- IN THIS ISSUE: (View on the web)
- Spring 2009 IC Optimist Now Available
- The Latest Research - Urgency Is Not Just Urgency, Polyomavirus Suspected in Two IC Patients
- New IC Educational Videos - Managing IC Flares, Exercise and IC, Coffee and IC
- New Book on Chronic Pelvic and Sexual Pain - Secret Suffering
- Self-Help Tip of the Month - Should your comfort be a priority in your care?
- New IC Friendly Coffee Alternative - Roastaroma
- Consumer Alert - UTI Antibiotic Nitrofurantoin Recalled
- New Bladder Friendly Recipes - Chicken & Veggie Quesadillas & Red Pepper Pesto Pasta Salad
- Support Opportunities
- The ICN Shop - What's New in the ICN Shop?
Spring 2009 IC Optimist Now Available
The Spring 2009 IC Optimist is currently being sent to our subscribers throughout the world via snail mail and, shortly, by email. This expanded issue of the Spring 2009 IC Optimist is also available for purchase by email or in print in the ICN Shop!
This issue includes:
(1) ICN Editorial - On Faith
ICN President Jill Osborne tackles the controversial topic of religious persecution of IC patients, particularly those who face criticism at home. We must let our voice be heard. IC isn't a spiritual condition. It is not the result of not being a specific faith nor is it punishment for past sins. It is ONLY and SIMPLY a medical condition. With strength and courage, we must let our voice be heard. IC patients deserve support and compassion, not blame or accusation.
(2) Feature Story - The Treatment and Mistreatment of Chronic "Urgency and Frequency."
IC patient advocate kay Zakariasen MA and Jennifer Hill MD release the results of their study on the treatment and mistreatment of chronic bladder symptoms, particularly the use of older, outdated and/or potentially harmful therapies such as urethral dilations and silver nitrate.
(3) Feature Story - She's Having A Baby: One Woman's Story With Pregnancy
IC writer Stacey Shannon had exciting news to share this Spring. She's pregnant with her first child and is contributing a pregnancy journal to share her story. We are blissfully happy for her.
(4) Feature Story - Finding an IC Friendly Wine
If you've missed drinking an occasional glass of wine, take hope. There are low acid, low alcohol wines that are more bladder friendly. Having grown up in the Wine Country, Jill Osborne shares a glimpse of the science of wine making, suggests lower in acid wine varieties (Got Merlot?) and why visiting the wine country is a great trip even for those who don't drink wine at all.
(5) Put Some Spring In Your Step
ICN Yvette continues her exercise series with a great article on walking, a truly IC friendly exercise form!
(6) Great Ways With Eggs - A Fresh Tastes Column by Bev Laumann
Bev Laumann, author of "A Taste of the Good Life: A Cookbook for an IC Diet" shares another great column on the IC diet, including several tasty recipes
Of course, we also have the latest IC research studies, IC In the News & Self-Help strategies!
28 pages
Purchase Current & Back Copies As A Single Issue
The Latest IC Research
Urgency Is Not Just Urgency
Editors Note - With the somewhat chaotic attempt to create a new "consensus based" name for IC in the past several years, some of the most productive discussions have been about "urgency." What is it? Why does it occur??? What does it feel like? As a teen with frequency and urgency, I didn't have "sudden" moments of urgency which is what the name "urgency" implies to me. What I remember most is being unable to sleep because my bladder always felt very full. It was a more steady, rather than sudden, sensation. Interestingly, this research study shows that there are different types of urgency. It's quite fascinating, actually! - Jill O.
By Philip Hanno MD (Urotoday - May 21, 2009)
“Urgency” is the cornerstone of the diagnosis of overactive bladder (OAB) as well as a common complaint of patients with BPS/IC. What the term actually refers to when used by patients remains problematic and the subject of some controversy. The International Continence Society defines it as a “sudden compelling desire to void that is difficult to defer”. The word sudden is designed to differentiate the sensation from the “urgency” that patients with BPS/IC complain of, but the distinction is quite vague in practice. Many believe that it is the reason for the urgency (fear of incontinence vs. pain) that should make the distinction.
Dr. Jerry Blaivas and colleagues from New York City published an interesting study detailing the results of a survey administered to 48 consecutive patients who complained of urinary urgency. The survey was validated by administering 2 different questionnaires. Each group of 24 patients received one questionnaire twice (for test/retest reliability) and also received the other questionnaire. For questionnaire #1 the urge sensation was an intensification of the normal sensation for 68% of patients and it was a different sensation for 31%. For questionnaire #2, it was an intensification of the normal urge in 71% and different in 29%. In the crossover section only 1 of 48 subjects changed their response.
