Hot IC News From the AUA Conference
This was a watershed year for interstitial cystitis at the American Urology Association 2010 Annual Meeting, the largest urology conference in the world. In addition to new and promising research studies, IC also received coveted plenary session where thousands of urologists heard a fascinating debate about IC.
New American Guidelines on IC
The highlight of the event was the release of the new American guidelines on interstitial cystitis that will be published later this year once peer review has been completed. The Americans will be using the name Interstitial Cystitis / Bladder Pain Syndrome (IC/BPS) to describe our disorder. The formal definition will be "an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes."
But, what makes this particularly powerful is the new treatment protocol. The committee suggests that patients INITIALLY receive good educational materials and outreach, including the introduction of the IC diet principles and general stress and relaxation strategies as needed. After this, a new five step protocol for treatment was suggested:
1. First Line Treatments include the use of oral medications including amitryptiline, cimetidine, hydroxzyine and pentosan polysulfate and/or intravesical Instillations including dmso, heparin and lidocaine.
2. Second Line Treatments are to be used if no acceptable relief occurs with first line options or if the symptoms suggest a need for a more invasive approach. These include a cystoscopy under anesthesia with a short duration, low pressure hydrodistention and, if present, the treatment of Hunner's Ulcers with fulguration, laser therapy or triamcinolone injection.
3. Third Line Treatment include oral cyclosporine and/or the implantation of a neurostimulation device.
4. Fourth Line Treatment is the use of Intradetrusor Botox A.
5. Fifth Line Treatments are the rarely used surgical methods.
Therapies to avoid included long term antibiotics, intravesical BCG, intravesical RTX, high pressure long duration hydrodistentions and long term oral steroid use. Kegel exercises were also discouraged given the presence of pelvic floor dysfunction in IC.
Webcasts & Articles!
AUA Webcast - What's in a Name? Painful Bladder Syndrome: What Happened to Interstitial Cystitis? - Plenary Session featuring Drs. Christopher Payne, Deborah Erickson, Jorgen Nordling and Alan Wein
AUA Webcast - Interstitial Cystitis/Painful Bladder Syndrome Preliminary IC/BPS Clinical Guideline - Plenary Session featuring Dr. Phillip Hanno
AUA Webcast - Highlights in Inflammation/Infection Poster Sessions - This very brief summary highlighted some key studies presented in the inflammation and infection poster sessions and features well known IC research Dr. Lowell Parsons. These are very brief and very academic.
UroToday Articles - AUA and EAU 2010 Reports
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.
Elmiron & Hair Loss:
I was wondering if anyone could help me out, I have a close friend that also has IC and she is losing all her hair with elmiron. She claims she is losing hair all over her head and even other people like clients and her hairdresser have commented on her hair loss. She just started elmiron in Nov and is already having this horrible side effect. She is approx 50 years old and african american (I am just mentioning that because of hair type). She does not want to stop taking the elmiron and says she will get a wig if necessary. She is really down and any advise you can give her would be a big help. Thanks in advance! Read more and/or respond
What Summer Fruits Are OK for IC?
I had a bad experience with watermelon about 4 hours ago. Within 30 minutes the burning hit me really bad and has not let up since. I know citrus fruits are no-no's due to the citric acid but I wondering about peaches and plums. Any advice would be helpful as I try to learn what my trigger foods are. Read more and/or respond
What has helped the most with frequency?
I would appreciate hearing anything and everything where people have had success with treatments, whether it is prescription medication, over the counter medicine, or physical therapy. Please reply in regards to what has helped you with frequency related issues. Read more and/or respond
Other current discussions: Please come on over and join us!
- Song Tag: A Game
- Starting a New Treatment: Vaginal Valium Suppositories and a THEORY
- 26 Weeks; Need Help Coping with Pain
In The News - ICN Staff Picks
Article - Commentary on Chronic Prostatitis/Chronic Pelvic Pain Syndrome: The Status Quo Is Not Good Enough (UroToday)
Daniel Shoskes MD (Cleveland Clinic) has written a superb article that, we think, deserves special mention in our newsletter. It shares the frustration that he has experienced as a provider when working with patients who have been shuffled through the system, mislabeled with prostatitis, ignored, poorly diagnosed and inadequately treated. If you've been diagnosed with chronic prostatitis and/or suffer with chronic pelvic pain, we think you'll find this article very interesting.
Article - Stress So Bad It Hurts -- Really (Wall Street Journal)
Any IC patient who has had a wicked flare when under intense stress will find this article utterly fascinating and reassuring. No, you are not imagining it. No it hasn't caused your IC but stress does take a toll on the body, on the gut and, as we all know, on the bladder. This beautifully written article will help you understand what's happening in your body and offers steps that you can do to help reduce this ever so predictable reaction. You are not alone!
