ICN Weekly Newsletter – June 13, 2014

To Our IC Dad’s – Happy Father’s Day

To all the father’s who have lifted our spirits as we struggled with IC. Who stood strong when we could not. Who stood beside us when others dared to criticize us. We say {{{THANK YOU}}} for being there. For your hugs, your support, your encouragement, your love and your strength. HAPPY FATHER’s DAY!

Blogs, News & Announcements

Feature Article – Swimming and Interstitial Cystitis: Is it safe?

With summer quickly approaching, interstitial cystitis patients are asking “Is it safe to swim?” The answer is complex. Swimming is an ideal exercise for patients struggling with chronic bladder or pelvic pain. It’s gentle, non weight-bearing and minimizes trauma to the pelvic floor. Sounds great, right? The challenge, unfortunately, are the chemicals (specifically the chlorine and acid) used to make pool water bacterial free Read the full article, with seven tips that can help here!

Chats & Conversations in the ICN Support Forum

“How Do You Deal With Public Events and IC? “

ICN member Mena Marie asks for idea on how to manage IC while attending a long public event, such as a funeral. She says “It’s horrible that someone has died and I have to worry about whether or not I’m going to be the person that ruins his funeral because I keep interrupting everyone’s eulogy to use the bathroom. Do you just sit in the back and hope no one notices you? Any advice would be appreciated?” Read it here!

“Taking medications long term”

This patient has asks a difficult question… she wants to know if she should continue using a medication long term when there is no safety data. Her doctor says Yes.. but her gut says she’s not so sure. Do you have some insight to share? Read it here!

“constipation..”

ICN member Stephie asks patients to share their strategies on keeping constipation at bay, including the use of products like Miralax.. Read it here!

“My remission – healing from the inside out”

Long time ICN member Briza shared her formula for success in 2012 and it has encouraged hundreds of patients. There is hope! Healing can and does happen! Read her story and suggestions here!

“When is it time to try Elmiron”

One patient is afraid of the side effects of elmiron, yet is also worried about side effects, etc. She asks whats the right time to try it. Do you have some advice or experience to share with her? Read it here!

“Hypnotherapy for Pain Relief”

ICN member Lyse asks if anyone has tried hypnosis for pain relief. If you’ve tried it, would you please share your experience with her? Read it here!

“White Pizza Sauce & Red Pepper Pizza Sauce”

Do you miss pizza? There’s no reason to avoid it entirely especially when you can use a white pizza sauce instead. ICN member Clevsea shares her recipe and Bladderella shares her recipe for Red Pepper Sauce! . Read it here!

Spring IC Optimist – Have you gotten your copy yet?

The IC Optimist is the flagship publication of the Interstitial Cystitis Network and is delivered to ICN members throughout the world via print or email. Our Spring issue has been released and covers children with IC. They need more resources and urologists to specialize in their care. Dr. Robert Echenberg shares insight into one of the more unusual symptoms that can occur in IC patients, Persistent Genital Arousal Syndrome. You are not alone if you, too, have had a strange, uncomfortable painful sensation “there.”

Read more about the issue here!

Be Involved!

• Help The Research Movement & Take A Survey – How Much Does Interstim Cost: The Short & Long Term Costs of Therapy
• Help The Research Movement & Take A Survey – IC, Gastritis & Gastroparesis – Do you struggle with stomach problems?

AUA 2014 Offers Limited IC Research This year

For the first time in a decade, the IC courses/research/abstracts etc. at the annual American Urological Association meeting were very limited, such that we could not justify spending the money to attend.

• Dr. Moldwin and Dr. Evans offered, yet again, a fabulous course on IC and pelvic pain. They are wonderful ambassadors for the IC movement and provide practical information to help young urologists.
• Gene Therapy For IC – Two studies shared preliminary research on the use of a herpes simplex virus vector to deliver endomorphin or protein phosphatase to the bladder wall showing success in reducing symptoms in rats.
• Rebamipide is used in several asian countries for the treatment of gastroduodenal ulcers and gastritis as a mucosal protectant. It is not, however, approved in the USA. Japanese researchers studied its effect on the bladder in a rat study, reporting that it helped to heal injured bladder mucosa, as well as reducing bladder symptoms. Further study is warranted!
• Exercise was found to be helpful in promoting sexual health and reducing sexual dysfunction in women with IC who have a normal body mass.

The Latest IC Research

Calling IC Researchers! CDMRP Grant Opportunity Now Open

Every year, the Department of Defense allocates $50 million dollars for the study of medical conditions that it has found vital to military effectiveness. Known as the Congressionally Directed Medical Research Program (CDMRP), Interstitial cystitis is one of their key funding priorities. Two large IC studies have been funded in the last few years including Michael Chancellor (2011) and Sonia Planey (2012). ICN President Jill Osborne has served as a peer reviewer for the IC research program for the past three years. Given the dearth of research funding currently available, this is a fabulous opportunity for researchers exploring new, cutting edge approaches to the diagnosis and treatment of IC/BPS. Read more here!

