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New IC/PBS Diet Released

(From ICN President Jill Osborne)

IC/PBS Diet GuideI am pleased to announce that after six months of work the IC Diet Ad Hoc Committee has finally finished our work to create a new, updated diet list for patients struggling with IC/PBS/HBS. The team included Julie Beyer RD (author of the Confident Choices books), Bev Laumann (author of A Taste of the Good Life: A Cookbook for an IC diet), Barbara Gordon RD (Executive Director of the ICA), diet IC researcher Barbara Shorter RD (Faculty member at Long Island University) and myself (Jill Osborne MA).

With three registered dietitians on the team, two IC cookbook authors and key leaders from the two largest IC organizations in the USA, we were determined to create the "ultimate" diet list that blended both anecdotal patient reports with the solid, valuable data gathered from the IC and diet research studies conducted at Long Island University. This new list replaces ALL previously released lists. It is much more comprehensive than previous lists, recategorizes several foods into more appropriate categories (i.e. many cheeses have been moved to the middle "Try It" column) AND provides a list of foods that we think would be soothing during your worst IC flares.

Robert Moldwin MD, author of the IC Survival Guide, offered "I am so delighted to see these new guidelines developed through the tireless efforts of the ICA and ICN. These guidelines offer guidance that is based upon scientific information, expert clinical experience and patient reports. My hat's off to the ad hoc committee. This will be of tremendous value to all of our patients."

We welcome all feedback, comments and suggestions about various foods. Please send them to: jill@ic-network.com. This list will be reviewed and updated in early 2010.

Please help us spread the word by downloading the attached list (pdf file) and bring it to your medical care providers to share this new, exciting resource with them.

Download The Diet Guide at http://www.ic-network.com/diet/2009icdietlist.pdf 

 

New CD For Men With Chronic Pelvic Pain and Prostatitis

Guided Imagery CD For Men With Pelvic Pain and ProstatitisWe are delighted to announce that a CD for men struggling with pelvic pain is now available. The third in the superb relaxation series produced by Beaumont Hospital for patients struggling with pain, this is the first that focuses specifically on the needs of men with chronic prostatitis, chronic pelvic pain and, of course, interstitial cystitis.

As with the other CD's, it features guided relaxation exercises designed to help reduce muscle tension that can be contributing to pelvic pain. This is a must try for any man struggling with pain. Previous CD's used by women have been found to be very successful in helping to reduce pain levels. It has two tracks: "Riverbank" is a basic relaxation and "Journey Into Nature" is specific for men with pelvic pain or prostatitis symptoms.

Now Available in the ICN Shop for $15

Learn more or purchase 

 

Restroom Access Card Now Available For IC, Prostatitis and Pelvic Pain

If you're like most IC patients, one of your worst fears is being in a situation where there is no restroom or, worse, someone not allowing you to use the nearest restroom. Enter the restroom access card. We've distributed thousands of cards to IC patients in the past ten years but it was time for a change. Our new design covers not only IC but also prostatitis and pelvic pain syndrome. It can be presented by patients to flight attendants, store owners and whoever else could be obstructing your use of a restroom.

In this same effort, we've also recorded a new "Living With IC" video that discusses restroom access, where to find convenient restrooms in your community and how to convince others that your need to use the restroom is legitimate.

ICN Restroom Access Card

ICN Restroom Access Card - 3 cards for $2.49

 

IC Great Debates - The Potassium Sensitivity Test

Great DebatesThis summer, Dr. Lowell Parsons (UC-San Diego) and Dr. Phil Hanno (Univ. of PA) squared off in the Journal of Urology to debate the merits of the potassium (KCL) sensitivity test. Dr. Parsons, well-known for his work with Elmiron, created the KCL test several years ago as a quick, fairly easy method of determining if a patient could have  interstitial cystitis. It works by introducing two solutions into the bladder, a water solution and a potassium solution. Water should not irritate a healthy bladder but potassium, when placed on a wound, creates discomfort. Thus, IC patients usually react and feel some discomfort when potassium is placed in their bladders. This result suggests that the bladder wall is not intact (aka damaged) and that IC is the likely suspect.

Dr. Phil Hanno has been a frequent critic of the KCL test. He correctly states that it does not differentiate between IC and other conditions of the bladder. Who is right? Read more & share your opinion.

The Latest IC Research

International Continence Society 2009 Annual Meeting

The International Continence Society brought their annual meeting to San Francisco this month, just a stones throw from the ICN offices. Several studies were released which we think you'll find interesting!

More Newly Released Research Via PubMed & UroToday

 

More IC/PBS Educational Videos

We've had an overwhelmingly positive response to our new IC "Living With IC" video series, as well as our new IC channel on YouTube. Whether it be the IC diet, understanding related conditions or just working with skeptical family or friends, we hope that the ICN Video Library will give you some new ideas and strategies.  You can also subscribe to our video channel on YouTube by visiting - http://www.youtube.com/icnjill/.

