The IC Optimist published by the Interstitial Cystitis Network • volume 5, issue 4 • Fall 2008 A New Approach to IC and Prostatitis How the Bowel Can Trigger Bladder Pain Is Your Car IC Friendly? Holiday Foods & Parties Departments The Latest IC Research • Book Reviews • Perfect Fall Flavors Fresh Tastes with Bev Laumann • ICN Resource Guide • ICN Editorial from the publisher The IC Optimist Publisher: Interstitial Cystitis Network PO Box 2159 Healdsburg, CA 95448 (707) 538-9442 (V) (707) 538-9444 (F) www.icnsales.com A s I’m writing this, I’m sipping on a warm mug of apple cider, well diluted of course to reduce the acid level, and watching little gusts of wind blow leaves in rolling puffs down my street. It’s a lovely, whimsical sight that just makes me smile. Copies & Reprint Requests: Single issues are available for purchase. (707) 433-0413 http://www.icnsales.com Alas, this means that winter and the holiday season are fast approaching. I wanted to take a moment and wish each of you the happiest of holiday seasons. May the New Year will bring you peace, joy, comfort and healing. Featured Writers: Bev Laumann Jill Osborne Image Credits: Cover: © Catherine Yeulet p. 3: © Catherine Yeulet p. 5: © Joey Nelson p. 12: © Ekaterina Monakhova p. 15: © Daniel Rodriguez p. 19: © Elzbieta Sekowska Design & Production: Tapia Studios (707) 545-7741 Featured Sponsors: Cystoprotek www.cysto-protek.com Akpharma (Prelief) http://www.prelief.com CystaQ http://www.cystaq.com Bladder Q http://www.thenaturalbladder.com Astratech (Lo Fric Catheter) http://www.astratech.com We welcome freelance query letters and ad submissions for our publications and websites. For additional info: (707) 538-9442 or email [email protected] The IC Optimist is distributed electronically or in print format four times a year to subscribers of the Interstitial Cystitis Network, a medical publishing company dedicated to providing information & support for those struggling with interstitial cystitis, overactive bladder, painful bladder syndrome and pelvic pain syndrome. The ICN is a division of J.H. Osborne, Inc. I have no doubt that 2009 will bring us closer to solving the many mysteries of IC. Speaking of mysteries, we had what I consider to be a spectacular breakthrough through this summer thanks to a group of four researchers who have boldly gone where few have gone before. They have proposed that IC and prostatitis (aka urologic chronic pelvic pain syndrome) be broken into six subcategories (phenotypes) that will help doctors not only diagnose patients but also take the mystery out of creating customized treatment plans. This is, in my opinion, one of the most important proposals I’ve read in years and I support it wholeheartedly. For some of us, IC is clearly more than just a bladder disease. Many IC’ers also struggle with IBS, vulvodynia, pelvic floor muscle tension and anxiety disorder. This article makes me want to stand up and say “I told you so” to those people who suggested that IC wasn’t real. I hope you will join me in sharing this with all of your physicians, not just urologists, so that more patients will be diagnosed promptly. October was a big month for the IC movement and the first time in recent history that an IC Awareness Week was launched, including a brand new documentary on IC currently being broadcast by PBS stations across the USA. We were delighted to participate and hope that, next year, more IC groups will join in. Of course, we’ve included the latest IC research and news, along with a wonderful column on Holiday Parties by Bev Laumann. Because driving can be so challenging for pelvic pain patients, we’ve included an updated discussion on finding IC friendly yet fuel efficient cars. Yes, friends, the Toyota Prius might be fuel efficient but it receives poor reviews for comfort and ease of travel. And to keep the fall spirit alive, we’ve included some favorite IC friendly fall recipes! Enjoy and I wish you a cozy and comforting holiday season! Jill Osborne 2 • THE IC OPTIMIST • FALL 08 contents 4 ICN Editorial: IC Awareness Week 2008! by Jill Osborne, M.A. 5 A New Approach to IC and Prostatitis by Jill Osborne, M.A. 8 How the Bowel Can Trigger Bladder Pain 9 The Latest IC Research 12 Fresh Tastes with Bev Laumann: Holiday Foods & Parties 15 Is Your Car IC Friendly? 17 Book Review: Confident Choices: A Cookbook for IC and OAB 18 Book Review: Heal Pelvic Pain 19 Perfect Fall Flavors 20 ICN Resource Catalog Copyright © 2008. Any reproduction is prohibited without prior written permission from the ICN. Disclaimer: The Interstitial Cystitis Network website and publications are for informational purposes only. The IC Network is not a medical authority nor do we provide any medical advice. Nothing contained in this publication should be considered medical advice and should not be relied upon as a substitute for consultation with a qualified medical professional. We strongly recommend that you discuss your medical care and treatments with your personal medical care provider. Only that medical professional can, and should, give you medical advice. Opinions expressed in articles are those of the authors and do not necessarily reflect those of the ICN or its editorial board. The ICN assumes no liability for any material published herein. THE IC OPTIMIST • FALL 08 • 3 ICN Editorial: IC Awareness Week 2008! I’m really pleased to end 2008 with an editorial that expresses gratitude. Yes, gratitude! I’d like to publicly thank Baker Norton, Alza Pharmaceuticals and OrthoUrology for spending hundreds of thousands of dollars in IC awareness activities over the past fifteen years. Baker Norton was the company that developed and launched Elmiron years ago in the early 1990’s. Alza Pharmaceuticals acquired Elmiron from Baker Norton and, for many years, was solely responsible for IC awareness activities around the world. They created excellent physician and nursing staff educational materials and CME’s. They were always visible and sponsoring urology conferences. This wasn’t just a company interested in earning a profit. They saw that patients and providers needed help and they sought to fill those needs. Ortho Women’s Health and Urology acquired the rights to Elmiron years ago and have continued the tradition of IC outreach in many ways. They continue to offer great educational materials. In fact, the first information usually given to IC patients is a nice little kit of information from the company. But this Fall, they did something really special that deserves this editorial. They, along with the National Association of Nurse Practitioners in Women’s Health (NPWH) and the ICN, created the first EVER IC Awareness Week from October 2024, 2008. What made it truly innovative was its use of both traditional media outlets (print, television and audio broadcasts) and the internet to spread the word about IC and pelvic 4 • THE IC OPTIMIST • FALL 08 pain. You’ll find podcasts on IC on the event website (allaboutic.com) that you can listen to. On local PBS television stations around the USA, you’ll also have the chance to watch a brand new documentary on IC produced by Healthy Body Healthy Minds who, you may remember, did a beautiful documentary on IC a few years ago. This is a new, updated 30 minute episode. The National Association of Nurse Practitioners in Women’s Health also deserve a rave review. As many of you know, Nurse Practitioners play a vital role in many IC and urology clinics and often are the first contact for IC patients. They often have much more time to spend with patients, and offer extremely compassionate care. Best of all, they are often very accessible for patients in crisis and flares. If you want a highly qualified professional to pay attention to your health needs, consider seeing a nurse practitioner. IC would not be where it is today, particularly in terms of patient and provider education, if not for these companies and organizations who have consistently raised awareness. No single patient group could have done what they have done simply due to the costs involved. Thus, we owe them a debt of gratitude for their belief in IC, for their dedication of significant money to promote our cause, for their direct sponsorship of research and, most of all, for their thoughtfulness. —Jill Osborne, M.A., ICN President & Founder A New Approach to IC & Prostatitis by Jill Osborne, M.A. ICN President & Founder We’ve always known that IC and prostatitis patients have different combinations of symptoms and physical findings. Some have frequency and urgency, while others struggle with bladder or pelvic pain. Some may have Hunner’s Ulcers, while others little or no visible damage in their bladder. Some have pelvic floor dysfunction while others struggle with a variety of related conditions, such as vulvodynia and/or IBS. The diversity found in any group of IC patients is substantial thus begging the question: are there different types or subsets of IC? Consider the poor results found in many IC and prostatitis clinical trials. Would a patient with pelvic floor dysfunction and no bladder damage respond favorably to an Elmiron trial given the fact that Elmiron specifically treats the bladder wall?? Probably not. Would a patient with bladder wall damage and no evidence of pelvic floor dysfunction respond well to a physical therapy Phenotypes represent a new, flexible and dynamic way of viewing IC/PBS... trial? Again, probably not. But, if a patient has both conditions, they may respond marginally but not fully to a specific treatment. Similarly, a cookie cutter approach to treatment (i.e. prescribing Elmiron and Elavil) can be ineffective if a patient has not had a full diagnostic workup. Consider the case of ICN member Cathy whose doctor suggested that she have her bladder removed because none of the traditional IC treatments worked for her. Prior to surgery, she was sent to a major IC research center for a second opinion. They discovered that her bladder was in good shape and certainly not requiring removal. Her intense pain was the result of severe pelvic floor dysfunction that all of her previous physicians had missed. Clearly, we need better diagnostic and treatment tools that assess the “whole” patient and not just the bladder, including the many related conditions that IC and prostatitis patients often struggle with. Luckily, we had a breakthrough this summer when researchers Dan Shoskes and Ray Rackley (both of the Cleveland Clinic), J. Curtis Nickel (Queens Univ) and MA Pontari (Temple Univ) proposed a brand new classification based entirely on physical symptoms that they believe will facilitate more effective and individualized treatment programs. These “subsets” or “phenotypes” show the diversity of symptoms and conditions that patients can struggle with and allows physicians to better evaluate the patient as a whole. Most of all, their proposal validates those patients who have, for years, complained that they experienced more than just bladder symptoms, including bowel problems, vulvodynia, pelvic floor muscle dysfunction and more. How Does a Pelvic Pain Syndrome Begin? “Most patients describe an initial event, such as a UTI, sexually transmitted disease or local trauma that ... set into motion the events that eventualTHE IC OPTIMIST • FALL 08 • 5 ly led to UCPPS,” they offered. When the bladder wall/GAG layer is damaged, urine may irritate nerves in the bladder wall and cause mast cells to release histamine. This inflammation can also trigger pain which causes the bladder to spasm and the skeletal muscle of the pelvic floor to tighten and contract (aka pelvic floor dysfunction). Pelvic floor muscle tension can trigger various bladder symptoms, pain during intercourse and referred pain to other muscle groups, such as the upper leg and lower belly (Table 1). When pain has been experienced over a longer period of time, neuropathies can develop including an increased perception of pain, including allodynia (perception of pain without a painful stimulus) and hyperalgesia (increased perception of pain in the damaged area and also surrounding tissue). It’s not surprising that the overall combination of symptoms (pain, inflammation, muscle tension, etc.), particularly when experienced over the long term, can lead to increased stress and psychological effects such as anxiety, depression, pessimism, hopelessness and catastrophizing. Thus, patients can be left in a vicious cycle of inflammation, muscle tension, stress and chronic pain. The good news is this also identifies possible