Blaivas points out that some authors believe that urgency is like a light switch; it is either on or off and cannot be graded. It differs from urge, which is a normal physiologic sensation. This distinction has been based on expert opinion. The authors’ data suggests that urgency is comprised of at least two different sensations in the OAB population. One is an intensification of the normal urge to void, and the other is an altogether different sensation. In the over two-thirds who experience the first type, grading of urgency should be possible and the light-switch theory would not hold.
If one includes the urgency described by the BPS/IC patients, the situation becomes even more complex. One word may not do justice to what we or our patients are trying to describe, and better definitions and terminology may be required to facilitate a proper history and basic and clinical research studies.
Source: Urotoday
Reference: Blaivas JG, Panagopoulos G, Weiss JP, Somaroo C Two Types of Urgency Neurourol Urodyn. 2009;28(3):188-90
Polyomavirus Found in Two IC Patients in Australia
Researchers in Australia share two interesting case studies of patients that they believe had interstitial cystitis caused by the BK polyomavirus. According to Wikipedia, the BK polyoma virus produces a mild respiratory infection and can affect the kidneys of immunosuppressed transplant patients. Both of these viruses are very widespread: approximately 80 percent of the adult population in the United States have antibodies to BK and JC. This is, we think, one of the first reports associating any virus with interstitial cystitis. Both patients responded well to treatment with an intravesical cidofovir treatment.
Source: Eisen DP, Fraser IR, Sung LM, Finlay M, Bowden S, O'Connell H. Decreased viral load and symptoms of polyomavirus-associated chronic interstitial cystitis after intravesical cidofovir treatment. Clin Infect Dis. 2009 May 1;48(9):e86-8.
Other Studies of Interest
Gene Expression Profile of Bladder Tissue of Patients with Ulcerative Interstitial Cystitis
New IC Videos
After a year of prep work, we've finally launched a new series of ICN Videos featuring self-help tips, diet strategies, an orientation for newly diagnosed patients and more. The first few segments are below but we'd like to ask you what subjects you would like to see covered in future videos. Anything you like??? You don't like??? All feedback, constructive suggestions and ideas welcome! Please send directly to Jill@ic-network.com.
Managing Interstitial Cystitis Flares |
Exercise and Interstitial Cystitis |
Coffee and Interstitial Cystitis |
Suggested Books For IC |
New Book on Pelvic and Sexual Pain - Secret Suffering
When one of every five women between ages 18 and 50 in the United States have sex, it hurts, often badly. Until now, very few patients ever talked about their experience until a new IC hero, Susan Bilheimer, arrived on the scene. A chronic pelvic pain patient, Susan has been a driving force in creating this book and, partnered with Dr. Robert Echenberg, now offers hope and encouragement to the millions of women struggling with this condition.
Secret Suffering: Understanding Women's Sexual Pain and How That Affects Relationships has it all. Patient stories, a husbands point of view, a same sex couples experience with pelvic pain, the dilemma confronting single women with chronic pain, faith and the poignant story of two men who experience sexual pain. They talk about the difficulties working with the medical community but the great hope promised by a new, far more accepting medical paradigm of chronic pelvic and sexual pain.
The appendix offers 64 tips to relieve sexual and pelvic pain!
I can't say enough about this book. It's now at the very top of books I will be recommending to patients struggling with IC and intimacy. This will, beyond any other book I can suggest, break your isolation and show you that you are not alone and that there is hope! It's truly a must read.
We will not be selling this book directly because the "library" publisher has created a reseller pricing structure that does not encourage small resellers and bookstores. Thus, we're going to promote it through our Amazon Affiliate program instead. Learn more at:
Susan also has a blog that you might enjoy reading at: http://www.secretsuffering.com
Self-Help Tip of the Month - Should Your Comfort Should Be A Priority In Your Care?
If you spend much time with older IC patients who were diagnosed with interstitial cystitis in 60’s, 70’s or 80’s, you’ll often hear scary stories about the “old” bladder therapies. Back then, infection was still considered the likely cause of IC thus treatments were often harsh, antiseptic and/or caustic to the bladder, particularly silver nitrate and Clorpactin. These therapies were considered so painful that they were usually done under general anesthesia and, even so, patients reported severe discomfort afterwards. Luckily, these therapies are now rarely used for IC because we have much newer treatments available, such as a rescue instillation.