Our Video Library

Click here for our complete collection of IC videos

 

ICN Surveys - Does Cranberry Bother You? & Holiday Survival Tips

Cranberry

Cranberry & Urinary Tract Symptoms

New! Cranberry has long been reported to be irritating to patients with interstitial cystitis. We thought we'd try to set the record straight by gathering data from IC, prostatitis and other patients.

  • Does it really bother you? If so, how??
  • Which symptoms get worse??
  • Has cranberry ever helped your bladder symptoms?
  • Juice? Supplements?? Dried??

Please help us gather this info by participating in our very short, two minute survey today. 

Click here to take the survey

Holiday Coping Tips

The holiday season can be stressful for anyone. Throw in a chronic illness like IC or prostatitis that makes daily life a challenge and patients can easily feel overwhelmed. We'd appreciate your participation in this survey. We're hoping to gather some excellent holiday coping strategies, ideas and tips that can help newly diagnosed patients have a healthy and happy holiday season!

  • Has IC changed the way you celebrate your holidays?
  • What are your favorite holiday traditions?
  • Money saving ideas?
  • Making travelling during the holidays more comfortable?
  • Party  ideas?
  • Gift and shopping ideas when IC keeps you near home?
  • Favorite holiday meals and treats?

12 questions total! Should take just five minutes and, perhaps, give you some ideas for your holidays too ! Thank you for helping! Click Here to take the survey

 

Coming Events

Orthopedic Management of Pelvic Pain Course

Orthopedic Management of Pelvic Pain is a lab-based continuing education seminar (Nov. 7-8, 2009) designed for the clinician that has practical experience in the evaluation and treatment of pelvic pain conditions. it will explore, in depth, the role of sensitization, referred pain patterns and neurological convergence in pelvic pain patients, introducing a new treatment strategy that can be easily melded into your current strategy. Click Here For More Info

ICN Self Help Tip of the Month - How To Avoid Unnecessary Surgeries

Jill Osborne, ICN PresidentBy Jill Osborne MA - ICN President 

Spend any time in an IC support group and you will eventually hear the story of a patient who has undergone an unnecessary surgery because the physicians either missed a diagnosis of IC or did not believe that IC could cause severe pain. Case in point is one of my oldest IC friends, Linda. One day her IC flare was so severe that she went to a local emergency room for help. Despite her long standing diagnosis of IC and her insistence that she was having bladder pain, the physicians on duty believed that she needed to have an appendectomy. Just a few hours later, she was whisked into an emergency surgery and had a healthy, normal appendix removed.

It's a fact of life that some physicians will not know what IC is or, worse, believe that IC isn't real or can cause severe pain. I know that there are many of you today who can share similar stories of blank looks from emergency room personnel and accusations of symptoms being all in your heads. But if you feel that you've been harmed, fighting back might be the right thing to do.

Consider the story of Marine wife Angela Burch. She had suffered from pelvic pain for several years. Her urologist believed that it was the result of interstitial cystitis while her internist and OB-GYN suspected that she had endometriosis. Despite her urologists report, her other doctors insisted that hysterectomy was needed and removed her perfectly healthy uterus. She became the first IC patient that we're aware of who was awarded a two million dollar judgment for medical malpractice.

SurgerySome physicians are also trying to prevent this tragedy by raising awareness among their peers. This month, the Journal of the Society of Laparoendoscopic Surgeons published yet another paper (Early identification of interstitial cystitis may avoid unnecessary hysterectomy) strongly encouraging physicians to rule out IC before considering hysterectomy. Drs Chung and Jarnigan (Midwest Regional Center for Chronic Pelvic Pain, Ohio) conducted a literature search for articles dating back to 1990 that covered interstitial cystitis and hysterectomy. The literature review found that hysterectomy is performed more often in patients with undiagnosed interstitial cystitis than in patients with a confirmed diagnosis. In these patients, the pelvic pain did not lesson after hysterectomy and, sadly, further supported the case that the bladder was the source of the pain. Tragic indeed.

You, the IC patient, must be extremely proactive when surgery is considered. You should be asking many questions, such as:  Why is this surgery recommended? What evidence is there that proves that I need this surgery? What will the surgery involve? How many of these surgeries has the physician done?What is the success rate? What complications, if any, has the physician encountered? How long will the recovery take? Is it covered by your insurance?

Bringing a family member or friend along with you to any appointments discussing surgery is ideal. They can help you ask questions and, after the appointment, help you review what the doctor said and be a sounding board. I firmly believe that if Linda had had a family member along, the emergency room might have been more receptive to her history of IC and bladder pain.

Second opinions are also vital. If you have any doubts about a surgical recommendation, getting a second opinion from another medical professional is vital. ICN member Carol was scheduled to have her bladder removed. Luckily, her physician suggested that she get a second opinion from a major IC research center. The second urologist discovered that her bladder was actually in fairly good shape and certainly not needing removal. Her pelvic pain was coming from severe pelvic floor dysfunction. Her surgery was cancelled and physical therapy was scheduled shortly thereafter.

