The IC Underground

Well, what can I say. I, for one, have had bladder symptoms since childhood. I had a severe bladder infection during the christmas holiday when I was in 7th grade that led to several years of frequency and urgency. I can still remember how hard it was to fall asleep because I always felt as if I needed to urinate. My bladder was sooooo tender. So, could have it contributed to the IC?? I think it was probably early IC and had I known about diet back then I would have done many things differently… err… like not have urethral dilations ever week for two years. Yow, those hurt. - Jill

Monday, 08 December 2008

Department of Urology, Ministrelli Program for Urology Research and Education, William Beaumont Hospital, Royal Oak, Michigan.

To explore the prevalence of recurrent urinary tract infection and elimination difficulties experienced in childhood and adolescence in adult women with interstitial cystitis/painful bladder syndrome (IC/PBS) and community controls. The relationship between dysfunctional voiding and bowel symptoms in early life and the development of IC/PBS is not clear.

A questionnaire was developed and mailed to 406 women with IC/PBS (patients) and 5000 community-dwelling controls. The demographic, personal, and family health history data and the urinary and bowel symptoms experienced in childhood, adolescence, and adulthood were collected. The data were analyzed using the Student t test and multiple logistic regression analysis.

A total of 215 patients (53%) and 823 controls (16%) returned the questionnaires (controls with a previous IC/PBS diagnosis or not meeting the inclusion criteria for either group were excluded from analysis). The 215 patients, 126 controls reporting IC/PBS symptoms but no diagnosis, and 464 asymptomatic controls were compared regarding symptoms and events experienced in childhood and adolescence. Statistically significant differences were seen among the groups for recurrent urinary tract infection (P < .0001) and frequent antibiotic use (P < .0001) in childhood and for all symptoms in childhood and adolescence, including trouble starting the urinary stream (P < .0001 for both), urgency (P < .0001 for both), retention (P = .0038 and P < .0001, respectively), constipation (P = .0006 and P = .0001, respectively), and painful defecation (P < .0001 for both). Multiple logistic regression analyses showed statistically significant differences between the patients and asymptomatic controls in childhood bladder infections (P = .006) and urinary urgency (P = .001) in adolescence.

These results support the need for longitudinal prospective assessment of children with dysfunctional elimination symptoms to determine whether these symptoms progress to IC/PBS. Additional research will contribute to our understanding of the natural history of IC/PBS, promote its earlier diagnosis, and potentially prevent disease progression.

Written by:
Peters KM, Killinger KA, Ibrahim IA. Are you the author?

Reference:
Urology. 2008 Nov 24. Epub ahead of print.
doi:10.1016/j.urology.2008.09.014

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.

The discovery also opens up new treatment possibilities for “painful bladder syndrome,” or interstitial cystitis, a condition that primarily affects women (only 10 percent of sufferers are men.) During a flare up, the pelvic pain is so intense some women inject anesthetic lidocaine directly into their bladders to get relief. Patients typically also feel an urgent need to urinate up to 50 times a day and are afraid to leave their homes in case they can’t find a bathroom.

“This disease has a devastating effect on people’s lives,” said David Klumpp, principal investigator and assistant professor of urology at the Feinberg School. “It affects people’s relationships with family and friends.” Klumpp said some women who suffer from this become so depressed, they attempt suicide.

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 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.

The findings suggest the 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.”

MEASURING PELVIC PAIN IN A MOUSE

When pain emanates from a visceral organ, the pain message is delivered to the spinal cord and bounces out to the corresponding skin surface, called the dermatome. To measure pelvic pain in the mice, Kumpp prodded their pelvic skin with nylon filaments of varying thickness and stiffness, beginning with one that was as thin as a human hair. The more pelvic pain the mouse was experiencing, the more sensitive its pelvic skin to even the finest filament.

Source: Marla Paul

Northwestern University

NIDDK Seeks Studies in Pelvic Pain and Other Syndromes

RFA Calls for Multidisciplinary Approach to Study of Chronic Pelvic Pain

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has issued a Request for Applications (RFA) for a multidisciplinary approach to the study of chronic pelvic pain (MAPP).

The MAPP Research Network will adopt multisite, multidisciplinary, highly collaborative, novel approaches using traditional urologic and nonurologic expertise to address key questions in understanding chronic pelvic pain syndromes. This effort is expected to lead to critical new insights into the underlying causes of interstitial cystitis (IC)—also called painful bladder syndrome (PBS)—and chronic nonbacterial prostatitis (CP), or chronic pelvic pain syndrome (CPPS), as well as possible links between these conditions and comorbid disorders, which have the potential for creating future prevention and treatment strategies.

In a separate complementary effort, the NIDDK is developing new and more comprehensive research definitions and criteria for IC/PBS and CP/CPPS that will adopt the concept of systemic disease. With these new definitions and criteria, researchers hope to identify more specific and relevant patient profiles for IC/PBS and CP/CPPS.

Frustrating Conditions

IC/PBS causes recurring discomfort or pain in the bladder and surrounding pelvic region. CP/CPPS causes pain in the lower back and genital area. Urinary urgency and frequency commonly occur in both IC/PBS and CP/CPPS patients. Both conditions frustrate patients and their health care providers because so little is understood about the source of the pain. Effective treatments are equally elusive.

