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Winter 2011 IC Optimist Now Available

ICN Subscribers should received the newest issue of the IC Optimist, the ICN's quarterly magazine for our subscribers, in early January! In this expanded issue:

2011 IC Optimist 2011 Guide to Managing IC Flares

We begin 2011 with an issue dedicated entirely to managing IC flares, the bane of many an IC patient. This issue will give you practical, easy tips that you can use to manage and prevent the most common IC flares, including new hour by hour customized "rescue plans" that you can use to control your symptoms and, we hope, reduce the length of your flares. If you're uncertain about what a flare is or what you can do to manage and prevent them, this guide is a must read!!!

  • Anatomy of an IC Flare - Describes the types of flares that occur, their symptoms, why they occur, etc. Also discusses how to determine if it could be a UTI rather than a flare.
  • Rescue Plan #1 - Bladder Wall Flares - Offers an hour by hour plan to help you soothe your bladder wall, dilute your urine, use medications and other therapies to help manage pain and discomfort.
  • Rescue Plan #2 - Pelvic Floor Flares - Offers an hour by hour plan to help you reduce muscle tension using heat, stretching, exercises, tapes, physical therapy and medications.
  • The Most Common Flare Triggers - We describe those things which are the most well known for triggering flares, including foods, hormones, traveling/driving, stress, chemical exposure, sex and intimacy with practical suggestions on how to avoid or minimize them.
  • In Sickness and In Health: the Critical Role Spouses Play
    IC writer Stacey Shannon shares the latest research about spousal support and several patient stories. It turns out thast spouses that are "distracting" are, by far, the most helpful.
  • Decreasing Bladder Pain Naturally
    Physical Therapist Isa Herrera, author of the book Ending Female Pain: A Woman's Manual, shares her top tips for managing bladder pain naturally. Her common sense suggestions are easy to implement and make sense.
  • Comfort Foods During Flares
    At the time when many IC patients are reluctant to eat for fear of irritating their bladders, we offer dozens of recipes of bladder friendly foods that you should be able to enjoy in "Comfort Foods During IC Flares." From breakfast ideas to lunches, pasta ideas to main courses and desserts, we're sure you'll find some recipes that you can enjoy even when your bladder is flaring.

Click here to become a subscriber

Click here to buy an individual copy.

 

The Year In Review - The Top Ten IC Stories of 2010

(By Jill Osborne MA., ICN President) Here's my list of the most important IC stories or events from 2010! We ran the gamut of emotion from disappointment to exciting success. There's no doubt that we have committed researchers seeking a cure, advocacy groups lobbying for additional research, authors creating new books and, most importantly, patient activists taking charge of their destiny by raising awareness and spreading the word that IC is real and treatable. Do you agree or disagree with my list? Did I miss something? Send me an email at: jill@ic-network.com.

FireworkGeneric, Affordable Elmiron? - The patent for Elmiron expired in early January 2010, thus opening up the opportunity for it to be produced in a lower cost, generic form. Stay tuned in 2011 for some exciting news! - Read more

Dietitians Get Educated - Interstitial Cystitis : A Guide For Nutrition Educators was released last March. Written by prolific IC author and registered dietitian Julie Beyer, this marks the first time that comprehensive information on IC and how diet impacts our bladder symptoms was released to nutrition professionals around the country. Throughout 2010, Julie visited conferences and events around the USA to share this vital news for IC patients. We applaud her efforts! - Read more

Colloidal Silver Named Most Dangerous Supplement - In the past twenty years, colloidal silver has been heavily promoted to IC patients seeking alternative therapies without a single study showing effectiveness in the treatment of IC.. In 2010, it was named one of the most dangerous supplements by Consumer Reports with possible life threatening side effects. Beware false cures! Read more!

Two Clinical Trials Halted - Two key IC clinical trials were halted this year. The Uracyst pilot trial had hoped to develop data to support FDA approval. Sadly, the results were not ideal. Read more

Pfizer had great hopes for the medication Tanezumab in treating pain conditions. Unfortunately, some patients participating in chronic low back pain and diabetic neuropathy trials developed osteoarthritis requiring joint replacement. The newly launched trial studying Tanezumab's ability to fight bladder pain was suspended at the same time. Read more

Medical Marijuana Debate Progresses - If we can take out the component of marijuana that makes people "high" and isolate the pain fighting ingredients would that be a legitimate use for mj? This was our debate point in the last issue of the IC Optimist magazine, revealing several new and promising studies including a synthetic cannabinoid MDA19 that may provide effective pain relief WITHOUT the mental and physical side effects of cannabis as well as a possible new bladder treatment that is currently under development. - Read more

The Status Quo Is Not Good Enough - "You should not tell a man with pain between his nipples and knees that he has prostatitis without doing a proper history and physical examination" is just one of the twenty three points that Urologist Dan Shoskes makes in one of the best essays of the year. Yes, he's talking about prostatitis but many of his points apply to IC as well! Read more