Urethral dilations were another historical therapy that patients were happy to see discontinued. In a urethral dilation, a metal rods or “sound,” was thrust into the urethra to forcibly stretch it out. I, like thousands of other women, had numerous urethral dilations as a teenager and can report that it was certainly uncomfortable. The first urination afterwards was always painful. Again, we’ve come far in thirty years. Urethral narrowing is now attributed to pelvic floor dysfunction and muscle tension thus most clinicians now prefer to use muscle relaxation to treat it. Can we have a collective “Thank goodness” for this development?
Luckily, we’ve come a long way in the past thirty years in the diagnosis and treatment of IC, not the least of which is the development of therapies which calm and soothe the bladder rather than provoke it. Case in point is the use of a rescue instillation which have the effect of numbing the bladder and reducing inflammation. A rescue instillation is the first treatment that can actually stop an IC flare in its tracks and has quickly become the most popular therapy in the USA today.
So, here’s my question for you, the IC patient. Does it make sense to do older therapies that cause profound pain when newer, more soothing therapies are available?
Your COMFORT as an IC patient should be a priority in your care. As you discuss treatments for your IC, ask your physician about therapies that will soothe your bladder and/or calm pelvic floor muscles. Certainly, changing your diet to reduce those foods that will irritate your bladder is one of the first things that you can do. Medications that reduce inflammation, such as anthistamines, make sense. Therapies that can immediately reduce pain in your bladder, aka a bladder anesthetic cocktail, are also available.
If you feel that a treatment is making you worse then, by all means, talk with your doctor about what you are experiencing. Therapies should help you live a better life and should improve your quality of life. Be vocal. Ask for options. Most of all, ask for help if you need it! – Jill O.
New IC Friendly Coffee Alternative - Roastaroma
We were walking through Whole Foods earlier this year and saw a product we'd never seen before from Celestial Seasoning - Roastaroma! Ironically, it's marketed as an herbal tea but it's probably the BEST herbal tea and/or coffee we've EVER tried.
The flavor is dynamite. Roasted chicary and barley make it very full bodied and satisfying but what makes this rise above the competition is the addition of roasted carob to the mix. Think chocolate, only more IC friendly. It also has a touch of cinnamon, allspice and anise that makes it very satisfying and palatable.
This is a perfect IC friendly alternative to that comforting cup of coffee in the morning and can make a wonderful iced coffee for the coming summer months. Honestly, it's absolutely delicious. What's surprising, though, is that Roastaroma isn't new at all. According to the box, it's been around since the 1970's and is, apparently very popular in the South. Just $4.99!
Read more or try it now in the ICN Shop!
Consumer Alert - UTI Antibiotic Nitrofurantoin Recalled
Ranbaxy Pharmaceuticals Inc. (RPI) announced May 1st that it is conducting a voluntary recall of all lots of Nitrofurantoin (Monohydrate/Macrocrystals) Capsules, USP 100 mg currently on the market in the U.S. The recall is being conducted in coordination with the FDA and will be a retail level recall. To the best of Ranbaxy's knowledge, the recalled product is unlikely to produce any serious adverse health effects. However, there is a remote possibility that the non-conforming product may increase the incidence of local non-serious gastrointestinal adverse events such as nausea and vomiting. All patients presently consuming and/or prescribed this formulation should consult their physicians for alternate and appropriate medication/treatment options.
New Bladder Friendly Recipes
His signature in our support forum says it all. "Husband of a wonderful woman who struggles with IC." ICN user CGOHEEN also rocks when it comes to cooking and adapting recipes to make them more IC friendly. We have included two of his submissions below but you'll also find recipes for smoked ribs and cheesy potato soup in the ICN Support Forum - IC Diet: Recipes and Menu Ideas Forum
Chicken and Veggie Quesadilla
Ingredients:
1 - 2 lbs of Chicken
4 tablespoons of butter
Soft Tortilla Shells (10 inches big or so)
Salt
Garlic Powder
1 -2 containers of Mushrooms ( I use sliced baby bella)
2 bell pepper
Cheese ( I have used American but what ever you can tolerate)
Instructions:
Take the chicken, pound it down to 1/2 - 3/4 inch thickness. Add salt and Garlic powder to taste. Saute until done. Set aside. Cut up Bell pepper into 2 inch slices. Cut mushrooms if needed. Add 3 tablespoons of butter to skillet and melt. Add Mushrooms and saute 10 minutes until tender. Add Bell Pepper and cook until desired tenderness. My wife likes them a little crunchy. Move veggies to separate bowl. Slice up chicken into strips.