new approaches to treatment. Diagnostic Protocol The authors recommend that a thorough diagnostic workup be performed, including a comprehensive history of symptoms, sexual functioning, history of bladder infections, sexually transmitted diseases, and surgeries in the pelvis. The patient should also be assessed for allergies, IBS, fibromyalgia, chronic fatigue, vulvodynia, low back pain and migraine headaches. They also suggest that physicians probe for signs of depression, anxiety, lack of support, etc. Patients should receive a physical examination of the pelvic region, 6 • THE IC OPTIMIST • FALL 08 Initial Event or Trauma infection, injury or allergy Causes Bladder or Prostate Tissue Injury Causes Inflammatory Processes to Begin Pain Response Pain Response Pain triggers bladder spasms and/or pelvic floor muscle tension Chronic Pain Increased psychosocial effects stress, anxiety, depression Chronic Pain Chronic Pain Neuropathies may occur hyperalgesia, allodynia Table 1: Inflammatory Sequence including a full gynecological review for women and a genital/rectal/ prostate exam for men, specifically looking for pain or tenderness in the abdomen, perineum, pelvic floor and rectum. Bladder and prostate infection are usually ruled out through urine and/or semen analysis. Additional testing can be per- formed to assess bladder health including cystoscopy, urodynamics, hydrodistention, ultrasound, and a bladder anesthetic cocktail. Based upon the above results, patients are then classified into six phenotypes which each have their own specific treatment plans. The New Phenotypes The authors recommend that a thorough diagnostic workup be performed. The six new phenotypes represent key clinical treatment areas and options. Ideally as a patient is assessed, treatments will be considered in each area where symptoms are present. Please note that out of the six phenotypes, a patient can have any combination of symptoms. Some patients may have just one area, while others may have four or five. (1) Urinary Symptoms: Do patients have bothersome fre- quency, urgency, pain?? Do they struggle with nighttime voiding? Do they struggle to empty their bladder?? These patients might be treated with dietary changes, anticholinergics, alpha blockers, bladder instillations and/or neuromodulation. (2) Psychosocial: Do patients struggle with depression? abuse?? catastrophizing? These patients can benefit from counseling, various cognitive & behavioral therapies and/or the use of antidepressants. Stress reduction is also important. (3) Organ Specific Findings: Do patients have evidence of damage or trauma to the bladder or prostate (i.e. petechial hemorrages, Hunners Ulcers, etc.)? Is the pain triggered by bladder filling? Does the pain resolve after the use of an anesthetic cocktail? These patients might be treated with typical IC and CPPS therapies such as Elmiron, rescue instillations, quercetin, bee pollen, diet modification, etc. Quercetin and bee pollen, for example, “can improve symptoms and inflammation in CPPS (prostatitis) as well as lowering oxidative stress.” Hunner’s ulcers may be treated with surgery, fulguration, etc. (4) Infection: While empiric antibiotics (medications prescribed before culture results are available) have been found to be ineffective and overused in both IC and prostatitis, there are times when patients may struggle with infection and/or respond favorably to antibiotic use. Infections may include low count enteroccocus, or unusual infections such as Ureaplasma, Chlamydia, Mycoplasma). If patients have evidence of infection (i.e. positive urine cultures, etc.). they are generally treated with antibiotics usually selected through antibiotic sensitivity testing. (5) Neurological/System Conditions: Do patients struggle with any of the related conditions to IC, such as IBS, fibromyalgia, chronic fatigue syndrome, vulvodynia or migraines? These require treatment based upon those medical conditions. In addition, patients might use neuroleptic drugs such as amitryptiline, or acupuncture and pain management. Stress reduction is also, again, important for these patients. (6) Tenderness of Skeletal Muscles: Do patients have any muscle trigger points, spasms in the pelvis or belly? These patients are generally treated with physical therapy. Stress reduction is also important because stress can trigger muscle tension. The use of antispasmodics such as Stress reduction is also important because stress can trigger muscle tension. URINARY SYMPTOMS Flexeril can be helpful. Chair cushions and modified bicycle seats can also help. Conclusion: Phenotypes represent a new, flexible and dynamic way of viewing IC/PBS and prostatitis that will, undoubtedly, provide a better structure for selecting treatments...but also for creating new, more targeted clinical trials. It’s a brilliant move! The only thing we would have added is a phenotype related of pudendal neuralgia for those patients who have unusual positional symptoms (i.e. pain only when sitting) which can be the result of a pudendal nerve entrapment. Our gratitude to the authors! You’ve proven, yet again, that you’re truly innovative IC researchers and clinicians. We say Bravo!!! Source: DA Shoskes, JC Nickel, RR Rackley and MA Pontari. Clinical phenotyping in chronic prostatitis/chronic pelvic pain syndrome and interstitial cystitis: a management strategy for urologic chronic pelvic pain syndromes. Prostate Cancer and Prostatitis Diseases 22 July 2008 Frequency, Pain, Difficulty Emptying Anticholinergics Alpha Blockers Diet Modification Caffeine, etc. ORGAN INVOLVEMENT Evidence of Bladder or Prostate Damage Anticholinergics Alpha Blockers PSYCHOSOCIAL SYMPTOMS Depression, Anxiety Increased Stress Counseling, AntiDepressants, Therapy Stress Management Stress Reduction NEUROLOGIC CONDITIONS IBS, Fibromyalgia, CFS, Vulvodynia Related Treatments Neuroleptic Drugs TENDERNESS OF MUSCLES Muscle Spasm, Trigger Points Pelvic Floor Physical Therapy INFECTION Infx of Atypical Organisms, etc. Antibiotic Treatment Table 2: Phenotypes, Symptoms and Possible Treatments THE IC OPTIMIST • FALL 08 • 7 How the Bowel Can Trigger Bladder Pain Source: Northwestern University Feinberg School of Medicine What’s the worst that could happen after eating a slice of pepperoni pizza? A little heartburn, for most people. But for up to a million women in the U.S., enjoying that piece of pizza has painful consequences. They have a chronic bladder condition that causes pelvic pain. Spicy food — as well as citrus, caffeine, tomatoes and alcohol — can cause a flare in their symptoms and intensify the pain. Researchers had long believed the spike in their symptoms was triggered when digesting the foods produced chemicals in the urine that irritated the bladder. A surprising new discovery from Northwestern University’s Feinberg School of Medicine reveals the symptoms — pain and an urgent need to frequently urinate — are actually being provoked by a surprise perpetrator. It’s the colon, irritated by the spicy food, that’s responsible. The finding provides an explanation for how the body actually “hears” pelvic pain. Klumpp conducted the study with postdoctoral fellow Charles Rudick. The paper is published in the September issue of Nature Clinical Practice Urology. The Northwestern researchers discovered the colon’s central role in the pain is caused by the wiring of pelvic organ nerves. Nerves from this region — the bladder, colon and prostate — are bunched together like telephone wires and plug into the same region of the spinal cord near the tailbone. People with interstitial cystitis have bladder nerves that are constantly transmitting pain signals to the spinal cord: a steady beep, beep, beep. But when the colon is irritated by pepperoni pizza or another type of food, colon nerves also send a pain 8 • THE IC OPTIMIST • FALL 08 signal to the same area on the spinal chord. This new signal is the tipping point. It ratchets up the pain message to a chorus of BEEPEEPBEEPBEEP! “It was known that there was cross talk between organs, but until now no one had applied the idea to how pain signals affect this real world disease, how the convergence of these two information streams could make these bladder symptoms worse,” said Klumpp, who also is an assistant professor of microbiology-immunology at the Feinberg School. Nerves from this region — the bladder, colon and prostate — are bunched together like telephone wires and plug into the same region of the spinal cord ... The discovery also opens up new treatment possibilities for “painful bladder syndrome,” or interstitial cystitis. The findings suggest that bladder pain can be treated rectally with an anesthetic in a suppository or gel. Another possibility is an anesthetic patch applied to pelvic skin. Studies in back pain show anesthetic patches applied to the skin can reduce back pain, Klumpp said. “We imagine a similar kind of patch might be used to relieve pelvic pain, which might be the best solution of all,” he noted. How they “caught” the colon For the study, Klumpp and Rudnick created a model of a mouse that mimicked an inflamed bladder with pelvic pain. Then they injected lidocaine into the bladder. The pain vanished. Next they injected lidocaine into the uterus. There was no diminishment of the pain. Lastly, they tried lidocaine in the colon. “In the colon it knocked down pain just as effectively as if we put it in the bladder. We thought if the colon can suppress bladder-associated pain, maybe it can make it worse in the way that foods irritate bladder symptoms,” Klumpp explained. So, Klumpp injected a small dose of red pepper into the colon of a normal mouse. The injection didn’t provoke any pain. But then he injected a small dose into a mouse with pelvic pain. The pelvic pain worsened. “We likened it to what happens to humans,” Klumpp said. “Pepperoni pizza does nothing to most people other than heartburn, but when you give it to a person with an inflamed bladder, that will cause their symptoms to flare because the nerves from the bladder and bowel are converging on the same part of the spinal cord.” It’s important to note that both the bladder and bowel can be irritated by foods. This begs the question: should we modify the IC diet to exclude foods known for irritating the bowel? Luckily, we already do. Chocolate and coffee, for example, are notorious bowel irritants. If you are struggling with diet-induced flares, take a moment and look at your diet to see if you are eating any bowel-irritating foods. You might consider eliminating them to see if your symptoms improve. The Latest IC Research NIH Launches Effort to Advance Study of Urologic Pelvic Pain Disorders The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), announced awards to eight academic research centers to conduct collaborative studies of urologic chronic pelvic pain disorders by looking for clues outside the bladder and prostate. The total research investment for the five-year project is estimated to be up to $37.5 million. The MAPP research effort is expected to lead to critical new insights into the underlying causes of urologic pelvic pain. “The launch of this novel research effort is an excellent example of NIH’s commitment to encouraging translational research,” said NIH Director Elias A. Zerhouni, M.D. “It also illustrates NIH’s leadership in furthering innovative approaches to discovering effective new therapies to help our patients.” The Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network is unusual in requiring investigators to conduct highly collaborative research of the most common urologic chronic pelvic pain syndromes from a broadened systemic perspective. This is a major shift from earlier organ-specific research on the two most prominent urologic chronic pelvic pain disorders, interstitial cystitis/painful bladder syndrome (IC/PBS), and chronic prostatitis/ chronic pelvic pain syndrome (CP/CPPS). “The MAPP Network’s expanded scientific approach will address many persistent questions about urologic chronic pelvic pain,” said NIDDK Director Griffin P. Rodgers, M.D. “Knowing whether there are risk factors common to all the disorders and whether clinical profiles can be identified for each will provide invaluable, fundamental information for developing treatment strategies.” The innovative shift in research focus represented by the MAPP initiative is supported by recent epidemiological studies showing that IC/PBS and CP/CPPS are frequently associated with other chronic pain disorders such as