Vitamin D May Help Prevent Pelvic Floor Dysfunction - A study released in June 2010 found that women struggling with pelvic floor disorders had significantly lower Vitamin D levels, as well as higher incontinence levels. The authors concluded that higher Vitamin D levels are associated with a decreased risk of PFD. - Read more

Physical Therapy Found To Be Successful In National Study - At May's AUA 2010 conference, Dr. Christopher Payne announced the results of a multi center randomized trial of physical therapy in the treatment of IC which represents the first true success of a federally funded IC treatment study. It proved that physical therapy can and will improve the symptoms of some patients. - Read more

IC Awareness Month - The first month long awareness campaign dedicated to IC set the stage for years to come with new media stories, social networking awareness projects, videos and a proclamation campaign that had city mayors and state governors dedicating a day to IC awareness. - Read more

AUA Clinical Guidelines Released for IC - The highlight of the year was the release of the new American guidelines on interstitial cystitis that offers a new five step protocol for treatment. Read more at: Read more

The Latest IC Research

ICN Research LibraryIf you have any doubt about the future of the IC movement, look no further than at the new, dynamic research that is produced each month on new therapies, diagnostic methods and, of course, the potential causes of IC. We've chosen to highlight studies and papers that we think are particularly interesting.

Myofascial Pain & Trigger Points Common in IC Patients

A study from the University of South Florida has shed light on the incidence of painful pelvic floor trigger points in diagnosed IC patients. A retrospective chart review was performed on 186 patients with a diagnosis of IC from April 2007 to December 2008. Myofascial pain was demonstrated in 78.3% of IC patients with at least one myofascial trigger point, and 67.9% of patients had numerous areas of trigger points. These findings reinforce the notion that IC patients should also be assessed for pelvic floor dysfunction and the presence of painful muscle trigger points and be referred for treatment, as needed.

Source: Bassaly R et. al. Myofascial pain and PFD in patients with IC. Int Urogynecol J Pelvic Floor Dysfunct. 2010 Oct 26

Long-term Results of Intravesical Hyaluronan Therapy Excellent

Researcher Paul Engelhardt and colleagues shared the remarkable results of a five year follow up study of patients treated with intravesical hyaluronan, also known as Cystistat (Bioniche, Galway IR). Available for use for the treatment of IC/BPS in Europe and Canada, hyaluronan is believed to help the IC bladder by reinforcing bladder barrier function as well as some potential anti-inflammatory mechanisms of action. In this study, they contacted a group of patients who had previously undergone intravesical hyaluronan therapy in their clinic to determine how they were doing. 48 of 70 patients responded, with an average age of 48.3 years. They had an average of 11.8 instillations of medication.

Fifty percent of responding patients reported that they were free of bladder symptoms after their first course of treatment and remained symptom free, requiring no additional therapy. 25% of patients experienced a recurrence of their bladder symptoms and underwent additional treatment with hyaluronan. 16.7% experienced recurrrences and were treated with both hyaluronan and pentosan polysulfate (aka Elmiron). Only 8.3% of patients did not respond to treatment.

A whopping 85% of these patients experienced an improvement in their symptoms. Why? It may be how the patients were selected for treatment and how many treatments were used. For example, patients had to be able to hold the instillation for two hours to participate. Patients had to be treatment naive which means that they had not used other therapies. They also had an average of 12 treatments which is considerably higher than the normal schedule of four weekly treatments followed by 2 to 4 monthly treatments.

The authors concluded "Besides a high rate of acute symptom remission, intravesical hyaluronan also shows long-term efficacy in a considerable number of BPS/IC patients that suggests that some patients may be cured by this therapy. Patients with symptom recurrence after instillation therapy have a high chance for symptom remission with hyaluronan maintenance therapy." While the durability of the treatment response demonstrated in this study is excellent, cystistat has yet to be approved for use in the USA. Additional studies to verify these results are clearly necessary. Thought provoking indeed!

Source: Dr. Paul F. Engelhardt, FEBU, et al. Long-term results of intravesical hyaluronan therapy in bladder pain syndrome/interstitial cystitis. UroToday Beyond The Abstract Column - December9, 2010 - http://www.urotoday.com

Intravesical DMSO Appears To Inhibit Inflammation In The Mouse Bladder

Researchers at Northwestern University (Chicago, IL) have developed a potential new animal model for the study of interstitial cystitis, URO-OVA mice whose bladders appear to mimic IC. Earlier this year, they studied mice that had been treated with intravesical DMSO and found that " the bladders treated with 50% DMSO exhibited markedly reduced bladder histopathology and expression of various inflammatory factor mRNAs." This comes as no surprise as DMSO has long been thought to have anti-inflammatory properties though we remain cautious about its use in a human population at a 50% dosage when studies by C. Subah Packer found that that dosage could trigger severe and irreversible muscle spasms. Food for thought.

