May 2013 - ICN E-Newsletter
Trouble reading this e-mail?? Read it online here!
Happy Father's Day
The happiest of Father's Days to those remarkable men who held gave us their strength when we were feeling weak, who offered a hug when we needed comfort, who stepped forward and asked "what can I do" when we felt as if we couldn't finish a single task. Whether you are a dad with IC or the father of an IC patient, we HONOR you for the many gifts that you've given to your families and friends! - Jill O. :)
Take the 2013 Facebook IC Challenge!
We "double dog dare" you to take the 2013 FACEBOOK IC Challenge!
- Do you really know your facts about IC?
- Do you know what causes flare?
- Do you know how IC is diagnosed today, in 2013?
- Which popular restaurant chain is hard on the bladder yet has excellent and easily accessible bathrooms??
You must be a Facebook member to participate. This quiz is fun, educational and eye opening! Tablet and phone friendly! Take it here!
Low Acid Multivitamin Getting Great Reviews
- Yes, I bought them about a month ago, and have been taking them daily. No problem so far! My ophthalmologist will be happy!" - DD
- I bought it as soon as it came out! I love it. I have no trouble!" - SC
- I've been using it and it has worked well for me... Thanks" - MG
- I've been taking the multi for awhile now with no flares." - AB
Six weeks ago Farr Laboratories launched MultiRight Multivitamin Complex, a new "Low Acid" Multivitamin designed specifically for people who struggle with acid sensitivity. The great news is that it's getting rave reviews! We've only had one patient call to report that it irritated their bladders out of the hundreds of bottles sold! So, if you're looking for a multivitamin, we think this is worth trying. It's very affordable at just $6 per month!
Conference News & Updates
June 29, 2013 - Empowering IC Patients with Knowledge & Hope -
ICA Philadelphia Forum Will Be Webcast Live
If you live in the Philadelphia area, you can attend this patient conference live but if you don't, take heart, you can also watch it live on the web FOR FREE! Excellent speakers including Amy Stein PT, Rob Moldwin MD, Daniel Carr MD, Chris Mullins (NIDDK), Barbara Shorter RD, and a section on "When Standard Treatments Fail" that should be quite interesting! Register at: http://www.ichelp.org/patientforum
NIH Pain Consortium Symposium
Earlier this month, the NIH brought together many of the best and brightest minds in pain research and treatment for their annual pain symposium. The highlight, for us, was the first speaker of the second day, Penny Cowan, founder of the American Chronic Pain Association who gave a rousing presentation from the patient perspective. Watch her presentation - Day 2 - Watch Day 1
First World Conference for Abdominal & Pelvic Pain Conference
The First World Conference for Abdominal & Pelvic Pain Conference was held in Amsterdam earlier this spring uniting more than 500 professionals from more than 40 nations to share their thoughts, insights, research and treatment strategies. A number of research studies were presented that we'll be reviewing in depth in our Summer IC Optimist. The conference was set up beautifully for internet access and has a number of videos that you can watch!
ICN Survey Center - A Doctoral Candidate Needs Your Help!
The Influence of Psychological Factors in IC
In a brief five minute survey, you can help graduate student Mumta Purohit (Argosy University-Washington DC) earn her degree. For her doctoral project, she is studying how IC patients manage their pain and symptoms, specifically how we cope (acceptance, mindfulness, and experiential avoidance).
She is passionate about studying IC, was a blast to talk with on the phone and could making a career out of it so let's give her a hand shall we?? Please spread the word and share this with your IC friends! Take her survey here!
If you are student who is studying IC and would like our assistance gathering data or promoting your survey/study, please send Jill an e-mail. firstname.lastname@example.org
The Latest Research
ICN Earns Top Honor From Int'l IC Research Study
The IC Network received the top nod from researchers studying the accuracy, credibility, readability and quality of IC/BPS websites. Researchers in the UK conducted a broad search of the web for all IC/BPS websites. They identified 18 websites that were analyzed in depth. Of these, only four were found to have good, quality information. They wrote: "We found the best information was provided by ic-network.com, ichelp.org, painful-bladder.org and niddk.nih.gov." The researchers encouraged physicians to refer patients to these websites, " It is important for clinicians to recognise the benefit that these resources can provide and embrace the good ones as valuable educational resources."