fibromyalgia (chronic pain of unknown origin), chronic fatigue syndrome, and irritable bowel syndrome. These latest findings suggest the possibility of common underlying disease processes in these chronic disorders. “The bladder was assumed to be the origin of the interstitial cystitis/painful bladder syndrome symptoms and the prostate was assumed to be the source of chronic prostatitis/chronic pelvic pain syndrome symptoms,” explained Leroy M. Nyberg Jr., M.D., Ph.D., the NIDDK urologist heading the program. “However, in spite of intense study funded by NIDDK, no organspecific cause has been identified for either disorder.” The MAPP research effort is expected to lead to critical new insights into the underlying causes of urologic chronic pelvic pain. Widening the scope of research will be bolstered by the perspectives of project leaders not normally involved in urologic pelvic pain studies, but who have expertise in relevant scientific disciplines. This will expand the context in which research into IC/PBS and CP/CPPS occurs and will encourage a more comprehensive approach to understanding chronic pelvic pain. This new reseach network includes six Discovery Sites that will conduct the studies and two Core Sites that will coordinate data collection, analyze tissue samples, and provide technical support. The Discovery Sites and Principal Investigators are: • Northwestern University, Chicago - David Klumpp, Ph.D., Anthony J. Schaeffer, M.D. • The University of California, Los Angeles - Emeran Mayer, M.D., Larissa Rodriguez, M.D. • The University of Iowa, Iowa City - Karl Kreder, M.D. • The University of Michigan, Ann Arbor - Daniel Clauw, M.D., J. Quentin Clemens, M.D. • The University of Washington, Seattle - Dedra Buchwald, M.D. • Washington University, St. Louis - Gerald Andriole, M.D. Pelvic Disorders Affect Large Numbers of Women Source: UT Southwestern Medical Center Newswise — Nearly one-quarter of all women suffer from pelvic-floor disorders, such as incontinence, at some point in their lives, a national study, including researchers from UT Southwestern Medical Center, has found. The study of nearly 2,000 women in seven U.S. cities found that 23.7 percent of participants had experienced at least one pelvic-floor disorder, and the risk increased with age. “This study is the first nationwide study to confirm what we consider a high prevalence of pelvic-floor disorders in the U.S.,” said Dr. Joseph Schaffer, professor of obstetrics and gynecology at UT Southwestern and an author of the study, which THE IC OPTIMIST • FALL 08 • 9 appears in today’s issue of the Journal of the American Medical Association. “Nearly a quarter of all women suffer from at least one pelvic-floor disorder, and, with the aging of the population, this will become more prevalent,” he said. The national rate of pelvic-floor disorders has not been well-studied, although several regional studies have found that almost 10 percent of women go through surgery for such conditions at some point in their lives, while one-third of those women have two or more surgeries. The current study was designed to assess the national rate of such disorders. The participating women were interviewed in 2005 and 2006 at their homes or at a mobile interview center and did not undergo physical examination. The questions were part of the National Health and Nutrition Examination Survey. For the current study, the 10 • THE IC OPTIMIST • FALL 08 researchers focused on three conditions: urinary incontinence, fecal incontinence and symptomatic pelvic organ prolapse, which occurs when women can feel or see an organ dropping or bulging in the vaginal area. This can indicate a dropping of the uterus, bladder or rectum as supporting structures weaken. The researchers interviewed 1,961 nonpregnant women older than 20. Overall, 15.7 percent of women experienced urinary incontinence; 9 percent experienced fecal incontinence; and 2.9 percent reported symptomatic pelvic organ prolapse. In all, 23.7 percent reported one or more conditions. The rates of the conditions went up substantially with the number of childbirths and with age. They also were higher among the poor or less educated. Obesity also increased the risk. Race or ethnicity had no effect on the conditions. “Physicians with expertise in caring for pelvic-floor disorders offer a variety of nonsurgical and surgical treatments that can significantly improve the quality of life for patients with these problems,” Dr. Schaffer said. “Patients with pelvic-floor disorders should be encouraged to seek care from health care providers, particularly those with expertise in pelvic-floor medicine and surgery.” The study was funded by the National Institutes of Health. The research was conducted by the Pelvic Floor Disorders Network, which, in addition to UT Southwestern, includes study authors from the NIH, University of Utah School of Medicine, Cleveland Clinic, University of Alabama at Birmingham, Loyola University Stritch School of Medicine, University of Michigan School of Public Health, University of North Carolina School of Medicine and Duke University School of Medicine. A Real-Life Multicentre Clinical Practice Study to Evaluate the Efficacy and Safety of Intravesical Chondroitin Sulphate for the Treatment of Interstitial Cystitis BERKELEY, CA (UroToday.com – Author: Phil Hanno MD) - One of the best studied ‘naturally occurring’ glycosaminoglycans in bladder pain syndrome has been chondroitin sulphate. Studies have indicated a deficit of this proteoglycan in the bladder uroepthelium in BPS. Curtis Nickel from Kingston, Ontario and his Canadian colleagues reported on a multicenter, community based, open-label, uncontrolled study designed to assess the efficacy and safety of intravesical sodium chondroitin sulphate for BPS. The less-restrictive National Institutes of Health Interstitial Cystitis Database Study definition of interstitial cystitis was the operative definition. Patients must have had urinary/bladder pain/discomfort and urinary frequency/urgency persisting for more than 24 weeks with a negative urine culture and no other obvious cause for the symptom complex. A two percent solution of sodium chondroitin sulphate was instilled by urinary catheter weekly for 6 weeks and then monthly for 16 weeks. A seven point global response assessment was the primary endpoint requiring marked or moderate improvement to qualify as a success. In all, at week 10, 47% of patients were responders. The O’Leary Sant symptom score decreased by a mean of 5 points and the O’Leary Sant problem score decreased by a mean of 4.3 points. The responder rate increased to 60.4% at week 24. Twenty-eight patients reported 65 adverse events, all mild, and only 20 of those were considered possibly related to treatment. No safety issues were identified. While open-label trials are notoriously unreliable in the study of BPS treatments, this study does show proof of concept and suggests the need and rationale for a well-powered, randomized, placebo-controlled trial of intravesical chondroitin sulphate for BPS. Nickel JC, Egerdie B, Downey J, Singh R, Skehan A, Carr L, IrvineBird K BJU Int. 2008 Sep 3. Epub ahead of print 10.1111/j.1464-410X.2008.08028.x THE IC OPTIMIST • FALL 08 • 11 Holiday Foods & Parties a Fresh Tastes column by Bev Laumann, author of A Taste of the Good Life, a Cookbook for An IC Diet. Since my diagnosis of IC, I have to admit I don’t look forward to the holidays in the same way I used to. In fact, I sometimes wince at the thought. I know that the hectic pace of this month will make my diet and medication schedule more difficult to manage. I’ll need more sleep and need to do more advance planning for my activities. And I wince knowing that I’ll probably need to lay in some extra supplies of my “emergency” medications to handle a stress-induced bladder flare. I’ll have to say “no thanks” more often when my body’s needs for rest or food conflict with the social expectations of others. Yes, once ...I flat out refuse to stay home and help the IC do its dirty work of isolating me. 12 • THE IC OPTIMIST • FALL 08 again I’ll endure some incredulous stares and disapproving looks from the uninformed. But each year I flat out refuse to stay home and help the IC do its dirty work of isolating me. The IC has deprived me of enough. No way am I going to duck out on the holiday celebrations I’ve always enjoyed out of fear of a symptom flare-up. For those of us with IC, holiday parties and family gatherings can be a big stressor as well as an opportunity for fun. And a big part of that stress will be struggling with foodrelated dilemmas. At every occasion this time of year temptation looms in the form of chocolate treats, alcoholic beverages, or unfamiliar foods that have who-knows-what in them. Do I relish a taste now and possibly suffer later? Or deprive myself now but be able to function later? Here are some ideas for managing at least some of the diet-related anxieties associated with holiday parties and gatherings: 1. The Dinner Party... Consider communicating your dietary situation to the host or hostess well in advance. Chances are if they care enough to invite you in the first place, they’ll be happy to make some reasonable accommodations to help you enjoy yourself. Give them the opportunity to be sympathetic and helpful. No need to go into medical details. Just ask what they’re serving and tell them your doctor has you on a diet that avoids hot spices and certain foods. (I find it helpful to draw an analogy between my situation and that of people with diabetes, stomach ulcers, lactose intolerance or food allergies-food- related problems that people are more familiar with). I try to think of these situations as an opportunity to educate others about IC as well. You never know, the hostess may know someone else who suffers from the same symptoms you do but hasn’t been lucky enough to get it diagnosed. Sharing your experience may help another person, and isn’t that what the season is supposed to be about? 2. Parties where alcohol is served... First of all, remember that alcohol doesn’t mix with many painkillers, antidepressants and antihistamines, so check with your doctor or pharmacist if you plan on drinking. If drug-alcohol interactions are not a problem for you, here are some other facts to keep in mind: • Histamine adversely affects mast cells, and mast cells in the bladder tissue are thought to be involved in IC symptoms. Beer and wine contain histamine. Red wine has much more than white wine. Alcohol makes the situation worse by impairing the body’s ability to break down and get rid of the histamine. • Beer and wines also contain a substance called tyramine which, like histamine, is a monoamine. No one’s sure exactly why, but many high-monoamine foods exacerbate IC symptoms. Among other things it does, tyramine closes down the arteries, decreasing blood supply to tissues and increasing blood pressure. (I wonder if perhaps less circulation may mean less opportunity to “wash out” any inflammatory substances in the tissue). Beer and red wine are especially high in tyramine. All aged Bladder Problems? Enjoy everyday life, again! Some foods are keeping many people from doing the things they once enjoyed. Are you one of the many who avoid car rides, little league games, movies and family dinners because of the effects of acidic foods? Many people are highly sensitive to food. For some, various foods can cause occasional heartburn, for others the "hidden irritant" in foods can exacerbate urinary problems or bowel distress. In most of these cases, the problem lies with the unsuspected acid in the foods. Prelief is a safe, effective over-the-counter product that can help you stay comfortable. Prelief works by taking the acid irritant out of foods, so these foods are less likely to trigger problems. With Prelief you can enjoy life again. Go ahead... take that long car ride, cheer on your favorite little leaguer and watch the entire movie. A trip to the grocery store won't have to include a map to the restroom; a family dinner can be long and lingering! Available in the antacid section at Albertson's, Eckerd, Long's, Meijer, Osco, Publix, Rite-Aid, Savon, Walgreen's and many other fine stores. Also available by phone or www.prelief.com. ¨ Safe. Reliable. Effective. CALL 1-800-994-4711 for literature and a coupon P0212 ©2005 AkPharma Inc. cheeses like bleu, roquefort, edam, brie and cheddar are high in tyramine, as are smoked meats and fish. Beware the double whammy of consuming these foods together with wine or beer. • Wines are also acidic. Champagne and sparkling wines are the most acid of all wines and they also have a higher alcohol content. • Most wines have at least some naturally occurring sulfites, but wineries may add more. Sulfites are known to cause allergic reactions in many people, whether or not they have IC. Some IC patients’ bladders cannot tolerate sulfites. In general, red wines tend to have more than white wines. (Onions, dried coconut and dried fruits may also have sulfites. Beware of the cumulative effect of drinking and eating foods containing these). • Very cheap wines may also have the preservative, potassium sorbate. THE IC OPTIMIST • FALL 08 • 13 Sorbates are used to preserve candied fruits too. Some IC patients say they are sensitive to sorbates. • Drinks with whiskey, gin, or vodka may have less tyramine per ounce than many wines, but more alcohol. The tradeoff may or may not work to your advantage, depending on your body’s pattern of sensitivity. Beware of acid from fruit or carbonation in mixed drinks. (A pinch of salt can “flatten” carbonation—a helpful trick for some people). Of all the problems with alcoholic beverages, acidity is probably the easiest to deal with. Try taking an acid-neutralizer like Tums before drinking. Eating foods containing egg whites or baking soda with your drinks may help curb the effect also. While many IC patients can’t consume any alcohol at all (except when used in cooked foods), a few find they can drink limited amounts of certain things. Everyone’s different. You could start by experimenting with these wines that some ICer’s have successfully tried: Muscatel, Semillon, Tokay, sweet white dessert wines, or non-alcoholic beer (which still contains monoamines, by the way). Try taking an acidneutralizer like Tums before drinking. 