who are VERY diet sensitive. Obviously, these recipes should not include any coffees.
Entries can include:
(1) recipes for coffee drinks made with low or no acid coffee (Euromild, Puroast or Tylers NO ACID coffee) OR any of the herbal coffees (Cafix, Pero, Kaffree Roma, Roastaroma etc)
(2) recipes for tea drinks made with chamomile, peppermint, gingerbread spice or the other roasted carob drinks.
(3) recipes involving steamed milks... ideal for patients in severe flares.
(4) recipes using other commercial products... i.e. white chocolate milk and the like.
(5) recipes using carob as a replacement for chocolate! (i.e. hot carob drinks).
(6) for patients who are lactose intolerant, recipes can include soymilk, rice milk, almond milk or a powdered non-dairy creamer.
We're Looking For Medical Care Provider Recommendations
With the help of new ICN staffer Sharon, we've been updating our medical care provider listings. In addition to finding physicians who are interested in working with IC patients, you'll also find dietitians, pain specialists and psychotherapists who might be able to help you.
We're ready for more suggestions and recommendations. Who better to tell us what medical care providers are the best than you, the IC patient. 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.
All Slim Fast Canned Drinks Recalled
Unilever United States, Inc., in cooperation with the U.S. Food and Drug Administration (FDA), is conducting a nationwide voluntary recall of all Slim-Fast® ready-to-drink (RTD) products in cans, due to the possibility of contamination with Bacillus cereus, a micro-organism, which may cause diarrhea and possibly nausea and/or vomiting. The probability of serious adverse health consequences is remote. The products were sold in stores nationwide. Read more!
New Bladder Friendly Recipes
We love patient recipes. Who better to share what works for them then patients just like you. Here are two more recipes submitted in the past month! Please help us build our list by sharing your favorite IC friendly recipes in our IC Diet: Recipes and Menu Ideas Forum.
Simple Chicken Soup - ICN Member loveslife
Here's a pretty simple recipe that you can vary to your tastes. It does have garlic and onion in it so you need to know your limits. Garlic is usually pretty well tolerated and onion that is cooked is tolerated by others including myself. You can always add different veggies or change the seasonings. For me I'd add more garlic but then I love garlic! Try to get a decent MSG free canned chicken broth. If you're feeling really adventurous, you can always cook the broth from scratch with the bones and scraps (really makes the best) but the canned works in a pinch. Trader Joes has pretty decent chicken broth that comes in cartons too.
SIMPLE CHICKEN SOUP
2 tablespoons butter
1/2 medium onion diced (skip onion if you can't tolerate and add one more garlic clove)
3 cloves garlic minced
1 medium carrot sliced
1 medium celery stalk sliced
1/4 to 1/2 cup frozen peas and green beans (cut in half)
2 tsp dried parsley
1 tablespoon dried tarragon
salt and pepper to taste (use pepper only if you can!)
1 small boneless/skinless chicken breast cubed into 1/2 inch pieces
2 cans of chicken broth (make sure its MSG free/preservative free!)
1 cup of cooked egg noodles
Get your noodles cooked if you haven't already and set aside. Melt butter in another pan. Saute onions until almost translucent, then add garlic and saute for another minute. Add the herbs, carrots and celery and continue to saute for a couple more min's. Add the chicken broth and bring to a low simmer. Cook with a lid on for about 20 to 30 minutes until the carrots are tender. Add your peas and green beans and cook for another minute or two. When its back to a good simmer throw in your cubed chicken and cook until done (2 to 5 minutes, depending on the size of the chicken pieces. You can always cut one in half to check if its done. You just don't want to overcook them.) Add your drained noodles. Season with salt and pepper to taste and enjoy!
WANTED! Winter Warmth Recipe Suggestions
When icicles are hanging from the rooftops and a simple walk out to the car requires long johns, gloves, a down parka, and boots, what foods warm your soul?? What are your favorite winter time meals to eat by the fire?? Stews?? Soups? Mexican Food??? We're looking for your favorite "warm your bones" winter recipes. Please scour your favorite recipes and submit them to our IC Diet: Recipes and Menu Ideas Forum. You can also review other submissions there and in our online IC cookbook, the IC Chef!
New IC Support Groups & Support Opportunities
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. Why recreate the wheel and try to figure this out on your own when there are dozens of independent IC groups around the country who are waiting to help you! IC Support Groups will help you learn more about IC, about resources in your area and, most of all, can help you make some great new friends! 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!
ICN Live Support Chat Schedule
ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders, Leslie Grinnell & Kathi Heintz. Join us for a typical support group meeting live from the comfort of your home. What could be easier?? 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!
Tyler's NO ACID Coffee
Tyler's Coffee was brought to our attention by an IC patient who found that he could tolerate this truly NO ACID coffee. We hadn't heard of this company before because it is still quite small yet is quickly becoming an entrepreneurial success story in the Southwest USA where it is sold in a variety of grocery stores. But what makes Tyler's coffee unique is the family that runs it. Tyler is now 19 years old. A true whiz kid, he started the business at the age of 13 after his father designed a roaster that would create pH neutral (7.0) coffee. We think it's fantastic and absolutely wanted to share it with our ICN users.
Please note that we are ONLY selling the decaf version of this coffee. Why? The roasting process they use actually creates more caffeine than normal, over 40% above other coffee thus the regular coffee is very concentrated and, we think, probably too caffeinated for a typical IC patient. But, this decaf is definitely worth a try!
We're bringing in a brand new line of carob candies that we fell head over heels for. What's great is that it comes in small, bite size pieces that are VERY affordable. Look for them in the next week to ten days!
Looking For Gift Ideas?
(1) Think daily comfort. What does a patient in a flare often depend upon?? A great microwaveable heating pad or a ten pack of Bodiheat One Time Use pads!
(2) Diet is everything to an IC patient. Make sure they have a book on diet and IC!
(4) The latest pelvic pain strategies! We suggest the book Heal Pelvic Pain and a Guided Relaxation CD!
(5) Feeling the need to start a new workout program in 2010? How about an IC friendly Pilates program?
(6) Struggling with an unpredictable IBS bowel?? The book First Year IBS and a can of Acacia Fiber is immediately helpful and something they might not buy for themselves out of embarassment.
(7) Infections getting you down? How about some UTI Test Kits? D-Mannose?
(8) How about a selection of low acid coffees???
(10) Give the power of information. How about a subscription to the ICN quarterly magazine, the IC Optimist