Now on to the fun part. Put down a tortilla add chicken, then cheese, then veggies. Butter up skillet and add quesadilla to skillet to melt cheese and crisp shell. I usually do 2 at a time. Turn when the bottom has browned slightly. Repeat until you have run out of ingredients.
Comments:
I end up making this at least once a month because my wife can eat off of this for days. This is the version my wife likes the most. I have added other flavors as well. Very easy to be creative and makes a great meal for lunch.
Red Pepper Pesto Pasta Salad
Ingredients:
1 pound penne pasta or fusilli or campanelle
Salt to taste
1/4 cup ricotta cheese
1 1/4 cups roasted red peppers
1/2 cup slivered almonds , toasted (optional)
1/4 cup grated Asiago or Parmesan cheese (optional)
1/4 cup extra virgin olive oil
1 garlic clove , minced (Roasted is better, can sub powder or leave out)
2 tablespoons chopped fresh parsley leaves
4 or 5 leaves of fresh Basil
Optional Roasted Chicken
Instructions:
Start by roasting 1 - 2 peppers. To do this, I cut off the top and pull out seeds and veins and then I throw the whole pepper on the grill turning every minute or 2. The pepper is done when the skin starts to peel away on all sides.
Cook Pasta. Reserve 3/4 cup of pasta water. Drain and rinse in cold water to stop the cooking.
In a blender or food processor, puree ricotta and 2 -3 tablespoons of hot pasta water until smooth. Add 3/4 of a cup of red peppers, almonds, cheese, oil, garlic, parsley and 1/2 teaspoon of salt. Puree until smooth. Add 4 or 5 leaves of Basil to taste and puree again.
Stir into pasta adding pasta water as needed (I don't usually add much). Add remaining pepper and almost. Serve at room temp. Throw in left over or fresh roasted chicken to make it a meal.
Comments:
My wife really missed pasta salad and I found this recipe and modified it to make it IC friendly for her.
We're looking for more great Summer weather recipes, with an emphasis on light, flavorful recipes. Please share your favorites with us today in our ICN Recipe & Menu Forum.
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!
Coming Soon! Cinnamon Pear Jelly!
We're happy to announce that A Perfect Pear is now beginning to produce their wonderful Cinnamon Pear Jelly again. This delightful jelly was very popular in our store until last year when the company faced some financial difficulties.
The great news is that the owner appeared on a TV show, did spectacularly well and now has new financing for the company. Yahoo!! You can expect it in our shop this summer!
What's New in the ICN Shop
Women's Encyclopedia of Natural Medicine Many patients want to explore alternative therapies but finding a reliable resource to guide them has been very difficult, until now. Tori Hudson ND has a contributed a beautifully written book for women who would like to learn more about alternative therapies for conditions such as abnormal bleeding, endometriosis, cramping, PID and menopause. But, her chapter on IC is easily the best discussion we've ever seen, describing an in-depth protocol that she has used with success in her clinic and cites the research to back it up! If you're interested in alternative medicine, this is a MUST HAVE book. |
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Bladder Ease by Vitanica Our newest supplement, Bladder Ease by Vitanica, contains Quercetin, Glucosamine, and L-Arginine with other ingredients to provide bladder mucosa support*. Based upon the research by Dr. Tori Hudson, author of the above book, it includes several of the ingredients found in other popular supplements, but in a brand, new formula. |
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Organic Low Acid Jams Colorado Mountain Jams is our new find of the year. They make the most delightful jams that are also lower in acid that most. We're now carrying several flavors including pear, peach, spicy peach, apple pie and more. NO ADDED ACIDS! $6.49 |
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Commandos Organic These are soft, cotton pads that can be used as an underwear alternative! 100% cotton suede jersey |
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Roastaroma Herbal Tea New 06/09. See description above ! $4.99 |
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Perineal Cold Packs Some patients find that a cool sensation, as opposed to gentle heat, works to help calm and soothe their muscles and/or their perineal area after sex. These one time use perineal cold packs are the same you find in most hospitals and are often used after various examinations and procedures. Easy to activate, packs help diminish swelling and promote healing. $3.49 |
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Hint Essence Water |
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