IC Awareness Month

September is IC/BPS Awareness Month

October 4, 2014
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The WINNERS of our 2014 IC Awareness Month Poster Contest ARE:

FIRST PLACE – CHRISTY KEYES

Christy Keyes wins first place this year for a gorgeous yet satirical poster that utilizes color and text powerfully. Using a carnival theme, she shares the frustration that patients face every day as they struggle with a variety of symptoms and frustrations. Brilliantly done…. and the clear winner in this years contest!

2014 IC Awareness Month Poster Contest First Place Winner

SECOND PLACE – BECCA KEYS

Becca Keyes, Christy’s daughter, offers a delightful image with the most important message of all… that patients “believe” in the future and in themselves. She uses the color of IC Awareness Month beautifully!

2014 IC Awareness Month Poster Contest Second Place Winner

THIRD PLACE TIE – ADDY WILSON

Addy Wilson’s portrait shares the often invisible face of IC. That patients can look so normal on the outside and yet, on the inside, feel so helpless. We must always remember that the “inner” IC patient needs love, comfort, support and encouragement.

2014 IC Awareness Month Poster Contest Third Place Winner

THIRD PLACE TIE – NICOLE JOHNSON

Nicole Johnson entry is the counterpoint to Addy’s above. In it, she reminds us all that the gift of pain is empathy and compassion for others. She reminds us all that we are actually much stronger than we often realize.. and it is in that fight to regain our lives and reduce suffering that we truly shine.
2014 IC Awareness Month Poster Contest Third Place Winner

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September 30, 2014
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Daily Fact #30 – Honoring Those Who Have Passed

IC Awareness Month Daily Fact #30 - Honoring Those Before Us

On this, the last day of IC Awareness Month, we honor those patients and providers who are no longer with us. Many helped the IC movement become the vital, vibrant community of 2014. Daniel Brookoff MD was the first doctor who advocated for the aggressive and compassionate treatment of the pain of IC. C. Paul Perry MD, a co-founder of the International Pelvic Pain Society, who helped to create the first professional organization dedicated to the relief of pelvic pain.

We honor IC group leader Michaeleen Franklin, of Tucson AZ, who was the longest serving IC group leader in the USA before she suddenly passed a few years ago in a plane crash and Evelyn White, co-founder of the IC Redwood Empire support group which was the precursor to the IC Network, taken far too soon after a valiant fight with cancer. We are grateful to every man and woman who started support groups!

And to the many patients who, through no fault of their own, suffered indignity after indignity because IC was not recognized during their life times. We acknowledge their struggles, their pain and their difficulties finding health care. Young and old, single and married, we lost you far too soon! We will continue to try, every day, to honor your memory.

One hundred years ago, IC was barely recognized as a medical condition. Patients were often suspected of having bladder stones or tuberculosis in the bladder.

Fifty years ago patients with IC were often sent to mental hospitals out of the mistaken perception that IC was a mental disorder. They, too, often lived in despair.

Twenty five years ago, patients with IC found a sanctuary in the first organized support groups in the United States, Canada and England. But many still were told that I wasn’t real and were denied care.

Nineteen years ago, the first website and online support group (The Interstitial Cystitis Network) was created for IC patients. Many new therapies were under development, including Elmiron. Patients began to feel hope.

Ten years ago, more IC patients were received a prompt diagnosis. The IC research movement was thriving. The first supplements were created (CystaQ, Desert Harvest Aloe, CystoProtek) that provided hope for patients who lacked access to traditional health care or who could not afford treatments.

Five years ago, new diagnostic and treatment guidelines were passed in Europe, Japan and the USA which created new, consistent treatment plans that have helped millions.

And today, in 2014, IC patients have more resources, more qualified medical care providers and far more information than ever before. We are more hopeful today than ever before due, entirely, to the struggles and successes of those who came before us.