3. The office party... If you don’t want your co-workers to know you have a medical problem, you may have to explain or draw attention from your food avoidance. Here are some explanations other IC patients have given: 14 • THE IC OPTIMIST • FALL 08 • I have food allergies. • I ate before I came. • I’m trying an oddball diet and I won’t know whether it will make me lose weight if I “cheat”. • My spouse (or girlfriend/ boyfriend) and I agreed I’d be the designated driver for tonight. • I’m taking an allergy/cold medication that doesn’t mix with alcohol. If you have holiday coping strategies that work for you, especially food-related ones, please e-mail me at [email protected] I’d love to hear about them. May your holiday season be filled with comfort, joy and peace! —Bev © 1998 Bev Laumann Red and White Candy Canes! What could be more in tune with the holiday spirit than peppermint? This recipe (adapted from Martha Stewart’s Living) is scrumptious fun for kids and adults. Quick Peppermint Ice Cream Makes 1 pint 1 pint Haagen-Dazs vanilla ice cream 2/3 cup of crushed peppermint candies or candy canes 1/4 teaspoon peppermint extract Crush peppermint candies by placing between clean kitchen towels (or paper towels) and hitting with a meat hammer, or other heavy object. (About 7 or 8 6-inch candy canes will make 2/3 cup crushed). Sprinkle the extract over the crushed candy. With a large spoon, quickly stir the crushed candy into the ice cream. Ice cream will begin to soften and turn pink, so work quickly. No need to have it completely blended. Return to freezer for an hour or two to re-set and let flavors blend. Serve in fancy bowls, placing an oatmeal or decorated sugar cookie in the ice cream. The key to IC-safeness with this is to use ice cream you know your bladder tolerates, and peppermint candies and extract that contain no artificial sweeteners or stabilizers. Pie variation: Have a chilled, baked 8-inch pie crust ready. Fill with peppermint ice cream (you’ll need a quart). Return to freezer to harden for 3 or 4 hours. You can top it with decorated cookies, carob chips, or cake decors. Or just before serving, place a dollop of whipped cream on each slice. Is Your Car IC Friendly? Finding a comfortable car is often challenging for pelvic pain patients. In the late 1980’s, one of the first comprehensive research studies on interstitial cystitis reported that 50% of IC patients found driving in a car uncomfortable, if not painful. Why? It all comes down to the smoothness of the ride, combined with the comfort of the seats. With their notoriously tight suspensions, small sporty cars, buses and trucks often provide bouncy, rough rides which jar the pelvis and bladder triggering bladder pain and pelvic floor muscle spasms. Softer suspensions, particularly those found in larger cars and SUV’s, absorb the bumps in the road and are far more comfortable for IC’ers. In addition, car seats that are hard and/or have minimal padding, particularly those found in many foreign cars and sports cars, lack cushioning that can help making sitting and long drives more comfortable. When we first covered this topic five years ago, ICN members agreed that larger American made vehicles, particularly sedans and SUV’s, were the most bladder and pelvic friendly because of their very smooth ride. They typically offer thicker, more comfortable cushioning in the seats and backs as well as softer seat covers. Unfortunately, their gas mileage is poor. We spent much of the summer asking IC patients about their experiences with the smaller, more fuel efficient vehicles. Were they comfortable and worth the investment? American Made Cars Not surprisingly, Fords scored quite well. ICN Donna offered “We have a Ford Focus and it’s amazingly comfortable for me.” Claredale reports that she loves the ride of her Ford Explorer. TiffRN83 said “My mustang is great… the seats are comfortable, the seat warmers are in the right place so if I’m flaring, I turn one on to help decrease the pain. Plus it has a smoother ride than my past two cars, both Monte Carlos.” The Chevy Tahoe Hybrid got a rave review by one ICN member, Lfane, who said “It is amazingly comfortable. The farthest we have driven it so far was three hours and I had no problems…. It doesn’t ride like a truck, has a much smoother ride and it has heated seats as well.” Similarly, one member said “I bought a 2007 Pontiac Grand Prix…. It handles turns very well and you can barely feel bumps when you happen to hit one.” The soft, heated seats were a highlight “The seats are the most comfy that I have been in, more so than my dad’s Lincoln.” One man raved about his 2007 Lexus because the seats were so comfortable and very easy to adjust. Chrysler and Dodge faired far more poorly. Claredale offered “I rode in a Dodge Dakota a couple of months ago for a 30 minute ride and by the time I got home, I had to take a pain pill and then take a very hot bath to calm down. I felt every section of the interstate on that car ride.” Still another reported that her family’s Dodge Durango is a “total bladder killer.” ICN President Jill Osborne said “I don’t know why my mother’s THE IC OPTIMIST • FALL 08 • 15 Dodge sedan was so bladder provoking but there were times when, after even just ten minutes in the car, I was almost crying in pain. On the other hand, my Buick Rendezvous is perfect. I can drive anywhere and almost any distance without too much discomfort.” International Cars The international mid-size sedans received better reviews than before. Volvo S40 and S80 sedans received good reviews due, primarily, to their very smooth ride and suspension. NewLife wrote “I test drove a 2008 Volvo S40 and was very impressed.” The Hyundai Azera and Nissan also received rave reviews for the soft, heated seats and “cushy ride.” The Toyota Prius received poor reviews. Two members reported that the seats were too hard and the ride far too bouncy and jarring. A third who won a Prius in a contest offered “We took it on a trip to Florida. Going down, we split the trip up into two 6 hour days and it wasn’t too bad. Coming home, we drove straight through and I thought I wasn't going to make it. I hurt all over. I was really in extreme pain.” The Toyota Camry, regular and hybrid, had much better reviews from several of our participants. ICN member Amaranthe offered “My current car is a Toyota Camry. It has been great. It gets awesome gas mileage, and the seats are comfortable too. Also, it has a smooth suspension so it doesn’t jar me around a lot.” Honda received mixed reviews mostly due to complaints of hard seats. One IC patient reported that the new, small Honda Fit car was surprisingly comfortable and had a smooth ride even though it has a low suspension. The large Honda Element also had a good review “We “Thanks to Bladder-Q, I have my life back again.” —Antoinette Jean NATURAL - SAFE - EFFECTIVE Money Back Guarantee Learn more at www.thenaturalbladder.com 16 • THE IC OPTIMIST • FALL 08 Larger American made vehicles, particularly sedans and SUV’s, were the most bladder and pelvic friendly because of their very smooth ride. have a Honda Element. Its extremely roomy, very comfortable, seats can be laid down to sleep two… gets approximately 29 mpg, incredibly comfortable… Wouldn’t trade it for anything!” Still another patient raved about her new Honda CRV, particularly for the heated seats. Audi, Saab and Mercedes received lukewarm reviews at best. More cars definitely worth a test drive include Buick sedans and SUV’s, as well as the Nissan line of sedans and crossovers. Both the Buick Enclave (which replaced the Buick Rendezvous) and Nissan Murano are well known for their very smooth suspensions and comfortable seating. Don’t forget to drive not only on the freeway but also over bumpy roads. Once you pick two or three strong contenders, see if you can rent one from the dealer or a local car rental service for a few days. Driving it around town is a great way to determine if it will work for you. The one feature we urge you to consider is heated seats. Heat can help to calm and soothe the bladder and pelvic floor muscles during longer drives. Share your car story or review in the ICN Support Forum on our website. Book Review: Confident Choices: A Cookbook for IC and OAB Julie Beyer’s latest book, “Confident Choices: A Cookbook for IC and Overactive bladder” will be a lovely new diet resource for patients around the world. A perfect complement to her first book “Confident Choices: Customizing the IC Diet,” Julie uses this new publication to walk the novice patient through essential IC diet basics in a style that is simple, easy to understand and inherently practical. It’s a perfect resource for patients who are afraid to eat for fear of causing an IC flare. The section on “rescue menus” alone will be greatly appreciated by patients currently struggling with a sensitive bladder. Yes, Virginia, you can eat when you have IC but you With a positive and encouraging tone and style, Julie reminds her readers about key nutrition basics and offers short, concise discussions. must choose your foods carefully. With a positive and encouraging tone and style, Julie reminds her readers about key nutrition basics and offers short, concise discussions. She offers an excellent list of IC friendly food substitutions. For example, pear or blueberry juice can be used in place of lemon juice or vinegar in many recipes. She includes a step by step guide on how to do an elimination diet to determine which, if any, foods you are sensitive to. She offers a wide variety of recipes for breakfast, snacks and appetizers, soups, salads, breads, main dishes, vegetables, pasta, desserts, candies and beverages. One new and great idea she includes is a printable shopping list of IC friendly foods that patients can take to the grocery store to make good, informed decisions about their diet. Some of you may wonder how this book differs from the best selling “A Taste of the Good Life: A Cookbook for an IC Diet,” written by Bev Laumann. Like Bev, Julie has an impressive knowledgebase. You know that you’re reading material that has been created with a tremendous amount of thought and research. Where Bev’s book is ideal for patients who love to cook and spend time in the kitchen, Julie’s books are perfect for patients who want to approach diet simply or who simply don’t want to spend a lot of time cooking. It’s an easy yet very educational read. Bravo Julie for a job very well done! Confident Choices: A Cookbook for IC and OAB is available for $24 or $20.40 for ICN Angel Subscribers. All of the IC diet books are available for purchase through the ICN store. You can buy them online at: http://www.icnsales.com or place your order by phone (707)433-0413. THE IC OPTIMIST • FALL 08 • 17 Book Review: Heal Pelvic Pain Heal Pelvic Pain: The Proven Stretching, Strengthening and Nutrition Program for Relieving Pain, Incontinence, I.B.S. and other Symptoms without Surgery offers readers relief and recovery for pelvic floor disorders through a program of strengthening, stretching and relaxation exercises, massage techniques, nutritional basics, and self-care therapies—without drugs or surgery. The book provides two different exercise programs. One addresses the pain syndromes related to urinary, bowel, or sexual dysfunction— including incontinence, irritable bowel syndrome, urinary and/or bowel frequency, urgency or retention, pudendal neuralgia, prostatitis, endometriosis, pelvic inflammatory disease, and more. The other program addresses pelvic floor muscle weakness and poor coordination resulting in incontinence, pelvic organ prolapse, and/or decreased sexual response. The book is easy to read and use, and offers photos of all of the exercises and massage techniques guide readers every step of the way. Here’s what readers will find in the book: • Programs that can ease the pain and discomfort of bladder, bowel and/or sexual dysfunction without surgery or drugs • A way to relieve pain in an intimate area • Methods for enhancing sex life well into the elderly years • Tips for strengthening the pelvis before, during, and after pregnancy • A muscle-strengthening regimen that boosts sexual pleasure, eliminates incontinence, increases 18 • THE IC OPTIMIST • FALL 08 the body’s core strength and pelvic stability. • Guidelines on foods and beverages that ease discomfort and assist in bladder and bowel disorders • Suggestions for stress- and painreducing home spa treatments • Patient testimonials • A comprehensive resource guide. The book empowers readers with a “symptoms monitor” to track pelvic floor disorders... The book empowers readers with a “symptoms monitor” to track symptoms and the impacts of pelvic floor disorders in daily life. As the reader goes through the exercise and treatment recommendations, he or she can track improvement and progress on the symptoms monitor. Author Amy Stein is the founder of Beyond Basics Physical Therapy in New York City, which specializes in the treatment of pelvic floor dysfunction, pelvic pain, and manual therapy for men, women, and children. She lectures nationwide and has been featured in both print and broadcast media. She is a contributor to the medical textbook, Female Sexual Pain Disorders: Evaluation and Management, and serves on the board of the International Pelvic Pain Society. Healing Pelvic Pain is available for $16.95 or or $14.40 for ICN Angels Subscribers in the ICN Store. You can buy them online at: http://www.icnsales.com or place your order by phone (707)433-0413. Perfect Fall Flavors On these cool, frosty evenings of Autumn, a steaming bowl of rich, thick soup topped with warm, crusty croutons can make a perfect, comforting meal. Luckily, Fall also brings many great vegetables and spices that you can play with, particularly pumpkins, acorn squash, butternut squash, cinnamon, cloves and nutmeg. Here are some very easy, simple and bladder-friendly recipes that can help you celebrate this glorious Fall season. Roasted Butternut Squash Soup 1 medium size butternut squash (about 2 pounds) 3 cups broth (either vegetable or chicken) 2 whole carrots Extra virgin olive oil 1/2 tsp pepper or to taste 2 tsp minched oregano or 1/2 tsp. dried oregano Dash garlic salt (optional) Sour cream (optional) Preheat oven to 350 degrees. Line a baking sheet with aluminum foil. Cut the butternut squash in half lengthwise and remove the seeds. Clean carrots and slice lengthwise. Please carrots and squash (skin side up) and on baking sheet and brush generously with EVOO. Roast in oven for roughly 50 minutes or until tender. Remove from oven and allow to cool slightly. With a spoon, remove the squash from the skin and place (in two batches) into a food processor or blender with small chunks of carrot. Use small amounts of broth to provide enough liquid to blend easily. Blend until smooth and then pour into a soup pan or kettle with the remaining broth. Add pepper and oregano. Cover and simmer for ten minutes, stirring occasionally. Pour into bowls and top with a dollop of sour cream and toasted walnuts. • The carrots add a slightly different flavor. For a pure butternut squash taste, simply leave the carrot out. • If you love garlic, feel free to roast garlic cloves or add a dash of garlic salt to the soup. • If you like creamy soups, add 1/2 cup of milk or half and half to the soup mixture while it’s simmering. • Top with roasted pumpkin seeds. Fast, Homemade Croutons Using a bread of your choice (a sweet French bread is ideal), slice into one inch thick cubes. Coat or spray with a slight amount of butter or margarine. Place in a 350 degree oven for ten minutes, flipping croutons occasionally, until slightly browned. While that is baking, combine 2 tablespoons of grated parmesan cheese, 1 tsp garlic salt (or to taste), 1 tsp paprika, 1 tsp fresh chopped parsley and place into a paper bag. Add hot croutons to the paper bag and shake thoroughly. Serve hot, toasted croutons on a soup of your choice. Baked Acorn Squash Each acorn squash provides two servings (1/2 squash per person). Cut washed acorn squash in half, crosswise or lengthwise, then scrape out seeds and stringy portion. In each hollow, place: 1 tsp. brown sugar 1 tsp. butter 1/2 tsp. cinnamon dash of salt Place upright in a baking pan and add 1/4 inch watch at the bottom of the pan. Bake in a 400 degree oven for roughly an hour or until tender. Remove the cover during the last half hour so that the sugar will carmelize and brown. Serve as is, or for festive occasions, remove the pulp and mash with butter. Place back into hollowed out squash sides and top with a dab of butter and sprinkle of cinnamon or nutmeg. THE IC OPTIMIST • FALL 08 • 19 Roasted Root Vegetables Original Monkey Bread 1-1/2 pounds root vegetables: white potatoes, sweet potatoes, parsnips, carrots, turnips, and/or rutabagas 1 medium onion, peeled and cut into quarters or halves (optional) 4 cloves garlic, unpeeled, tips snipped off so they can be squeezed out after roasting (optional) 2 to 3 Tbsp. extra virgin olive oil 1/2 tsp. salt 1/2 tsp. ground pepper 2 Tbsp. fresh or 1 Tbsp. dry rosemary, chopped 3/4 cup granulated sugar 3/4 cup light brown sugar 2 tsp. cinnamon Dough for 3 loaves of white bread or honey sweetened whole wheat bread (homemade or frozen) 1 stick butter, melted Preheat oven to 450 degrees F. Scrub, peel, and cut vegetables into long, slim julienne strips or as small chunks. Toss vegetables, onion and garlic with EVOO and place in a heavy roasting pan lined with foil. Roast for 30 minutes, stirring occassionally. Add spices, and continue roasting and stirring for another 15 to 20 minutes, or until vegetables are nicely browned. Serve hot. These are a perfect accompaniment to pork chops! This recipe is made all the easier by the many “ready to bake” bread doughs available in most supermarkets! Heavily grease a 10 inch tube cake pan or a pan of your choice. Combine the sugars and cinnamon in a bowl and mix well. Tear off small pieces of dough and roll each piece into a ball. Dip into melted butter and then roll in sugar mixture until coated. Place in pan. Continue coating balls of dough until the pan is 3/4 full. Cover with a kitchen towel and let rise until the dough reaches the top of the pan, roughly 30 minutes. In a 350 degree oven, bake one hour or until a skewr comes out clean. Unmold, serve warm with butter or jam! Half the fun is the family just pulling the pieces of bread off! Quick & Easy Monkey Bread 2 cups Jiffy mix or Bisquick 2/3 cup milk 2 tsp. cinnamon 2 tsp. granulated sugar 1/2 stick of butter, melted Preheat oven to 425 degrees. Combine the sugar and cinnamon in a small bowl and set aside. Blend milk and biscuit mix until a stiff batter is made. With floured hands, make small balls of dough. Roll dough first in the butter and then the sugar mix. Place in a greased 9” pan and bake until golden, approx. ten minutes. Serve hot with butter and jam! Pumpkin Bread This recipe was adapted from a Pumpkin Bread recipe that appeared in a very small cookbook (1980) called the Closet Gourmet written by Casey O’Hara McKinley. In an electric mixer, mix thoroughly: CYSTOPROTEK is a patent-protected, all-natural oral dietary supplement in soft gel capsule form that has been developed and clinically tested to help promote interstitial bladder health.* The anti-inflammatory properties in CystoProtek’s unique natural formula helps reduce the pain and symptoms of interstitial cystitis, while helping replenish the damaged glycosaminoglycan (GAG) protective layer in the bladder. *This statement has not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any diseases. ® PROMOTES BLADDER HEALTH BY REPLENISHING THE PROTECTIVE LAYER OF THE BLADDER* 20 • THE IC OPTIMIST • FALL 08 For more information, or to order CystoProtek go to www.cysto-protek.com or call 1.888.317.0001 1 cup sugar 1/2 cup brown sugar 1 cup strained pumpkin 1/2 cup salad oil 2 eggs 2 cups flour 1 tsp. baking soda 1/2 tsp. cinnamon 1/4 tsp. ginger (scant) 1/2 tsp. nutmeg 1/4 cup water 1/2 tsp. salt Fold in 1 cup raisins. Bake in two buttered loaf pans in a 350 degree oven for 65-75 minutes or until sides pull away. Persimmon Cookies This recipe came from Mrs. Annabel Welch and is an Osborne family favorite. 1/2 cup butter 1 cup sugar 1 beaten egg 1 cup persimmon pulp 1 tsp. vanilla 1/2 tsp. soda 2 cup flour 1/2 tsp. cinnamon 1/2 tsp. nutmeg 1/4 tsp. cloves 1/4 tsp. salt 1 cup raisins 1 cup chopped nuts Preheat oven to 350 degrees. Cream butter and sugar. In a separate dish, mix persimmon pulp and soda. Add to butter mixture with egg. Mix thoroughly, then blend in remaining ingredients. Add raisins and nuts to batter. Drop in spoonfuls on an ungreased cookie sheet. Bake for ten minutes or until golden brown. Pumpkin Waffles Sift together: 2 1/2 cups all-purpose flour 1/3 cup packed light brown sugar 2 1/4 tsp. baking powder 1 tsp. baking soda 1/2 tsp. salt 2 tsp. ground cinnamon 1 tsp. ground ginger 1/4 tsp. ground cloves Whisk: 4 large eggs 1 cup well-shaken buttermilk 1 cup milk 1 cup canned solid-pack pumpkin 3/4 stick (6 Tbsp.) unsalted butter, melted Vegetable oil for brushing waffle iron or cooking spray Preheat waffle iron. Add the dry ingredients to the pumpkin mixture and whisk until just smooth. Brush waffle iron lightly with oil and spoon batter into waffle iron. Cook according to manufacturer’s instructions. Serve hot with your favorite syrup! Pumpkin Bread Pudding 1/2 loaf sweet french bread (or raisin bread) cut in cubes 1 c. canned pumpkin 1/2 c. brown sugar 2 eggs 1 tsp. vanilla 1/2 tsp. ginger 1 can evaporated skim milk Preheat oven to 400 degrees. Place bread cubes in 9 inch, buttered pie plate. In medium bowl, combine pumpkin, brown sugar, eggs, vanilla and ginger. Stir in milk. Pour over bread, coating it with pumpkin mixture. Bake in preheated oven 25 to 30 minutes until knife inserted near center comes out clean. Cut in wedges to serve (8 servings). Hot Mulled Pear Juice 4 cups pear juice 1 cinnamon stick 3 or 4 whole cloves brown sugar to taste* Combine all ingredients in a saucepan over medium heat. Bring to boil and then simmer, briefly, for ten minutes to blend the flavors. Strain and serve hot! Of all the juices, pear juice is the lowest in acid and most bladder friendly. While you can certainly try this drink with full strength juice, you might want to consider diluting it to reduce the overall acid level. *Sugar to taste is optional. THE IC OPTIMIST • FALL 08 • 21 ICN Resource Catalog - December 2008 Interstitial Cystitis Network, PO Box 2159, Healdsburg CA 95448 (707)433.0413 Website: www.ic-network.com www.icnsales.com Living with a bladder, prostate and/or a pelvic disorder can be challenging. Luckily, a wide variety of resources are now available that can help you, today, gather knowledge and gain control over your symptoms. Your purchase underwrites the IC support services that we offer to patients throughout the world. We thank you for your support! Please note that prices are subject to change at any time. ICN Subscriptions Are you looking for the best information on IC/PBS? The IC Optimist Quarterly Magazine provides comprehensive information on the latest IC research, news