We say THANK YOU and offer our congratulations to the ICA, the International Painful Bladder Foundation and the NIDDK for their hard work! In 2011, researchers at Harvard conducted a similar study which rated the ICN and the NIDDK as the top two IC/BPS websites on IC.
Source: SA Turlapur, et al.Quality of information on the internet related to bladder pain
syndrome: a systematic review of the evidence. Int Urogynecol J Published online- April 2013
More IC Studies
- Interstitial cystitis: another IgG4-related inflammatory disease?
- Study Evaluates Long-Term Effectiveness of Surgery for Pelvic Organ Prolapse
- Effect of amitriptyline in treatment interstitial cystitis or bladder pain syndrome according to two criteria: Does ESSIC criteria change the response rate?
- Adaptation of the O'Leary-Sant and the PUF for the diagnosis of interstitial cystitis for the Brazilian culture
- Local immune response in bladder pain syndrome/interstitial cystitis ESSIC type 3C.
- Effectiveness of acupuncture and moxibustion therapy for the treatment of refractory IC
Professional Education (CME, CEU Opportunities)
How IC Patients Make Confident Dietary Choices
In 2011, the AUA recommended dietary modification as one of the first line treatments for IC/BPS suggesting that patients partner with registered dietitians to help them determine their personal trigger foods. In fact, over 92% of IC patients say that various food and beverages can increase their symptoms and over 84% of patients surveyed said that modifying their diet improves their quality of life. This makes dietary intervention the most successful treatment available for interstitial cystitis. In collaboration with DietitianCentral.com, Julie Beyer RD offers a superb, recorded webinar to help both dietitians and patients understand. There is a small fee associated with this course.. Learn more here!
Conquering IC: Identification and Management Strategies
In collaboration with The France Foundation and the American Urogynecological Association, the ICA has launched a new CME site for medical professionals who want to learn more about treatment and the management of IC patients. http://www.ichelpcme.org
Recent, Topical IC Videos, Webcasts & Blogs
- WEBCAST - AUA 2013 - Contemporary Use of Neuromodulation for OAB, Fecal Incontinence and Pelvic Pain - has an excellent discussion by Dr. Stephen Siegel (the last speaker) on the use of sacral neuromodulation for IC/BPS.
- VIDEO - Summer Vacation Ideas - ICN "Living With IC" Video Series
- BLOG - Pelvic Pain Around The Globe - Pelvic Health & Rehab
- BLOG - The Post About Interstitial Cystitis - Mad Peach: Living with chronic pain in the hoo-ha!
Self-Help Tip of the Month - Summertime Fun, IC Style!
It's important that you give yourself permission to enjoy the summer. A vacation doesn't have to last a week. Even a few hours in a day can reduce stress and make some happy summertime memories. Here are some ideas for day or afternoon outings! Think about it!
- Have you been to a dinner show??? The Medieval Times is popular with adults and children alike with locations throughout the USA. Great bathrooms, a tasty IC friendly feast (roasted chicken) and a fabulous show watching handsome knights on horseback.
- Take a night ghost tour! If you're in Virginia, the Arlington Ghost and Graveyard Tours starts at a museum with a great bathroom and is very entertaining.
- Attend a summer festival, renaissance faire, or even a Pirate Day!
- Visit about a museum, aquarium, wild animal park or exploratorium!
- Visit a historical site in your state - such as the old west town Rawhide (Arizona)!
- Hit the farmers market or visit a local farm here you can pick your own fruit or veggies!
- Think silly! You can't go wrong with a round of miniature golf or bumper bowling!
- Spend an afternoon at a local river or lake, preferably an official park with rest rooms. If you don't want to get into the water, find a nice spot and sunbathe or sit in the shade with a favorite book! Worried about rest room access? You can carry some TravelJohns with you!
- Spend a few hours at your County or State fair - Go early in the day, when the crowds are smaller and the weather is cooler!
- Take a community class! Ever wondered if you could paint? Build a website? Sword fighting? Learn a foreign language? Bake bread? Call your city and see if they offer classes or check the website of your local junior college!
- Disneyland and other theme parks are ideal if your IC is doing well, especially if you tell them that you are struggling with illness or disability. This may require a doctors letter but once you get that coveted disability pass, you won't have to stand in line. You'll go to the front every time!
If you can't travel right now, take heart! Sometimes a vacation of the spirit is something as simple as reading a favorite book, a summer Saturday movie marathon, inviting family and friends over for a BBQ or potluck. Tinker in your garden. Make homemade ice cream! Keep your mind bright and energetic by taking an online class from your local community college.