THANK YOU! – Jill H. Osborne, IC Awareness Month Leader & IC Network Founder

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September 29, 2014
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Daily Fact #29 – Smoking and IC

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When a 2012 research study was released that showed the children of smokers were at high risk of developing severe urinary disorders including the symptom of IC, we were stunned (1). Children between the ages of 4 through 17 who sought care from a pediatric urologist for severe urinary symptoms were included in the study. Half were exposed to cigarette smoke in a car and 23% had mothers who were smokers. Researchers found that the greater their exposure to second hand smoke, the worse the children’s bladder symptoms.

Cigarette smoke releases thousands of cancer causing chemicals which pass from the lungs, through the bloodstream to the kidneys where they collect in the urine. The bladder wall is then exposed to high concentrations of toxins thus explaining why smoking is the leading cause of bladder cancer (2).

For the IC patient, smoking could be even more devastating. Because the bladder wall in interstitial cystitis is damaged, these carcinogens and toxins travel more deeply into the bladder wall where they WILL cause yet more severe inflammation AND, I believe, a much greater risk of bladder cancer.

For the sake of the health of your children, your family and your IC, you MUST stop smoking immediately!

- Jill Heidi Osborne MA

References

Robert Wood Johnson Medical School. “Second-hand smoke affects bladder function in children, study suggests.” ScienceDaily. ScienceDaily, 7 June 2012.

Surprising Link: Smoking and Bladder Cancer. Cleveland Clinic Health Hub. 22 October 2013

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September 28, 2014
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Daily Fact #28 – Types of IC Flares

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Interstitial cystitis and bladder pain patients often experience sudden and unpredictable “flares” or worsening of their symptoms. There are a few distinct types of flares.

A “bladder wall” flare occurs when the bladder wall has been irritated, most often by eating or drinking an acidic or caffeinated food or beverage. While some patients report pain within 30 minutes of eating an offending food, most are felt at night, making sleep almost impossible.

A “pelvic floor” flare occurs when the pelvic floor muscles get tight or are traumatized, often during or after long car rides or intimacy. Stress is also a powerful trigger for this type of flare because patients may be sub-consciously tightening pelvic floor muscles.

The good news is that many flares are preventable by following simple self-help strategies (i.e. diet modification, muscle relaxation and other Step One Treatments).

Learn more in the ICN Flare Management Center

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September 27, 2014
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Daily Fact #27 – Pain of IC

Pain of IC Can Be Severe

While pain is not always a symptom in IC, for the men and women who have it, it can be agonizing, as if razors are cutting our bladders. Yet, for years, patients have been told that it’s all in their heads and that they just need to ignore the pain. Hogwash!! Would you deny a cancer patient pain care?? Of course not. The pain of interstitial cystitis has been rated equivalent to cancer pain and deserves urgent, compassionate treatment.

Each patient faces three challenges:

(1) They must learn to differentiate the type of flare/pain they are having. (i.e. the bladder wall vs the pelvic floor vs. other organs in the pelvis). Bladder wall flares are treated very differently than pelvic floor flares.

(2) They must learn to catch and treat flare/pain as early as possible, ideally with self-help strategies, OTC products and, if needed, more aggressive pain therapies.

(3) They must try to prevent future bladder and pelvic floor flares by following key self-help strategies (i.e. diet modification, etc)

Learn how in the ICN’s Bladder & Pelvic Pain Resource Center!

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September 26, 2014
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Daily Fact #26 – Wine and IC/BPS

IC Awareness Daily Fact #26

Is it safe to drink wine when you have interstitial cystitis (IC), bladder pain syndrome (BPS) or chronic prostatitis? If you’re actively in a flare or have Hunner’s lesions, drinking wine would be foolish because alcohol on any tender tissue or open wound would sting. However, when your urinary symptoms have improved, it may be worth trying a low acid, low alcohol wine.

In 2009, we surveyed more than 500 patients who shared with us their experience with wine. 21% reported that they could drink wine without any bladder irritation. 31% reported that they sometimes drink wine without being worse for wear. On the other hand, 48% of patients reported that wine always irritated their bladders.

White wines were better tolerated than reds due, most likely due to the extra added histamines found in red wine. Wines free from sulfites and/or that were organic were easier on the bladder.

If you’re a white wine drinker, we suggest: Chardonnay, Pinot Grigio, Riesling, Sauvignon Blanc.