stories, self-help strategies, the IC diet, clinical trial announcements and much more!! Best of all, your subscription helps to underwrite the more than 300,000 support sessions we provide, at no cost, to patients in need on our website. We couldn’t do it with our subscribers! If you’ve found our IC Optimist magazine and/or our website helpful, please consider supporting our work by becoming an ICN subscriber. ICN Angel Subscriptions $60 per year Includes the IC Optimist quarterly magazine and ICN Annual Special Report by email or print (your choice), as well as 15% off most purchases in our shop except for items that are already discounted such as 3 packs. ICN Gold Subscriptions - $40 per year Includes the IC Optimist quarterly magazine and ICN Annual Special Report by email. ICN Silver Subscribers - $20 per year Includes the IC Optimist quarterly magazine by email. Books On IC/PBS, Diet, Pain Care & Related Conditions New! Confident Choices: A Cookbook for IC & OAB Author Julie Beyer RD has now created an cookbook ideal for patients who are afraid to eat for fear of irritating their bladder. In addition to great menu ideas, she offers many simple yet flavorful recipes Public Price: $24 ICN Angel Subscriber Price: $20.40 Shipping Weight: .75 lbs Confident Choices: Customizing the IC Diet Written by a registered dietitian Julie Beyer RD for IC patients, this book is ideal for patients who are struggling to eat a healthy, balanced diet. Includes many ideas for breakfast, lunch, snacks and dinner. Public Price: $20 ICN Angel Subscriber Price: $17 Shipping Weight: .55 lbs A Taste of the Good Life: A Cookbook for an IC Diet by Beverley Laumann If you’re struggling with diet, “A Taste of the Good Life” explains why foods can bother our bladder, what to avoid, and how to find IC friendly foods! Includes extensive reference lists and wonderful recipes. One of our faves is the Carob Cake. Public Price: $28.50 ICN Angel Subscriber Price: $24.23 Shipping Weight: 1.6 lbs Interstitial Cystitis Survival Guide by Rob Moldwin MD. The #1 book on IC, it covers diagnosis, treatments, pain care and much more. This is THE book that you should bring to every doctors appointment to credibility test proposed treatments. It’s also excellent to share with family and friends. 22 • THE IC OPTIMIST • FALL 08 Public Price: $13.99 ICN Angel Subscriber Price: 11.89 Shipping Weight: .75 lbs A Headache in the Pelvis (5th ed.) by Anderson and Wise Based upon the Stanford Univ. Pelvic Pain Program, this book discusses, in depth, a chronic pain management program for patients with IC, prostatitis and pelvic floor dysfunction. Public Price: $32.95 ICN Angel Subscribers: $28 Shipping Weight: 1.5 lbs Please Understand: The IC Guide For Partners Written by two dedicated, loving couples (the Sandlers & The Gliddens), this unique book offers a sensitive and empowering discussion of the issues which can affect and/or intrude upon our lives. Public Price: $11.99 ICN Angel Subscribers: $10.19 Shipping Weight: .23 lbs ICN Special Report Series Our annually produced special reports receive rave reviews for providing an easy, in-depth review, of topics which IC patients struggle with. (1) ICN Special Report on the IC Diet (2) ICN Special Report on Managing IC Flares, 2nd ed. (3) ICN Special Report on Bladder Pain Public Price: $10.00 ICN Angel Subscribers: $8.50 Shipping Weight: .25 lbs Overcoming Pain by A. Platt, Jr., P.A.-C., S. Platt, M.D., and C. Hedrich, R.P.T. Overcoming Pain is a wonderful resource for patients struggling with chronic pain. The book discusses pain treatments, particularly medications and their appropriate use and dosages as well as pain procedures, the use of opiates and alternative therapies. It also offers practical suggestions on how to work with physicians as well as handling a daily life while struggling with pain. Public Price: $16.95 ICN Angel Subscriber Price: $14.40 Shipping Weight: .88 lbs Overcoming Overactive Bladder For the 17 million people in the US who suffer from overactive bladder, this book includes the latest physical techniques and strategies for coping with overactive bladder. Public Price: $16.99 ICN Angel Subscriber Price: $14.44 Shipping Weight: .52 lbs First Year: IBS by Heather Van Vorous The First Year: IBS offers a comprehensive and sympathetic approach to managing irritable bowel syndrome (whether you're newly diagnosed or have been struggling for years), by an author who has dealt with the disorder since childhood and prevailed. We recommend this book highly! Coping with Anxiety It is very normal to experience anxiety when faced with a new, confusing and/or painful condition. This book offers ten simple ways to relieve anxiety, fear and worry. Don't let anxiety dominate your life. Do something about it today! Public Price: $16.99 ICN Angel Subscriber Price: $14.44 Shipping Weight: .47 lbs Public Price: $15.95 ICN Angel Subscriber Price: $13.56 Shipping Weight: .5 lbs The Feel-Good Guide to Fibromyalgia and Chronic Fatigue Syndrome People wrestling with fibromyalgia and chronic fatigue syndrome don't want a bunch of political baloney about how misunderstood and hard to control their condition is-they want to feel good again. This book helps them build a personalized treatment plan that really works, using any and all treatment resources. Healing Pelvic Pain New! Written by Amy Stein PT, Heal Pelvic Pain offers readers relief and recovery for pelvic floor disorders through a program of strengthening, stretching and relaxation exercises, massage techniques, nutritional basics, and self-care therapies Public Price: $16.95 ICN Angel Price: $14.40 Shipping Weight: .75 lbs Public Price: $14.95 ICN Angel Subscriber Price: $12.71 Shipping Weight: .64 lbs Alternative (OTC) Food Supplements Prelief (120 tablets) This is the most popular acidreducing supplement used by both IC and IBS patients to help them eat a more balanced diet. Ingredients: calcium glycerophosphate, magnesium stearate Public Price: $12.99 ICN Angel Subscriber Price: $11.04 Shipping Weight: .15lbs CystaQ - 60 capsules CystaQ is one of the “old favorites” of urology patients who find that quercetin helps to reduce inflammation in their bladder. In Fall 2002, yet another study was presented by Kym Kanaly MD et al. which demonstrated that CystaQ oral therapy was 'well tolerated and provided significant improvement of bladder symptoms in patients with IC and vulvodynia.' Ingredients: Quercetin, Bromelain, Papain, Black Cohosh, Wood Betony, Passionflower, Valerian & Cranberry Powder & Gelatin. Public Price: $39.99 ICN Angel Subscriber Price: $33.99 Shipping Weight: .17 lbs Algonot Plus - 120 soft gels The first supplement developed by IC researcher Dr. Theoharis Theoharides. It is a natural product, free from artificial colors or flavors, corn, milk products, preservatives, salt, starch, sugar, wheat, yeast or beef byproducts. Ingredients: Chondroitin sulfate (300mg from shark cartilage), Glucosamine Sulfate (300mg from shellfish chitin), Quercetin (300mgs from the saphora plant) and olive kernal seed oil, gelatin (pork), beeswax, soy lecithin, glycerin, purified water, titanium dioxide and carob extract. If you are allergic to eggs, fish or olive oil you should consult your doctor before taking this product. Public Price: $39.00 ICN Angel Subscriber Price: $33.15 Shipping Weight: .6 lbs Azo Standard May relieve symptoms such as pain, burning, urgency and frequency of urination associated with irritation of the lower urinary tract. Contains the #1 ingredient prescribed by doctors and recommended by pharmacists for urinary discomfort. Beware, you will pee orange! Ingredients: Phenazopyridine Hydrochloride Public Price: $9.99 ICN Angel Subscriber Price: $8.49 Shipping Weight: .06 lbs THE IC OPTIMIST • FALL 08 • 23 CystoProtek - 120 soft gels CystoProtek combines the anti-inflammatory properties of quercetin, glucosamine sulfate and rutin in a unique natural formula with the compounds chondroitin sulfate and sodium hyalonurate that help replenish the GAG layer in the bladder. A retrospective open label study of Cystoprotek in IC (released in 10/06) found that the product is beneficial and well tolerated in PBS/IC. The 269 patients participating in the study experienced a 51.2% inhibition of their IC symptoms. Ingredients: Chondroitin sulfate (300mg from shark cartilage), Glucosamine Sulfate (280mg from shellfish chitin), Quercetin (260mgs from the saphora plant), Rutin (40mgs from the saphora plant), sodium hyaluronate (20mg from chicken) and olive kernal extract, gelatin (pork), beeswax, soy lecithin, glycerin, purified water, titanium dioxide and carob extract. If you are allergic to eggs, fish or olive oil you should consult your doctor before taking this product. Public Price: $39.00 ICN Angel Subscriber Price: $33.15 Shipping Weight: .6 lbs DH Quercetin with Aloe Public Price: $19.49 ICN Angel Subscriber Price: $16.57 Shipping Weight: .15 lbs DH Glucosamine and Chondroitin with Aloe Public Price: $26.49 ICN Angel Subscriber Price: $22.52 Shipping Weight: .32 lbs DH Calcium & Vitamin D with Aloe Public Price: $13.49 ICN Angel Subscriber Price: $11.47 Shipping Weight: .30 lbs DH Buffered Vitamin C with Aloe Public Price: $14.49 ICN Angel Subscriber Price: $12.32 Shipping Weight: .30 lbs Manno Max D-Mannose Powder If you’re struggling with recurrent e-coli based bladder infections (as confirmed by urine cultures), D-Mannose is an interesting option to explore. Research has demonstrated that d-mannose (found in cranberries and blueberries) inhibits the ability of e-coli to cling to the bladder wall. Public Price: $26.99 ICN Angel Subscriber Price: $22.94 Shipping Weight: .30 lbs Manno Max D-Mannose Tablets If you’re struggling with recurrent e-coli based bladder infections (as confirmed by urine cultures), D-Mannose is an interesting option to explore. Research has demonstrated that d-mannose (found in cranberries and blueberries) inhibits the ability of e-coli to cling to the bladder wall. Contains 60 tablets. Ingredients: D-Mannose, magnesium stearate Desert Harvest Aloe Desert Harvest conducted a formal clinical trial to study the effectiveness of aloe in reducing bladder irritation and IC symptoms. In a double blind, placebo controlled clinical trial in IC patients, 87% of participants received relief from at least one symptom of their IC. 50% received relief from all or most of their symptoms. Ingredients: Whole Leaf Aloe Vera Public Price: $34.99 ICN Angel Subscriber Price: $29.74 Shipping Weight: .20 lbs *These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.* Public Price: $37.99 ICN Angel Subscriber Price: $32.29 Shipping Weight: .20 lbs Home Urine Testing Kits Azo Home UTI Test Kit (3 Test Strips) When an IC flare feels exactly like the worlds worst UTI, it’s only normal to guess that it’s an infection rather than a simple flare. Some IC patients have taken antibiotics needlessly because their urine cultures were actually negative for infection. Having a UTI Test Kit on hand can be a useful tool in helping you to 24 • THE IC OPTIMIST • FALL 08 determine when to request a urine culture. This new urine test kit checks for Nitrite AND Leukocytes (white blood cells) in the urine, the same UTI test pads that most doctors use. Easy to use and read in just 2 minutes! Public Price: $12.99 ICN Angel Subscriber Price: $11.04 Shipping Weight: .20 lbs Alkalive pH Strips (80 Test Strips) Manufactured by pH Ion, this new test kit will allow you to test the acid or alkaline level of your urine. Public Price: $8.99 ICN Angel Subscriber Price: $7.64 Shipping Weight: .20 lbs IC Friendly Beverages Diet modification remains the foundation of IC self help! The foods and beverages we consume can have a significant effect on the severity of our symptoms although these symptoms will vary from person to person. We offer foods and beverages that are more easily tolerated by tender bladders. From low acid coffees to low acid fruit products, each item was selected for with thought, care and, of course, taste testing. Euromild Low Acid Coffee Ground Roast (Specify Decaf or Regular) Euromild was brought to the ICN years ago by a patient who had tried it and found it mild enough for her bladder. We've since sold this to thousands of IC patients who have found it to be far more bladder friendly than others! Makes about 40 cups. Comes in a resealable fresh lock bag Tummy Mint This blend contains just the right combination of sweet peppermint, delicately floral chamomile, and fennel to calm your stomach quickly but gently. Ingredients: Peppermint leaves, Chamomile flowers, Fennel seed, licorice root, and natural mint extract (contains soy lecithin). Public Price: $2.99 ICN Angel Subscriber Price: $2.54 Shipping Weight: .09 Public Price: $6.99 ICN Angel Subscriber Price: $5.94 Shipping Weight: .4 lbs Puroast Low Acid Coffees The Puroast® Process is an all-natural process that does not create the acids that affect the stomach. Available in ground and whole bean, decaf and regular, Puroast offers a wide variety of low acid coffees. Whole bean orders should be placed on our website or phoned in! Regular Roast (House Blend, Dark French Roast, Hazelnut, Vanilla) Public Price: $9.99 ICN Angel Subscriber Price: $8.49 Shipping Weight: .85 Decaf Roast (House Blend or Dark French Roast, Hazelnut, Vanilla) Public Price: $10.99 ICN Angel Subscriber Price: $9.34 Shipping Weight: .85 Peppermint Tea by Yogi Teas A very popular tea, peppermint is known to calm spasms in the gut, soothe indigestion, stimulate appetite, ease travel and calm morning sickness. caffeine-free INGREDIENTS: organic peppermint leaf Public Price: $4.99 ICN Angel Subscriber Price: $4.24 Shipping Weight: .15 Celestial Seasonings Gingerbread Spice Herbal Tea This roasted carob is perfect for the fall and winter with rich, ginger, cinnamon flavor! 