Rare IC Research Study From Iran

“Complementary treatment in chronic pelvic pain syndrome: a case report study “ is the first published research study on IC that we’ve seen from the country of Iran and, wow, it’s confusing. The authors focus on “Iranian traditional medicine”.. and suggest that flatulency (i.e. farting) is the cause of recurring pelvic pain. Hmmm… They gave a 60 year old woman with IC horsemint (mentha longifolia), to be taken twice a day for 12 weeks. She reported that her symptoms improve and that further study is warranted.

Now, given the connection between IC and IBS, it may be that this patients pain symptoms are being driven by the bowel as well as the bladder. So, the use of a mint to calm the bowel absolutely makes sense. This is certainly done frequently here in the USA. On the otherhand, because I can’t read the journal article, I’m just not sure what connection they are suggesting is between IC and farting. Read the abstract here!

• Symptom persistence in a community cohort of women with interstitial cystitis/bladder pain syndrome (IC/BPS): 3-, 6-, 9-, and 12-month follow-up from the RICE cohort.
• The overlap and distinction of self-reported symptoms between interstitial cystitis/bladder pain syndrome and overactive bladder: a questionnaire-based analysis.
• Inflammation and Inflammatory Control in Interstitial Cystitis/Bladder Pain Syndrome: Associations with Painful Symptoms.

IC Resources From The ICN Mail Order Center

www.icnsales.com – 800.928.7496 or 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!

Update on MultiRight Low Acid Multi Vitamin

MultiRight, the low acid vitamin complex that has been getting solid reviews from IC patients for not irritating the bladder, should be back in stock within two weeks! This from the manufacturer, Farr Labs!! The price will be increasing to, we believe, $22.99 for a three month supply! You can sign up to receive notice about its return here!

New! Healing Abdominal & Pelvic Pain DVD

Produced by Amy Stein MPT, the author of Heal Pelvic Pain, this new two hour video shares the Beyond Basics Physical Therapy Home Program for the management of pelvic and abdominal pelvic pain in men, women and children.

The goal of this video is to explain the various symptoms and the possible causes, of pelvic and abdominal pain, and assist men, women and children of whom suffer from pelvic, abdominal and back pain, through gentle massages and stretches. The video also offers easy to follow internal manual therapy techniques for men and women. As well, there is an explanation of what abdomino-pelvic pain syndromes and pelvic floor dysfunction are from a musculoskeletal perspective.

• Bring awareness to unexplained pelvic, abdominal and back pain in men, women and children, and how it can cause urinary, bowel and sexual dysfunction
• Treating pelvic pain, IBS, bladder, bowel and sexual disorders It can be mistaken for SO many other things
• A program of stretching, massage techniques (external and internal), nutrition, self-care and behavioral modifications to heal pelvic, abdominal and back pain
• Relieving pain in an ‘intimate’ area
• Surgery and drugs alone are usually NOT the answer if it is a musculoskeletal disorder

Learn more!

Summertime Sweet Teas

If you’re missing class sweet tea, take heart. You can make some fabulous sweet herbal teas using the teas below! Remember, everyones bladder is different. It takes some trial and error but most sensitive bladders should tolerate these well.

Chamomile Nights Herbal Tea	Maple Apple Cider	Cinnamon Vanilla
Cinnamon Apple Chamomile	Organic Cascade Mint	Caramel Peach With Coconut

OTC Pain Relief Products, Cd’s & Books

• AZO Urinary Pain Relief Tablets – Are available at most neighborhood grocery and drug stores
• ProSirona – Suggested for pelvic pain by the Endometriosis Association
• Tiger Balm Pain Relieving Patch – Suggested in The Better Bladder Book
• The Bodiwrap Heating Pad – Places heat exactly where you need it, over the pelvis
• Guided Imagery for Relaxation for IC and Pelvic Pain
• Guided Imagery To Enhance Healing for IC, Pelvic Pain or Vulvodynia
• Guided Imagery to Enhance Healing for Chronic Pelvic Pain or Prostatitis (Men)
• ICN Special Report on Managing Pain
• Heal Pelvic Pain by Amy Stein
• Ending Female Pain by Isa Herrera
• Ending Male Pelvic Pain by Isa Herrera

Our Favorite New Snack – KIND Nut Bars

It is so hard to find healthy, IC friendly snacks! After all, pears and blueberries get a little boring after a while, right?? Well, if you haven’t heard about KIND nut bars, you’re in for a treat. KIND bars are made from all-natural whole nuts, fruits and whole grains. No secret ingredients and absolutely nothing artificial here. Just a delicious way of getting your body essential nutrients like fiber, protein and antioxidants (to name a few).

We’ve fallen in love with these very healthy bars and we hope you will too!!!! There are 20 varieties but we’re starting with just two flavors that should be IC friendly because, well, we’re eating them every day and not flaring – (1) ALMOND & COCONUT and (2) ALMOND & APRICOT, covered in yogurt!