Book - Eat This, Not That: 2010
Imagine walking into a coffee shop with a family member has a desperate craving for chocolate. (Not you, of course!) Should she select a chocolate frappuccino or a piece of chocolate cake? Well, if you carry Eat This Not That: The 2010 Edition, it will share that the drink is a whopping 700+ calories with a bucket load of sugar, while the cake was just 300 calories.
The Eat This, Not That books help you select items which are healthier than others when you eat out , when you're desperate for a drink and, of course, when you cook at home. What's even more interesting is that when co-authors Matt and Dave started publishing their "worst food lists in america," restaurants and chains responded. After Chili’s Awesome Blossom took the runner-up spot on the “Worst Foods in America” list, Chili’s removed the appetizer from their menu entirely. Pepperidge Farm followed suit after being placed on the Worst Foods list and discontinued their Roasted Chicken Pot Pie. When Jamba Juice earned a citation on the Worst Drinks in America list, the chain stopped serving the largest size of their Chocolate Moo’d smoothie and recommitted itself to becoming one of the healthiest restaurant chains in the nation.
The problem is, as the old crop of calorie atrocities were eliminated, a new army of gut-bombs emerged in their place. That’s why the authors created Eat This, Not That! 2010, to empower you with the knowledge to battle a food industry bent on sabotage your waistline with unwanted and unnecessary calories. In this new-and-expanded edition, you’ll find fresh restaurant and supermarket comparisons, an encyclopedia of food packaging lies, and the invaluable guide to eating healthy on a budget. Essentially you’ll learn how to make effortless food swaps that will help you strip away 10, 20, 30 pounds or more.
We strongly recommend this series of books particularly for those of you who are worried about your weight! You'll be stunned at all the extra, meaningless calories you've been eating.
Spring 2010 IC Optimist Released
- A Natural Approach To The Treatment of IC: An Interview with Diana Brady - If you're interested in a natural approach to treating IC, you'll find the interview by Diana Brady fascinating as she shares two decades worth of experience in holistic strategies and treating IC naturally.
- Chronic Pelvic Pain: Connecting The Dots - Susan Bilheimer shares insight into chronic pelvic pain, what contributes to it and how it can and should be treated compassionately and early.
- Consumer Alert: Do You Know Where Your DMSO is Coming From?
- The Latest IC Research
- Self-Help Tip of the Month: Don't Be Shy About Your Symptoms - If you find yourself getting tongue tied when trying to talk with your doctor about your bladder or bowel, take heart! You are not alone. This article shares some strategies that can help you during your next doctors appointment
- How Does Your Garden Grow - Julie Beyer RD shares ideas on creating an IC friendly garden that will not only soothe your spirit but provide IC friendly veggies as well!
- Soy and IC: Three Patient Stories - Are you confused about whether you can or should eat soy?? Are some soy products safer than others?? Bev Laumann shares a wealth of information on soy, the various soy products and the issue of hormones. If you love soy, this is a great article to read.
Summer "Hot Weather Cold Drink" Contest
We had such a wonderful response to our Hot Drink Contest last winter that we decided to have a Summer "Hot Weather Cold Drink" contest too!!! Why?? We need cool, refreshing and IC friendly drinks for the brutally hot days of summer. Don't you miss your sweet tea?? How about an IC friendly frappuccino?? We think you're going to have some great alternatives, perhaps using IC friendly low acid coffees, low acid juice drinks or even new variations of a flare friendly vanilla shake. Winners will get some very sizable gift certificates for their submitted entries.
(1) ICED or BLENDED 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) ICED OR SWEET TEA RECIPES - made with chamomile, peppermint or the other roasted carob teas
(3) MILKSHAKES OR ICED MILKS - recipes involving iced or blended milks that are ideal for patients in severe flares.
(4) SUMMER COCKTAILS - virgin or alcoholic.. that may be more bladder friendly for patients who can tolerate small amounts of alcohol.
Contest Deadline: July 31, 2010
Summer 2010 Bladder Academy Classes
The Bladder Academy offers monthly VIDEO & PHONE IN courses for patients who are trying to gather information on IC. You can participate by phone or via computer (gotomeeting.com), where you'll have the chance to watch a power port presentation, hear an audio lecture and ask questions! We'll send you a link to the classroom shortly before the class to enter the room. Come join us and learn the latest about IC!