100% Natural! INGREDIENTS: listed on our website Public Price: $4.99 ICN Angel Subscriber Price: $4.24 Shipping Weight: .18 Celestial Seasonings After Dinner Teas These roasted carob teas are light and flavorful. Comes in three flavors: Almond Sunset, English Toffee and Vanilla Hazelnut! INGREDIENTS: listed on our website Public Price: $4.99 ICN Angel Subscriber Price: $4.24 Shipping Weight: .18 Knudsen Organic Pear Juice Boxes (3 pack) This appears to be one the lowest acid juices that we've found. INGREDIENTS: listed on our website Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: 1.75 lbs. IC Friendly Foods Hero Blueberry Preserves A blueberry preserve made by the Swiss company Hero - all natural ingredients, no preservatives, no artificial flavors or colors - and great blueberry flavor. 12 oz. INGREDIENTS: blueberries, sugar, glucose syrup, fruit pectin, citric acid. Public Price: $5.49 ICN Angel Subscriber Price: $4.67 Shipping Weight: 1.2 lbs Pear-Pear or Pear-Blueberry Bars box (16 bars) This 100% natural all-fruit snack bar friendly snack bar tastes great, is fat free, contains no cholesterol, is low in sodium and is a good source of dietary fiber. Contains no artificial ingredients, flavorings or preservatives. This bar is the equivalent of eating two fresh pears! INGREDIENTS: listed on our website Public Price: $20.99 ICN Angel Subscriber Price: $17.84 Shipping Weight: 1.5 lbs THE IC OPTIMIST • FALL 08 • 25 Dr. Oetker's Organic Muffin Mixes Our favorite muffins are light, flavorful and sinful without irritating our bladders. They are also low in sugar and don’t have that chemical aftertaste found in typical brand name mixes. Perfect for a Sunday brunch, an afternoon tea or just sitting with a book and a cup of peppermint tea. Comes in four flavors: Carrot, Oatmeal, Corn and Apple Cinnamon. INGREDIENTS: listed on our website! Makes 12 muffins Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: 1.00 lb Dr. Oetker's Organic Vanilla Cake Mix This wonderful cake mix tastes like a homemade vanilla wedding cake. It’s absolutely yummy and what we use for all of our family celebrations. Best of all, it doesn’t have any of that cloying chemical aftertaste found in most cake mixes. This cake is definitely yummy! INGREDIENTS: organic wheat flour, organic cane sugar, baking soda, cream of tartar, salt, locust bean gum, organic vanilla flavor, natural flavor. Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: 1.00 lb Dr, Oetker's Organic Vanilla Icing Mix A perfect match to the cake mix, this icing mix tastes like homemade butter cream frosting. It’s very easy to make, is easily spreadable and covers a normal sized cake. Ingredients: Organic icing sugar, salt, organic vanilla flavor (contains gum arabic). Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: 1.00 lb Bob’s Red Mill Homemade Gingerbread Mix Using stone ground organic whole wheat pastry flour, a special blend of premium spices and natural cane sweetener, this easy to prepare cake is moist, rich, delicious and full of the nutritious whole grains. It has a mild yet flavorful taste! INGREDIENTS: organic whole-wheat pastry flour, brown sugar, organic evaporated cane juice, organic unbleached white flour, organic wheat gluten, dried molasses. organic ginger, cinnamon, baking soda, sea salt, baking powder, allspice. Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: 1.00 lb Alice’s Stick Cookies (4 oz) When we sampled this cookie, we fell in love. It has a light, satisfying toffee flavor that is wonderful! It definitely deserved its award as Best Cookie of 2004 and 2006. ! INGREDIENTS: flour, malted barley flour, niacin, thiamine, vitamins B1 and B2, folic acid, butter, sugar, imported cane sugar syrup, baking soda and vanilla extract. NO EGGS, NUTS OR 26 • THE IC OPTIMIST • FALL 08 PEANUT OIL. Public Price: $5.95 ICN Angel Subscriber Price: $5.06 Shipping Weight: .25 lbs Dr. Oetker’s Oatmeal Cookie Mix This cookie mix flies off the ICN shelves for a good reason. It delivers pure, unaltered flavor in every bite of purely delicious oatmeal cookies. Add our carob chips for a fun alternative. INGREDIENTS: organic wheat flour, organic cane sugar, organic rolled oats, salt, baking soda. Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: .9 lbs Almond Caramel Chews from Nunes Farms While chocolate is a no-no, caramel is completely IC friendly and these organic chews are just what you need to satisfy that craving for something sweet. INGREDIENTS: Cream, Sugar, Corn syrup, roasted almonds, milk, vanilla, salt, lecithin. Public Price: $4.99 ICN Angel Subscriber Price: $4.24 Shipping Weight: .60 lbs New! Soft Black or Red Licorice from Lucky Country All Natural soft, smooth black or red licorice from gourmet licorice producer, Lucky Country. Two flavors: Black or Red INGREDIENTS: molasses, wheat flour, cane sugar syrup, sugar, coconut oil, glycerin, licorice extract, soy lecithin, natural flavor, natural colors, salt. Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: .4 lb Honey Essence English Toffee From the rich, buttery centers made with fresh-from-the-hive honey, grade A almonds and farm-fresh butter to the delectable hand-dipped carob and almond coating - this is truly English Toffee Extraordinaire! Ingredients: Center honey, almonds, butter, natural flavors, salt, and baking soda. Carob coating: carob powder, nonfat dry milk, whey, palm kernel oil and soy lecithin. Public Price: $14.99 ICN Angel Subscriber Price: $12.74 Shipping Weight: .65 lb Honey Essence Honeymoons A celebration of our two favorite sensations, crunchy and chewy. Decadent honey, caramel and mixed nuts (almonds, cashews and pecans) - hand-dipped in carob. Ingredients: honey, butter, cream, pecans, carob powder, cashews, almonds. palm kernel oil, dry milk, whey, lecithin, vanilla, algin, agar, and natural flavors. Public Price: $14.99 ICN Angel Subscriber Price: $12.74 Shipping Weight: .75 lb Carob Chips (Vegan) If you’re missing your fave chocolate chip cookie, never fear! Carob chips are IC friendly, taste wonderful and make great cookies or cakes! These vegan chips contain no dairy ingredients, no refined sugars, and no harmful trans fats. Ingredients: Whole grain malted barley and corn, fractionated palm kernal oil, carob powder, soy lecithin. Public Price: $4.99 ICN Angel Subscriber Price: $4.24 Shipping Weight: .65 lb Goldie’s Carob Bar If you miss your favorite chocolate bars, these are a great, IC Friendly alternative. Two flavors: Rice Crunch or Plain. Contains no refined sugar, no preservatives, no chocolate, cocoa or caffeine and tastes great. 6.5 inches long by 3 inches wide. INGREDIENTS: barley malt, fractionated palm kernel oil, carob powder, rice crisp (rice, barley malt), soy lecithin. Carob Powder Do you miss making chocolate cake or cookies?? Have you ever tried baking with carob?? It's wonderful, especially the carob cake recipe found in A Taste of the Good Life! Use as an equal replacement for cocoa in your favorite recipes, or use three tablespoons carob powder plus one tablespoon water in place of each square of chocolate. Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: .22 lb Public Price: $5.49 ICN Angel Subscriber Price: $4.67 Shipping Weight: 1.20 lbs. CD’s and DVD’s Guided Imagery for Relaxation for IC and Pelvic Pain Created by a Nurse Practitioner at William Beaumont Hospital (Michigan), this CD was developed specifically for patients with IC, pelvic pain and pelvic floor dysfunction. In a research study, more than 45% of the group using this CD twice a day were moderately or markedly improved. In addition, pain scores and urgency significantly decreased. We hope that you benefit from this CD and suggest listening to track 2 'Letting Go' once or twice a day or especially during IC flares. Public Price: $15.00 ICN Angel Subscriber Price: $12.75 Shipping Weight: .20 lbs. New Dawn Pilates For People with Pelvic Pain Created for patients struggling with pelvic pain disorders, this DVD is ideal for individuals who are seeking new, gentle exercises that will not flare their symptoms. Because many patients can't perform long, intense workouts, this DVD has shorter segments, which allows patients to personalize their workout according to their capabilities. In addition to a 47 minute complete workout, it also offers targeted workouts for warming up, arms, abs & back and legs. Public Price: $29.99 ICN Angel Subscriber Price: $25.49 Shipping Weight: .20 lbs. Bladder & Prostate Friendly Chair Cushions One of the great frustrations of having interstitial cystitis, overactive bladder, prostatitis, vulvodynia, prostatodynia, pudendal neuralgia and/or pelvic floor disorders is that sitting can be excruciatingly uncomfortable. These cushions can definitely help. Bladder & Prostate Friendly Chair Cushion This unique design, created originally for patients with broken tailbones, happens to work almost perfectly for patients with IC, urethral and/or general tenderness because of a deep groove that fits comfortably under the crotch area and reduces pressure to those tender tissues. We offer FOUR cushions of varying firmness. The cushions are 16 inches wide by 14 inches deep. Inside, you'll find firm, supportive side sections with a flexible, soft, grooved foam that reduces pressure on the crotch, urethra, prostate, etc. The cushions are covered with a durable dark blue poly-cotton cover. Cushion Sizes: B-SOFT: This cushion is made from 2 inches of soft foam and is best for those from 75-125 lbs. C-MEDIUM: This cushion is made from 3 inches of soft foam and is best for those from 125-175 lbs. D-FIRM: This cushion is made from 2 inches of firm foam and is best for those from 175-225 lbs. E-EXTRA FIRM: This cushion is made from 3 inches of firm foam is best for those from 225-275 lbs. Public Price: $22.99 ICN Angel Subscriber Price: $19.54 Shipping Weight: 1.75 lbs THE IC OPTIMIST • FALL 08 • 27 Heating Pads BodiHeat Heating Pads – Three Pack This are, by far, the most popular heating pads that we will. Imagine a heating pad that lasts for 12 hours, is light and can adhere to the outside of your undergarment. We've found it! Made with the same technologies used for the tiny heating pads used in gloves and shoes during the winter months, this pad is much larger and has an adhesive backing. One time use only, it lasts for 12 hours! EndoFEMM Washable Cover The EndoFEMM™ Pad WASHABLE COVER is designed as a protective barrier for the heating/cooling pad when placed in the microwave or freezer and keeps the pad clean. Public Price: $3.99 ICN Angel Subscriber Price: $3.39 Shipping Weight: .26 lbs Public Price: $36.99 ICN Angel Subscriber Price: $31.44 Shipping Weight: 3.57 lbs BodiHeat Heating Pad – Ten Pack This deeply discounted pack contains a total of thirty onetime use heating pads! (Not eligible for angel discount) Warm Whiskers Wraps These adorable heating pad will cradle your body with gentle warmth and fragrant herbs. Works wonders on stiff necks, back spasms, poor circulation and arthritic pain. Heat in the microwave for 90 seconds and soothing moist heat will work on sore muscles for about an hour.. Choose One: Black and White Cat or Tan Bunny. Public Price: $6.99 ICN Angel Subscriber Price: $5.94 Shipping Weight: .20 lbs Warm Whiskers Sleepy Pete Lamb This lazy lamb has a microwaveable insert filled with buckwheat and lavender. Just the right size to soothe an aching back or defrost cold aching feet. Sleepy Pete can also be used to warm a child's bed. Made from fleecy plush with a velvety face and feet. 24' long Public & Subsriber Price: $37.50 Shipping Weight: 2.6 lbs EndoFEMM Microwaveable Heating Pad The EndoFEMM™ Pad is designed specifically for women & girls who suffer from chronic pelvic pain from Adhesions, Endometriosis, Irritable Bowel Syndrome (IBS), Interstitial Cystitis (IC), Menstrual Cramps, and Vulvodynia. With seven compartmentalized sections and "kick stand" bottom, the pad design provides even heating or cooling and a shape that doesn't shift while gently hugging the pelvic area. Covered with supple polyester fleece that is super soft against the skin. Comes in a lavender color Pad Dimensions: 16.0"W X 10.5"H Public Price: $29.99 ICN Angel Subscriber Price: $19.54 Shipping Weight: 1.75 lbs Public Price: $36.99 ICN Angel Subscriber Price: $31.44 Shipping Weight: 2.63 lbs Warm Whiskers Cat Hot Water Bottle This cute cat plush cover turns the traditional water bottle into something magical. It¹s great for cold nights, sore muscles, aching heads and icy toes. Cozy plush chenille cover helps retain the heat. Bottle included. 