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ICN Survey Center - Could Medical Cannabis Reduce Bladder Pain?

ICn Survey CenterEarlier this Spring, researchers from the University of California’s Center for Medicinal Cannabis Research (CMCR) released a thought provoking report for the State of California legislature which found "reasonable evidence that cannabis is a promising treatment for some specific, pain-related medical conditions."

Five completed and published scientific studies showed that cannabis eased the pain caused by injury or diseases of the nervous system and possibly for painful muscle spasms. CMCR director, Igor Grant, MD, Executive Vice-Chair of the Department of Psychiatry at the UCSD School of Medicine, said "These findings provide a strong, science-based context in which policy makers and the public can begin discussing the place of cannabis in medical care.” (Read the UCSD State of California Report)

Now, of course, the use of marijuana is certainly controversial. Some states support the medical use of marijuana for treating various medical conditions while others still consider it a crime. Patients also have strong and diverse opinions. In a recent IC discussion on Facebook, one patient suggested that using MJ was simply an excuse to get high while several others reported that it had helped control their pain and bladder symptoms without the difficult side effects of pain medication. Surprising? Not really!

In 2007, IC researcher Michael Chancellor and colleagues at the Univ. of Pittsburgh School of Medicine released an animal study which showed that ajulemic acid (IP-751) has some action in the bladder. A synthetic analog of tetrahydrocannabinol, IP-751 was found to suppress urinary frequency via cannabinoid receptors. (Read the abstract)

This opens up several interesting questions. Could medical cannabis be helpful for patients struggling with pelvic pain and IC? Does it help with frequency? Urgency? Pressure?? Pain? Or, does it trigger flares? We simply don't know because no study has been done as yet.

So, we thought we'd ask patients in an ANONYMOUS SURVEY what their experience has been. If there's a chance that it can help patients struggling with pain and/or remove the typical side effects of pain medication (i.e. severe constipation), perhaps we should try to support a research study to explore this further. If you have used or currently use medical marijuana, please share your experience with us. Click here to take the ICN medical marijuana survey!

 

New Videos Worth Watching

Jill Osborne~ The Estrogen Chat For Women With IC

Do you notice that your IC symptoms flare with your menstrual cycle? IC patients are often surprised to learn that the bladder is extremely hormone sensitive. ICN President Jill Osborne explains why estrogen is important, how it can trigger a bladder flare and options that you can use to replenish estrogen. If you've had a hysterectomy or are facing menopause, this video can help!  Watch it at: http://www.youtube.com/watch?v=Drvr_8rt19c

~ A Doctor With Prostatitis Speaks out!

Nick Muff MDDr. Nick Muff offers a surprisingly candid and touching account of his 13-year history of chronic prostatitis. He shares how he was poorly treated by various medical care providers who did not seem to care about his discomfort. How he struggled to continue to practice medicine despite severe prostate pain and symptoms. He discusses the many treatments he explored, including antibiotics, massage, injections, and why, in his case, surgery has given him his life back. While this video isn't specifically about IC, many of the experiences that he goes through are very similar to what we have experienced.  Watch it at: http://vimeo.com/12780460

Robert Evans~ Dr. Robert Evans Talks About IC on WXII12's Noon News

Long time IC advocate and specialist , Dr. Robert Evans, appeared on TV in June to discuss IC. Now practicing at Wake Forest University, he emphasizes that patients who seem to be struggling with a UTI but have negative cultures should seek additional care from their physicians to rule out interstitial cystitis as a potential cause. He said "We feel we can help just about everyone. We can make a significant difference in their quality of life."  Watch it now at: http://news.yahoo.com/video/greensboro-wxii-18191235/20300036

 

The Latest Research

~ Bacteria Not Linked to IC Flares & Antibiotics Found To Be Ineffective

Researchers Curtis Nickel MD (Queens Univ. ON) and Dan Shoskes (Cleveland Clinic OH) released the data from a two year study of one hundred patients. Their goal was to determine if bacteria in urine was linked to the onset of IC flares. The results suggest "no." Yes, 31% of patients had at least one positive urine culture in the two year study but it was not associated with any change, or worsening, of her bladder symptoms. In addition, they determined that antibiotic therapy was not helpful in reducing IC symptoms. Read the abstract!

Source: Nickel JC, Shoskes DA, Irvine-Bird K. Prevalence and impact of bacteriuria and/or urinary tract infection in interstitial cystitis/painful bladder syndrome Urology. 2010 Jun 21

~ Vitamin D May Help Prevent Pelvic Floor Dysfunction

Twenty three percent of the women participating in the  large 2005/2006 National Health and Nutrition Examination Survey reported that they had one or more pelvic floor disorders. What made this study fascinating was the finding that these women had unusually low Vitamin D levels. Further research determined that women with normal levels of Vitamin D had fewer pelvic floor problems and that the likelihood of developing urinary incontinence was dramatically reduced in women age 50 and older if they had at least 30 ng/mL of Vitamin D or higher. Read the abstract!