Recipe of the Month
The (Simply Delicious: Low Acid Eating Made Simple) blog features simple, easy tips that will help you and anyone struggling with acid sensitivity enjoy food again! Sponsored by AkPharma, Makers of Prelief!
If you've found Prelief helps, please LIKE the PRELIEF FACEBOOK page!.
Red, White and Blue Spinach Salad
- 1 c. washed baby spinach leaves
- 1 c. washed baby red bib lettuce, torn to bite size pieces
- 1/2 c. fresh blueberries, washed and drained
- 1/2 c. slivered almonds
- 1/2 c. feta cheese (if desired)
- 2 T. coarsely chopped fresh basil (if desired)
Combine spinach and red lettuce in large salad bowl. Sprinkle blueberries, almonds, and cheese over lettuce. (Hint: Even if you can’t have tomatoes, others you are serving the salad to may want them. Add a handful of tiny grape tomatoes to the salad that will be easy for you to push aside or avoid.) Drizzle with Basil Blueberry Non-Vinaigrette Salad Dressing:
Basil Blueberry Non-Vinaigrette Salad Dressing
- 1 c. frozen blueberries, partially thawed
- 1/2 c. organic, pure blueberry juice
- 1/2 c. olive oil
- 1 t. lemon zest
- 1/2 t. sugar
- 2 t. finely chopped fresh basil (may substitute thyme)
- Pinch salt
- Pinch white pepper as tolerated to taste
Place all ingredients in blender. Blend using one-second “pulses,” checking consistency after every couple of pulses. May also be made without using frozen berries. Simply increase juice to 1 cup.
We're Looking For MD & PT Recommendations in Canada & USA
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.
Do you have the Spring IC Optimist?
The IC Optimist provides financial support to the ICN, thus allowing us to develop this free e-newsletter and the ICN Support center where more than 200,000 patients per month participate! If you've found the ICN helpful, please support us by becoming an ICN subscriber and/or shopping in the ICN Mail Order Center!
(1) No Longer Silent: Men with IC Share Their Stories
(2) Meet the IC Expert: Dr. Greg Davis
(3) The Latest IC Research
(4) Related Conditions: Irritable Bowel Syndrome
(5) Self-Help Tip: Got Urethral Pain?
(6) My Bladder Divorce
(7) Fresh Tastes by Bev: It's Salad Season
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Making Travelling & Vacations Easier
Being prepared is an important part of making a vacation easier and stress free. Here are some travel essentials!
- Prelief - For when your eating at new restaurants
- Rest room Access Cards - To show to flight attendants
- TravelJohns - Works like a charm when you're camping or in a long car ride
- AZO Bladder Pain Relief Tablets - To reduce bladder pain and discomfort
- Tiger Balm Pain Relieving Pads - To reduce pain and discomfort
- BodiHeat Heating Pads - Delivers gentle heat during long car rides, plane flights, etc.
- Chair Cushions - To make sitting in a car more comfortable
- Hint Essence Water - When you want to drink something with flavors
- Basis Soap for Sensitive Skin - The gentlest soap Travel Size bars
Got Pelvic Floor Dysfunction or Pelvic Pain? These can help!
- Heal Pelvic Pain by Amy Stein PT (For Men & Women)
- Ending Female Pain by Isa Herrera PT (For Women)
- Guided Imagery To Enhance Healing - Chronic Pelvic Pain or Prostatitis (For Men)
- Guided Imagery for Relaxation - IC and Pelvic Pain (For Women)
- Guided Imagery to Enhance Healing - IC, Pelvic Pain or Vulvodynia (For Women)
New BodiHeat Wrap!
This is VERY cool! BodiHeat has created a new, light and very comfortable wrap that you can place right over your bladder and wear all day! It's stretchy, very very light and closes with velcro. Simply slip two BodiHeat pads inside and you'll have warm steady heat right where you need it the most!
Jill tried her first this week as she struggled with a painful yeast infection and pelvic floor spasms. She said "It was surprisingly clever and very very comfortable. I loved having heat over my pelvis!! If your body feels better with heat, then these are definitely worth checking out. The belts will last for several uses!"
Find these items and 400 more items in the ICN Mail Order Center Today - http://www.icnsales.com