It can be very helpful to talk with other patients who have had the same surgery. You want to hear not only success stories, but also difficulties that patients may have faced in their recovery. The ICN also has several discussion boards in our support forum dedicated to sacral neuromodulation, bladder removal, botox and other therapies where you can reach out to patients for their real life experience with a procedure.

Take some time to educate yourself about the proposed surgery not only with literature or videos that your physician might provide but also on the web. There are several web sites online that offer extensive discussions of surgeries, including some videos for those of you not faint of heart. I particularly like our US government web sites, including the National Institutes of Health, the National Library of Medicine (Pub Med) and the FDA.

If, for example, you are considering a bladder suspension surgery, you can research the various slings and their surgical results via Pub Med. 

The FDA has a record of complications (the MAUDE database) experienced by patients who are having medical devices implanted, such as sacral neuromodulation. These are worth browsing through. MRSA infections are consistently found in those reports relating to Interstim thus, as a patient, you might want to ask the surgeon if he has seen MRSA infections in his hospital or clinic and what procedures he uses to prevent them.

I want you to be informed, strong, confident and proactive when you seek medical care. Stand up straight. Look your physician in the eyes. Don't be afraid to ask "Is this surgery necessary??" If yes, then ask "Why?" As always, if you have any questions, comments or ideas, please send them to me directly at: jill@ic-network.com.


We're Looking For Medical Care Provider Recommendations

ICN Locate an Medical Care ProviderWith 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.

Click here to search our database

Click here for our doctor recommendation form!

 

Consumer Alert  - Heparin

FDA

New Standards for Heparin Announced - Dosage Adjustments May Be Needed

Heparin is often used in various bladder instillations used for IC therapies both in doctors offices and also by patients at home. Because of the huge recall last year, we think its important to notify patients of heparin related announcements. Your dosage of heparin may need to be adjusted. The U.S. Food and Drug Administration alerted health care professionals to a change in heparin manufacturing that is expected to decrease the potency of the common anti-clotting drug. 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.

Pan Sauteed Pasta - ICN Member krisillis

Boil enough Bow Tie or Cork Screw pasta to feed 2 people, drain in a rack and then toss in a bowl with 1 tbsp olive oil and oregano or other favorite spice. Set aside to cool.

Chop and slice your favorite IC veggies. I use red onions, celery, zucchini, carrots, garlic and red pepper.

Saute onion, garlic and red pepper in the pan. Add the rest of the veggies and a tsp to tbsp of oregano (or your fav. spice). Toss and cover 3 min's. Add pasta, stir and cover another 3 until pasta is heated. Serve as is or with a meat dish like chicken or fish.

APPLE OATMEAL PANCAKES - ICN Member Goldfinch

The night before: Mix 1.25 cups low-fat buttermilk with 2/3 cup of regular oat flakes (not instant or quick-cook.) Cover with/plastic wrap and stash in the fridge.

Morning: Peel and grate 1 small apple, whatever kind you like or whatever you have. Squeeze out most of the moisture, and pack down to get 2/3 cup. In a large mixing bowl beat or whisk one egg, and then whisk in 2 T light brown sugar. Stir in the grated apple.

In a separate small bowl, mix dry ingredients: 8 T white flour, 4 T whole wheat flour (or you can up the % of whole wheat flour if you like), 1 tsp baking soda, 1/2 tsp salt, 1/4 tsp or less cinnamon * (opt). Add this to the egg/apple mix, along with 2 T vegetable oil (I use corn, but whatever), and the overnight mix of buttermilk and oats. Combine well; you may want to add a little more buttermilk if it seems very thick, which is what I usually do. Cook the pancakes on a greased skillet for 1 or 2 minutes on each side until golden brown, and serve with /real maple syrup. Would be good with blueberry syrup, too.

Try swapping the apple with a firm pear if apple bothers your bladder.

WANTED! Holiday Recipe Suggestions

We're looking for some new, exciting holiday recipes that will help patients enjoy a tasty holiday meal. Whether it's for Thanksgiving, Hannukah, Christmas or new years, we want recipes for appetizers, main courses, veggies and, of course, your favorite holiday desserts and cookies! 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

Tylers CoffeeTyler'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!

Comes in small bags that make 18 cups per bag. - Learn More Or Purchase

What's New in the ICN Shop

Roastaroma
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!

Learn More or Purchase
Roastaroma

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.

Learn More or Purchase

Women's Encyclopedia of Natural Medicine

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.

Learn More or Purchase
Bladder Ease

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 than most. We're now carrying several flavors including pear, peach, spicy peach, apple pie and more. NO ADDED ACIDS! $6.49

Learn More or Purchase!
Pear Jam

Commandos Organic

These are soft, cotton pads that can be used as an underwear alternative!

100% cotton suede jersey

Learn More Or Purchase
Commandos

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

Learn More or Purchase
Peri Cold Pack

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