Source: Badalian SS, Rosenbaum PF Vitamin D and pelvic floor disorders in women: results from the National Health and Nutrition Examination Survey. Obstet Gynecol. 2010 Apr;115(4):795-803

~ Study Shows Chamomile Capsules Ease Anxiety Symptoms

Given that IC patients so often struggle with anxiety, we thought you'd find this study fascinating! Researchers funded by NCCAM conducted the first study testing chamomile extract in the treatment of anxiety disorder. For 8 weeks, 57 participants received either chamomile or a placebo. Patients taking chamomile reported statistically significant drops in their anxiety levels, suggesting that it may be helpful for mild to moderate anxiety disorders. Luckily, chamomile is also IC friendly!  Read the abstract!

Source: Amsterdam JD, Yimei L, Soeller I, et al. A randomized, double-blind, placebo-controlled trial of oral Matricaria recutita (chamomile) extract therapy for generalized anxiety disorder. Journal of Clinical Psychopharmacology. 2009;29(4):378–382

 

Consumer Alerts

~ Increased Risk of Bone Fractures With Nexium, Prilosec & Other Antacid Medications.

The alert caught our attention because some IC patients struggle with GERD and use antacids. The FDA has reviewed seven studies which reported an increase risk of fractures of the hip, wrist and spine with the use of certain antacid medications known as proton pump inhibitors (PPI). The greatest increased risk for these fractures was seen in those who receive high doses of these medications or use them for a year or longer. A PPI helps to reduce acid in the stomach. Products under review include various over the counter products (i.e. Prilosec, Prevacid, Zegerid) or by prescription (Nexium, Prilosec, Dexilant, Zegerid, Prevacid, Protonix, Aciphex and Vimovo). Read FDA report and recommendations.

~ Benadryl, Motrin & Tylenol Recall Expanded Last Week

If you've visited the pain reliever section of your supermarket in the last month, you'll notice that very few Tylenol products are on the shelves. Why? Last January, customers reported a strong musty or moldy odor in the packaging. Several recalls have since been launched, the latest expansion occurring last week.  Medications involved in the recall include: Benadryl Allergy Ultratab, Children's Tylenol Meltaways, Tylenol Extra Strength, Tylenol PM. Read more and review the lot numbers!

 

Patient to Patient: Hot Topics In Our 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.

Reaching Airlines:

Just had a truly awful story relayed to me about an IC patient who was stuck on the tarmac on a plane for four hours and was not allowed to use the restroom. Unconscionable and absolutely agonizing for the patient who has sobbing in pain. I'm wondering what we can do to educate airline flight attendants about the desperate need for IC patients to urinate. Honestly, were it me... I would be up in the aisle.... and demanding to use the restroom. In her case, the flight attendant said "You don't want the plane to have to go back to the gate do you?"... shocking... infuriating... and agonizing. Read more and/or respond

 

Is your IC pain in your lower abdomen or in your urethra? 

I am trying to understand when talking about pain, do most of you feel it in your abdomen or urethra. I never feel abdominal pain, only discomfort that seems like its coming from inside the urethra I do have some frequency and urgency but its not terrible. It just seems like most experience pain or discomfort from the abdomen if they do have pain. Does diet still seem to help if you have urethral pain and/or abdominal pain? I just want to know too if when you talk about "bladder pain" do you mean strictly in the abdomen or the whole pelvic area? Read more and/or respond

 

Is it the milk or the cereal triggering an IC flare?
Does anyone else seem to have problems with milk? The only time I really drink it is when I have cereal in the morning. Yesterday, and many other times, it set off a 2 hour frequency flare, though it seems to be ok according to the IC diet. Does anyone else have this issue? If so, what kind of milk would you recommend? I tried rice milk, but I didn't see much change. I know soy is a big no-no, so what's left? . Read more and/or respond



ICN Classes & Workshops Next Week

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!

Introduction to the IC Diet - Mon. July 19

This course will offer an in depth review of the role of diet and IC. It will explain why foods can irritate an IC bladder and review those foods which are the most notorious for triggering bladder pain and discomfort. We'll be sharing the latest IC Food List and offering strategies on how to approach the diet for the first time. There's no reason for you to be afraid to eat. You simply need to know which foods cause the most problems. Wondering what you can eat when you go out?? We'll share restaurant and shopping ideas as well! - Instructor Julie Beyer RD

Newly Diagnosed & IC Treatments - Mon. July 26

Are you newly diagnosed with interstitial cystitis?? Not sure what a flare is?? Confused about diagnosis or treatment?? Then this one hour orientation is for you. We'll explain what IC is, how it's diagnosed, conservative and alternative treatments and the most effective self help strategies that you can use, today, to gain control over your symptoms . - Instructor Jill Osborne MA

imageMaking Peace with Stress and IC - Tues. July 27

There is no doubt that stress can trigger IC symptoms, yet life is full of stress. In this workshop taught by dietitian and health educator, Julie Beyer, you will not only learn what stress is and how it can affect your symptoms, but you will learn coping skills to reduce the effects of stress on your body. - Instructor Julie Beyer RD

 

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

 

Fresh Tastes by Bev - Bladder Friendly Mexican Cuisine

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!