15" tall. Public Price: $28.99 ICN Angel Subscriber Price: $24.64 Shipping Weight: 1.25 lbs Restroom Supplies Perineal Wash Bottle Are you struggling with urine burn?? This clear, empty wash bottle is one of the most effective ways to reduce that irritating sensation. Just fill with water and rinse yourself off after you use the restroom! Natracare Intimate Wipes This soft, cotton wipe contains natural plant extracts of Calendula and Chamomile. Alcohol and paraben free, biodegradable with no synthetic preservatives. 12 wipes in a portable, self-closing packet Public Price: $2.99 ICN Angel Subscriber Price: $2.54 Shipping Weight: .06 lbs Public Price: $4.49 ICN Angel Subscriber Price: $3.82 Shipping Weight: .19 lbs Travel John Patients who struggle with driving in a car, or who are concerned about finding a restroom quickly, will find the Travel John a great option. They are small, will easy fit in a purse and fits comfortably over the urethra so that you can void easily. Urine quickly solidifies thus creating no leakage. Don't let IC isolate you at home. Comes in plastic packs of three! Seventh Generation Baby Wipes This product came highly recommended by several IC patients who found them soothing 'down there,' particularly after using the restroom. Chlorine free and unscented, these wipes are moistened with aloe vera, vitamin E and water. Contains 40 unscented cloth wipes, perfect to fit in a purse or glove compartment. Public Price: $7.50 ICN Angel Subscriber Price: $6.38 Shipping Weight: .50 lbs 28 • THE IC OPTIMIST • FALL 08 Public Price: $4.99 ICN Angel Subscriber Price: $4.24 Shipping Weight: .55 lb IBS Products IC patients struggle with IBS symptoms including diarrhea, constipation and/or a combination of the both. Heather Van Vorous, author of the best selling book on IBS: 'First Year: IBS', has a product line that can help reduce IBS symptoms and discomfort. Heather’s Tummy Tamers: Acacia Fiber Acacia fiber,is 100% soluble, soothing and ideal for patients struggling with IBS. Clinical studies have shown that soluble fiber helps soothe and regulate the bowel, relieves IBS abdominal pain and cramping and alleviates BOTH diarrhea and constipation. It is safe and healthy for daily, lifelong use and has no gluten, sugar, salt, artificial sweeteners, citric acid, oxalates, or yeast. Ingredients: organic acacia Heather’s Tummy Tamers: Peppermint Oil Capsules A recent survey of clinical trials declared peppermint oil capsules the 'drug of first choice' for IBS patients with constipation or diarrhea, to alleviate general symptoms, and to improve quality of life. Peppermint helps relieve abdominal pain, diarrhea, and urgency from IBS. 90 capsules per bottle. Ingredients: peppermint oil extract, ginger oil, fennel oil, gelatin, glycerine, enteric coating, water, carob. Public Price: $19.99 ICN Angel Subscriber Price: $16.96 Shipping Weight: 1.24 lbs Public Price: $12.95 ICN Angel Subscriber Price: $11.00 Shipping Weight: .16 lbs Dry Mouth Products Dry mouth can be a very uncomfortable side effect of common IC treatments. But dry mouth can also have an unexpected consequence, a potential increase in dental cavities. The Biotene line of products can help. Biotene Dry Mouth Gum Biotene Dry Mouth Gum effectively helps to reduce harmful bacteria and plaque while relieving oral dryness. Contains natural salivary enzyme protection and protects between brushings in sugar-free, mint flavored gum pieces. Contains no saccharin. Ingredients: listed on our website. Net Contents: 16 pieces Public Price: $2.69 ICN Angel Subscriber Price: $2.29 Shipping Weight: .10 lbs Biotene Dry Mouth Liquid Moisturizer Biotene Dry Mouth Moisturizer is a refreshing liquid solution that quickly diminishes dry discomfort, mouth odors, and other symptoms of dry mouth. Sodium lauryl sulfate free with a fresh and appealing flavor. Contains five moisturizers and 18 amino acids and proteins plus calcium and omega-3. Ingredients: listed on our websitee. Public Price: $8.99 ICN Angel Subscriber Price: $7.64 Shipping Weight: .20 lbs Biotene Sensitive Toothpaste with Dry Mouth Protection Biotene Sensitive Toothpaste helps protect against tooth sensitivity while fighting cavities with gentle dry mouth protection. Sodium lauryl sulfate free with a fresh and appealing flavor. Active Ingredients: listed on our website Public Price: $8.99 ICN Angel Subscriber Price: $7.64 Shipping Weight: .33 lbs SuperLysine Cold Stick Use everyday to protect your lips from the sun, a common cold sore trigger. Contains all the same healing, relief giving and preventive nutrients as the ointment.. This moisturizing petroleum-free convenient Coldstick also heals cracked or chapped lips. It can be worn under lipstick. Apply as often as needed. Public Price: $5.99 ICN Angel Subscriber Price: $5.09 Shipping Weight: .05 lbs Personal Products Very Private Body Wash Very Private pH balanced Body Wash is a skin-friendly, low sudsing cleansing and conditioning formula for the overall body and the intimate area. It leaves skin feeling fresh, clean, and helps prevent irritations and infections in the intimate area. Hypoallergenic, fragrance free, dermatologist tested and approved. Ingredients listed on our website. 6 fl oz. and enhance the pleasure of intimacy. Ingredients listed on our website Public Price: $14.95 ICN Angel Subscriber Price: $12.71 Shipping Weight: .25 lbs Public Price: $14.95 ICN Angel Subscriber Price: $12.71 Shipping Weight: .50 lbs Desert Harvest Aloe Vera Personal Gel Desert Harvest Aloe Vera Personal Gel is a completely natural, chemical-free personal lubricant that can be used for intercourse or internal physical therapy. Ingredients: listed on our website. Very Private Intimate Moisture Very Private Intimate Moisture feels and functions like a woman's own moisture to relieve vaginal dryness instantly Public Price: $11.99 ICN Angel Subscriber Price: $10.19 Shipping Weight: .35 lbs THE IC OPTIMIST • FALL 08 • 29 IC Resource Guide Order Form Quantity Item Description Weight Amount Subtotal SHIPPING & HANDLING (US Priority Mail) Please add up the total weight for your order and enter the appropriate shipping fee. International orders should be phoned in for an international shipping estimate. 0 to 1 lb. ………. Add $4.80 3.1 to 4 lbs …….. Add $14.25 1.1 to 2 lbs …….. Add $8.25 4.1 to 5 lbs …….. Add $16.80 2.1 to 3 lbs …….. Add $11.40 Your shipping rate may be reduced in our offices if your order will fit into a flat rate envelope or box. For a shipping estimate, please call us! Shipping TOTAL AMOUNT DUE Name: ________________________________________________________________________________________ Address: ______________________________________________________________________________________ City: _____________________________________________________ State: _____________ Zip: ______________ Home Phone: _________________________________ E-mail: ___________________________________________ PAYMENT METHOD (Circle One: Check or Credit Card) Credit Card Number: ______________________________________________________________________________________ Name on Card: _________________________________________________ Expiration Date: ____________________________ 3 digit security code from signature strip on back of card: ___________________________________________________________ Signature: _____________________________________________________ Today’s Date: _______________________________ Checks or money orders should be payable to the ICN in U.S. Dollars. Please allow 3 to 4 weeks for delivery. RETURN POLICY - We can provide a credit card refund for items returned within two weeks, we provide a store credit for items returned within 15 to 30 days of purchase. We cannot provide refunds or credits for items returned after thirty days. Items that are NOT returnable include: all food items, items with broken security seals (supplements, audiotapes, CD’s, DVD’s). Chair cushions with broken protective covers. To place your order, please fill out the form above and mail to: Interstitial Cystitis Network, PO Box 2159, Healdsburg CA 95448 USA Phone Orders: (707)433-0413 www.icnsales.com 30 • THE IC OPTIMIST • FALL 08 About Us The Interstitial Cystitis Network is a health education company dedicated to interstitial cystitis and other pelvic pain disorders. Our mission is to present the best research, information, and support directly into the homes and offices of our users (patients, providers & IC researchers). In addition to our magazines and newsletters, the ICN offers the only nationwide support services for patients in the USA & Canada, currently providing more than 300,000 support sessions a month via our website (http://www.ic-network.com), Our contact information: Interstitial Cystitis Network PO Box 2159 Healdsburg, CA 95448 USA. Orders: 707.433.0413 Patient Assistance: 707.538.9442 FAX: 707.538.9444 This IC Optimist is published four times a year and is available by US Mail ($60/year) or e-mail ($20 Silver or $40 Gold Subscriptions). Professional subscriptions are also available. Material contained in the IC Optimist is copyrighted, all rights reserved. It may not be reproduced in whole, or part, without advance written permission. Reprint requests should be directed to: [email protected] What is IC? Interstitial cystitis (IC), also known as painful bladder syndrome or bladder pain syndrome, is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). Pain levels can range from mild tenderness to intense, agonizing pain. Pain typically worsens as the bladder fills and is then relieved after urination. Pain may also radiate to the lower back, upper legs, vulva and penis. Women's symptoms may fluctuate with their menstrual cycle, often flaring during ovulation and/or just before their periods. Men and women may experience discomfort during or after sexual relations. IC affects patients of all ages, races and cultures. It is found on every continent in the world. Though it was previously thought to be a disease affecting mostly women, new studies suggest that men suffering from chronic non-bacterial prostatitis may also have IC, thus dramatically expanding the population data. It is not unusual for IC to run in families, nor for patients to struggle with a syndrome of related conditions including: IBS, anxiety disorder, vulvodynia, pelvic floor dysfunction, allergies, migraines and fibromyalgia. There are many treatments and self-help strategies now available that can help improve bladder symptoms dramatically. One excellent place to gather information is on the IC Network website (http://www.ic-network.com), where you can read extensive articles on IC as well as participate in our support forum and chats. We welcome you! We believe in you! You are not alone! THE IC OPTIMIST • FALL 08 • 31 My Mom Has Interstitial Cystitis A PAINFUL BLADDER STORY Ages 6+ includes ten fun home activities & a big word hunt! Helping children understand IC, bladder basics, the IC diet, doctor visits, medication safety and how they can help around the house. LEail B A VA- I$L10 by em A t prin NOW 0 in Written By Jill Heidi Osborne, MA 5 $12.
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