Newly Diagnosed & IC Treatments - Instructor Jill Osborne MA
- Monday June 28, 2010 - 4PM PST, 7PM EST
- Monday July 26, 2010 - 4PM PST, 7PM EST
- Monday August 23, 2010 - 4PM PST, 7PM EST
Introduction to the IC Diet - Instructor Julie Beyer RD
- Tuesday June 22, 2010 - 4PM PST, 7PM EST
- Monday July 19, 2010 - 4PM PST, 7PM EST
- Monday August 16, 2010 - 4PM PST, 7PM EST
Making Peace with Stress and IC - Instructor Julie Beyer RD
- Tuesday, June 29, 2010 - 4PM PST, 7PM EST
- Tuesday July 27, 2010 - 4PM PST, 7PM EST
- Tuesday August 24, 2010 - 4PM PST, 7PM EST
Anxiety and IC - Instructor Jill Osborne MA
Managing IC Flares - Instructor Jill Osborne MA
Private Classes & Coaching
The ICN offers private classes or personal coaching for patients who cannot attend regular classes or who would like to discuss their issues and/or ask questions in depth. There are three instructors currently on the faculty, including: Jill Osborne MA (diagnosis, treatments, self help, flare management), Julie Beyer RD (the IC diet, menu planning, elimination diet strategies) or Diana Brady MA CNC (alternative and naturopathic strategies). Read more about the instructors and/or schedule a coaching session
Consumer Alert - Ketamine Bladder Syndrome Continues To Grow
(By Jill Osborne MA)
This years AUA conference brought yet more studies revealing the catastrophic destruction that can occur in the bladder as a result of using ketamine, a popular street drug that is quickly replacing heroin as a drug of choice on the street. Urology clinics around the world are now seeing hundreds and possibly thousands young, teenage ketamine addicts with blood in their urine, severe pain, frequency and urgency. Sadly, if the drug abuse isn't stopped, the bladder damage appears to be severe and permanent.
The ICN has taken a lead role in providing patient outreach and awareness activities for this new and devastating form of cystitis by building the website: http://www.ketaminebladdersyndrome. com.
Please help us spread the word not only to teens and young adults who might be tempted to use the drug but also your urologist. If a young patient presents with blood in their urine along the above symptoms, we strongly encourage physicians to ask about drug use and, if they admit to using ketamine, that they be encouraged to enter rehab immediately. More to come on this growing public health problem.
My Food Styles With Chef Daniel Norton - Light the Grill
Editors Note: Chef Daniel Norton has taken a strong interest in helping IC patients enjoy flavorful and inspiring food despite our dietary limitations. His blog, MY FOOD STYLE, has quickly become a popular favorite in the IC community where you can read columns and submit questions to him. This month he takes on red sauce. - Jill O.
Light the Grill - Steps to enjoying safe BBQ
What better way to start the day than enjoying the little t-ball game at the park behind my home. There is something about parents cheering and aluminum bats clanging that bring about a lot of memories for me, for I was once the dirty faced kid who slid face first into everything, sometime for no particular reason. I was also known for being the kid who tried to use his post game meal ticket twice at the snack shack. Unfortunately for me they were too smart for my illusions and as a result my love for food and the endless ways I have tried to get it has brought me to my patio where I am once again wishing I had that famous meal ticket. If only I could still fit into my uniform?
IC/PBS Clinical Trials
Clinical trials represent an important part of the IC research process because they help to test various theories and the effectiveness of potential new therapies. You can learn more about trials, their pros and cons and how to participate in the ICN Clinical Trial Center and/or at clinicaltrials.gov.
Here are a few of the newer studies being conducted:
We're Looking For Medical Care Provider Recommendations in USA & Canada
Attention patients in Canada. 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! 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.
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. 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!
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. 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!
Introducing Christina's Garden, a new line of custom scented 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.
- organic chamomile
- organic peppermint
- organic cinnamon, cloves and orange peel
Various patterns and colors available.
IC Friendly Pear Bars
A delightful mid-day snack of wholesome and simple fruit and energy bars. Gorge Delights pear-pear and pear-blueberry bars are a popular favorite for IC patients. If you've never tried a Larabar, you should! A raw food energy bar with no flavorings or preservatives, these are not only healthy but also a great energy pick me up in the afternoon!
Prelief - 300 count
Foods high in acid, particularly coffees, teas, green teas, sodas, tomato products and fruit juices are notorious for triggering interstitial cystitis flares and bladder pain. Prelief can help reduce the acid found in urine, thus preventing some of the irritation that might have occurred after eating, for example, a slice of pizza! It has helped thousands of patients eat a more balanced diet, while still enjoying an occasional risk food or two. It's great for those moments when you might be eating out and are faced with a food that could be irritating. Prelief has also been found helpful for patients struggling with stomach, GI and/or IBS.