Bladder Friendly Mexican Cuisine

Bev LaumannTwelve years ago, when I was first diagnosed with IC, I wasn't sure there was a connection between what I ate and how my bladder felt. But when the light finally dawned on me that what I was eating may be a problem, one of the first connections I made was the one between spicy hot Mexican food and sleepless nights in the bathroom. The realization that my favorite foods were triggering bladder pain was really depressing. And I especially hated the idea of giving up Mexican food. I love Mexican food and so does my whole family.

Mexican cuisine is not just one cuisine, but many. Not unlike regional styles in the U.S., each province of Mexico has its own specialties and its own way of preparing traditional foods. Chiapas, Chihuahua, and Oaxaca for instance are famous for their great variety of cheeses and cheese dishes. The Spanish brought dairy products and new spices to Mexico and changed forever the diet and culture there. Spices such as cinnamon, which are used extensively in Mexican cooking, are also favorites in Spain. The resourceful Mexicans gave Spanish food a new twist and thus we have a wide variety of tasty Mexican sausages, called chorizo, which often are spiced with native chile peppers. Then too, its proximity to the United States has greatly influenced modern Mexican cooking just as Mexican cooking has influenced that of the southwestern U.S. Recently, blend of Southern U.S. cooking and that of Mexico has created a new food fad for Americans-- Tex-Mex.

All the variations of Mexican cooking though include foods that are unique to the Americas-- ones eaten by the native population centuries before the Europeans arrived. Chile peppers, vanilla, and chocolate are chief among the native American contributions to Mexican cooking and are used extensively in all regions of Mexico. Corn is a staple of the diet throughout Mexico much as wheat is in the United States and Europe. Despite frequently containing tropical fruits, tomatoes, and chile peppers, not all Mexican food is off-limits to those with tender bladders or delicate stomachs. Wonderful stews, chicken dishes, cheese dishes and desserts are easily adaptable for Americans with IC.

Read more and find her recipes on Orange Chicken Oaxaca and Mexican Coconut Flan

 

Fun Summer IC Friendly Recipes

Here are some of the recipes submitted or suggested by IC patients in the ICN Recipe Forums! You can find many more recipes on our website in our free IC Chef Cookbook and the Fresh Tastes by Bev feature columns. Enjoy and keep them coming!

Scrambled Eggs with Vegetables

Root beer Cream Salad Dressing

Potato Salad With Creamy Dill Dressing

Macaroni Salad with Creamy Dressing

Portabella Mushroom Chicken

Costa Rican Zapallitos Rellenos

White Chocolate Blueberry Cookies

 

IC Friendly Cool Drink Contest - Two more weeks for recipes

Just two weeks left! We still need your recipes for cool, refreshing and IC friendly drinks for the brutally hot days of summer. Winners will get some very sizable gift certificates for their submitted entries.

Categories

(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

Learn more or submit your recipes!


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

~ Participate in ICN Support Chats Via iPhone and iPad

ParaChat iPhone App

We're pleased to announce that the ICN Chat Room & monthly support chats are now available via iPhone and, soon, the iPad. Our chat room service, Parachat, has recently released applications for iPhone and iPad accessibility that you can download!

Click here to download the app!

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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!

* Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships

Available in mid August 2010 through the ICN Shop.

There's no doubt that IC and any other pelvic pain disorders can create stress in our relationships and awkwardness in the bedroom. If you're one of the many women struggling, you will find this book very helpful.

Written by Susan Bilheimer and pelvic pain specialist Robert Echenberg MD, it is chock full of useful information and suggestions. It not only affirms that challenges and insecurities that patients struggle with, but also covers the husbands point of view, the dilemma confronting single women with chronic pain and the poignant stories of two men who experience sexual pain. It offers great hope as well!! The appendix offers 64 excellent tips that can help relieve sexual and pelvic pain!

Reserve your advance copy today by calling our shop at: (707)433-0413.

* Introducing Christina's Garden, a new line of custom scented microwaveable heating pads.

Christinas Garden Heating PadsDeveloped exclusively for the ICN for bladder & pelvic pain patients, this 100% cotton flannel microwaveable 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.

Three scents & unscented pads are available, including:  organic chamomile, organic peppermint, organic cinnamon, cloves and orange peel or unscented. Various patterns and colors available.

Learn more about it!

* New IC Friendly Summer Snack - Larabars Mini's

Larabar MinisHumm Foods, the creator of LÄRABAR, firmly believes that the foundation of a healthy mind, body and spirit is derived from what you eat. And what you eat is healthiest and most satisfying when it's in a whole, natural state.  LÄRABAR is a delicious blend of unsweetened fruits, nuts and spices — energy in its purest form. Made from 100% whole, raw food, each flavor contains no more than 2 to 6 ingredients. Pure and simple, just as nature intended. Uncooked, Unprocessed, No Added Sugars, Non-Irradiated, Non-GMO, Preservative-Free, Sulfite-Free, Gluten-Free, Dairy-Free, Soy-Free, Corn-Free, Vegan, Kosher. 

Several flavors available including: Apple Pie, Cashew Cookie & Cherry Pie

Learn More About It

* Prelief - 300 count

PreliefFoods 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.

Learn more or purchase

 

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