If you’re a red wine drinker, the clear favorite was Merlot.

Patients also suggested having wine on the rocks, and/or following it with a large glass of water to reduce the overall irritation. Some patients have also used Prelief to reduce the overall acid content.

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Reference:

Free Download – Osborne J. Schmidt J. Wine, Beer & Spirits: Do They Trigger IC Flares? IC Optimist Summer/Fall 2010. 15-18

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September 25, 2014
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Daily Fact #25 – Beer and Interstitial Cystitis

IC Awareness Month Daily Fact #25 - Beer and Interstitial Cystitis

Is it safe to drink beer when you have interstitial cystitis (IC) or bladder pain syndrome (BPS)? In our 2009 Wine, Beer & Spirits Survey, lighter lager, american ales, ambers, pilsners and pale ales were the least bothersome beers, such as Miller Genuine Draft Light and Blue Moon Pale ales. The most irritating beers were the darker english stouts and dark brown ales.

Beer ratings in Interstitial Cystitis Alcohol Survey

Obviously, if your bladder is flaring and your symptoms are very active, it’s best to avoid all alcohol until your symptoms improve. If you’d like to try it again, start with a light lager and then follow that drink with water to dilute the effect in your urine.

Reference:

Free Download – Osborne J. Schmidt J. Wine, Beer & Spirits: Do They Trigger IC Flares? IC Optimist Summer/Fall 2010. 15-18

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September 24, 2014
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Daily Fact #24 – Pregnancy and IC

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If you’re wondering if you can have a baby after a diagnosis of IC, take heart! Thousands of IC patients have had successful pregnancies and children. The most common question asked by potential mothers is “Will my IC get worse during a pregnancy?” In our experience, some IC patients go into remission or experience a decrease of their symptoms during their pregnancy. Other patients report that their symptoms worsen slightly as the pregnancy advances. The Interstitial Cystitis Association did a small study which found that the symptoms of IC decrease during the first two trimesters and then increase slightly during the third trimester, most likely due to the baby putting pressure on the bladder.

Dr. Robert Moldwin, in the IC Survival Guide, shared that his observations aren’t quite so favorable. He’s seen the majority of his patients experience some degree of bladder worsening throughout the pregnancy which he believes is due to the cessation of oral therapies. However, he also said that “most patients make through without any problems.” He suggests the use of conservative therapies, such as yoga, meditation, relaxation, self-hypnosis, acupuncture, diet and the avoidance of constipation to help reduce IC related discomfort

Are you considering pregnancy? The ICN offers several pregnancy patient discussion boards!

Additional Pregnancy and IC Resources

ICN Pregnancy Resource Center
Lesa’s Pregnancy Journal
How Pregnancy Affects IC.
Interstitial cystitis symptoms stable or better in pregnancy
NIDDK Interstitial Cystitis/Painful Bladder Syndrome

Please Share Your Stories

Have you had children after your diagnosis? Did your symptoms improve or worsen? We’d love to hear your story!

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September 23, 2014
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Daily Fact #23 – Cranberry Juice and IC

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Contrary to popular belief, cranberry juice and cranberry products are NOT helpful for all bladder conditions. In fact, cranberry can provoke increased urinary frequency, urgency, pressure and, as thousands of interstitial cystitis patients can attest to, severe pain and discomfort. Cranberry juice is known as the “acid-bomb” in IC patient support groups and has long been considered one of the worst beverages that an IC patient can drink.

Why? Foods high in acid (i.e. citrus fruits and juices, cranberry, vinegar) create irritation in much the same way that acid poured on a wound on your hand would feel. It hurts! Cranberries, for example, contain quinic, malic and citric acid which may help us understand why cranberry juice is irritating for most of us. These acids provoke yet more inflammation in the bladder as they scour the wounds, damage new cells trying to repair the bladder wall and reduce the effectiveness of IC therapies.

Despite our best efforts to educate patients about dietary modifications, thousands still continue to consume cranberry products at the urging of family members and friends, suffering needless pain and discomfort.

Learn more in the ICN IC & Prostatitis Diet List