Source: Kim R. et al. Intravesical dimethyl sulfoxide inhibits acute and chronic bladder inflammation in transgenic experimental autoimmune cystitis models. J Biomed Biotechnol. 2011;2011:937061.

Other Articles of Interest

New Articles & Blog Entries Worth Reading

 

IC Clinical Trial Seeking Participants For Pain Study

mother and duaghterDO YOU SUFFER FROM INTERSTITIAL CYSTITIS AND/OR PAINFUL BLADDER SYNDROME? If so, consider this research opportunity.

We (Johnson & Johnson) are currently enrolling volunteers for a clinical research trial that is studying the safety and effectiveness of an investigational medication to see if it can help to reduce chronic pain associated with interstitial cystitis and/or painful bladder syndrome.

You may be eligible to participate in the pain study if you:

  • Are male or female, 18 - 80 years of age (women cannot be pregnant, planning to become pregnant or breast-feeding)
  • Have had moderate to severe, chronic bladder pain for at least six months accompanied by any of the following:
  • Frequent urination
  • Urgent urination
  • Frequent night urination
  • Additional criteria will be assessed by the study doctor to confirm your eligibility for this study.

If eligible to participate, you will

  • Be seen by a study doctor
  • Receive study-related testing and study medication at no cost.

The Study Is Now Enrolling. For more information please visit www.urinarypainstudy.com

 

Patient to Patient: The ICN Support Forum

Support ServicesThe 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

Newly Diagnosed with IC

IC Success Stories

My IC is in Remission

Men With IC

Teens With IC

College Students With IC

Cystoscopy and Hydrodistention

Elmiron

Rescue Instillations

DMSO

Neuromodulation: Considering It?

Botox

General Diet Questions

PMS, Perimenopause & Menopause

Estrogen & Hormone Replacement

Exercise & Fitness

Social Security Disability

Help! I'm in an IC Flare

Considering Pregnancy

Meet Other Patients In Your State

 

Fresh Tastes by Bev - Help For Painful Gas & Bloating

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!

Stomach AcheThe unpleasant sensations of abdominal gas and bloating are a minor but common human misery that everybody gets now and then. Just check how many feet of shelf space at the drugstore are taken up with "anti-gas" remedies. But for some people, intestinal gas can be not only uncomfortable and embarrassing, it can be downright excruciating. And what's worse for people with IC, intestinal trouble may provoke our sensitive bladder.

Relieving the trouble starts with figuring out what's at the root of the situation, but of course like so many things relating to IC, that's easier said than done. It's yet another situation where "each person is a bit different" and one approach doesn't fit all. Happily however, once we've identified the cause, relief is often surprisingly easy to come by. Doctors know that unlike pain in an arm or leg, visceral abdominal pain is often hard for patients to pinpoint. It may seem to spread from one area to another or be "all over" the whole pelvic area. What's even more confusing for patients, pelvic pain can be "referred" from one site to another. For instance, sometimes IC patients feel bladder flare-ups as an ache in their lower back-- an excellent example of how pain is "referred" from one area of the pelvis to another. Once we've had IC for awhile though, we get to know our body well and can ace out when the culprit is our bladder, and when it isn't.

Read the full article by clicking here

 

We're Looking For MD & PT Recommendations in Canada & USA

ICN Locate an Medical Care Provider 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!

NEW!!! Confident Choices: Customizing the IC Diet, 2nd edition

Confident ChoicesCustomizing the Interstitial Cystitis Diet answers the plea, "Just tell me what to eat!" We now know that up to 11 million people suffer from IC. We also have validation that dietary modification can work to alleviate some of the symptoms of IC, in fact over 90% of patients say that diet affects their symptoms, and changing what they eat and drink can help! However, unlike dietary recommendations for other health conditions, the IC diet is more than just a good food/bad food list. Each patient is individual and just as each responds to different treatments, each patient will have a unique pattern of food triggers.

Customizing the Interstitial Cystitis Diet guides patients through a process to determine their personal trigger foods while maintaining nutrition. Fifteen chapters cover a variety of topics including flare foods, discovering your trigger foods, planning meals, ideas for breakfast, lunch and dinner, some IC friendly recipes, dietary supplements, exercise & fitness and IC diet success stories.

The Confident Choices book series are written by Julie Beyer RD, a registered dietiaalso provides personal dietician consulting services to IC patients around the country.

Learn more or purchase here!

The Happy Bladder Cookbook

The Happy Bladder CookbookWritten 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!

Learn more or purchase here

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.

Christinas Garden Heating PadsThree scents & unscented pads are available, including:

  • organic chamomile
  • organic peppermint
  • organic cinnamon, cloves and orange peel
  • unscented.

Various patterns and colors available.

Learn more about it!

 

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