The NIDDK has supported a series of initiatives aimed at understanding conditions that cause chronic pelvic pain, including the
• Interstitial Cystitis Database Study
• Interstitial Cystitis Clinical Research Network
• Boston Area Community Health Survey
• Rand IC Epidemiology Study
• Chronic Prostatitis Clinical Research Network
• Chronic Prostatitis Clinical Database

The NIDDK also has funded many basic research studies focusing on the biology of the bladder and prostate in an attempt to better understand the pathological basis of urologic chronic pelvic pain conditions. Despite these efforts, much remains to be learned regarding the etiology and natural history of these diseases.

The clinical and basic research studies developed by the NIDDK and the research community have traditionally focused on the bladder and prostate as the origins of disease for IC/PBS and CP/CPPS, respectively. However, recent epidemiological studies have shown other illnesses that share chronic pain as a major symptom are often associated with these urologic conditions, including fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome. These findings suggest the possibility of a common underlying pathophysiology in chronic pain disorders that has not been adequately addressed in IC/PBS and CP/CPPS studies.

MAPP Research Network Structure and Organization

The MAPP Research Network will include up to six Discovery Sites that share the common goal of improving the understanding of the fundamental basis of disease pathophysiology and natural history—including predisposition for IC/PBS or CP/CPPS—and assessing potential relationships between IC/PBS and CP/CPPS and other chronic pelvic pain syndromes.

“The NIDDK’s MAPP Network, through its unique approach, will address many long standing questions regarding urologic chronic pelvic pain conditions and will provide an improved knowledge foundation for developing effective treatment and intervention efforts,” said Chris Mullins, Ph.D., the program’s director and the NIDDK director of Urology Basic Cell Biology Programs.

While the specific scientific interests of each Discovery Site may differ, they all must demonstrate a dedication to the study of IC/PBS or CP/CPPS as a central focus. Individual Discovery Sites will conduct multiple projects focused on the scientific priorities of the MAPP Network.

Efforts will involve both site-specific studies and highly collaborative multisite, or trans-network, studies using the combined resources and varied expertise of the MAPP Network. The MAPP Network will include two separate Core Sites that will serve as common resources:
• The Data Coordination Core (DCC) will provide expertise in the overall administration and coordination of multisite research studies and in data analysis for individual Discovery Site projects and multisite trans-network studies.
• The Tissue Analysis and Technology Core will provide tissue (biopsy, serum, and urine) collection, banking, annotation/blinding, distribution services, and histological and tissue morphology analyses. The Core also will provide genomics and proteomics analyses and generate assay platforms—such as for genomics and proteomics studies and tissue expression analyses—for multisite efforts and individual Discovery Site efforts, as needed.

In addition to providing these functions, Data Coordinating Core and Tissue Analysis and Technology Core funds will support MAPP Research Network Ancillary Projects beginning in the first year. These projects, which will be designed to enhance multisite scientific collaborative projects at two or more sites, will be developed by the MAPP Research Network Steering Committee and will be reviewed for scientific merit and feasibility by an external Scientific Advisory Committee.

The NIDDK anticipates that among those selected to serve as Discovery Site or Core Site directors and as project leaders on individual Discovery Site projects will be investigators from diverse fields and those who have not been traditionally involved in studies of urologic chronic pelvic pain, but who have expertise in relevant disciplines.

For more information, email Chris Mullins at MullinsC@extra.niddk.nih.gov.

NIH Publication No. 08–5743
March 2008

Yesterday, the ICA announced by e-mail that founder & President Vicki Ratner MD has “stepped down” from her position as President of the organization. A new Executive Director, Barbara Gordon, will begin work in early March 2008.

We would like to take a moment to acknowledge Dr. Ratner who is, easily, the most recognized IC figure in the world today. She has been with the ICA for more than 25 years as its President and/or as a paid staff member. She had a tenacious drive to increase funding for IC research which, during her tenure, increased dramatically. From lobbying Congress to serving on various NIDDK committees, chairing IC conferences to working with various media outlets, she has been a pivotal figure in the IC movement. Her departure comes as a huge surprise.

In fifteen years, I rarely heard Dr. Ratner talk publicly about her IC. I find it impressive that she was able to travel so extensively and work so diligently given the challenges of having IC. She certainly deserves our accolades for being such a passionate IC advocate.

This transition comes at a challenging time. Not only is the IC international research community still debating a possible name change for IC, many researchers are now accepting the fact that IC is probably far more than a bladder disease. The latest MAPP study launched by the NIDDK is exploring how IC is related to its most common related conditions such as irritable syndrome and vulvodynia. It was also with great disappointment that we learned that the NIDDK funded clinical trial for a new IC treatment (Cellcept) was terminated just a few weeks ago due to a lack of positive results.

Pharmaceutical companies that have helped develop and fund IC outreach efforts are in transition, particularly with this difficult economy. Many see the profit potential of the IC community as limited and have moved on to other more profitable medical conditions. Others have products which, over time, have lost popularity as an IC treatment (i.e. DMSO). Luckily, some new over-the-counter supplements have created interest and excitement with a few new companies.

Similarly, the IC patient movement continues to change and diversify. No longer is the ICA the only patient organization in the USA or world. The IC Network continues our focus on needs of the IC patient, offering more than 300,000 support sessions per month in our support forum, live chats and phone support. Pure-Hope, formerly ICU Texas, is a new national non-profit focusing on both IC and pelvic pain whose strength lies in creating conferences and events. Local IC groups continue to function independently proving that they don’t need a national organization to manage them. A wide variety of international IC/PBS patient organizations now exist. Funding has become far more competitive with so many more hands reaching for a piece of the pie.

So, the question is, where will the ICA go in the coming years? Their success is clearly research and we hope that these efforts continue. We’re particularly excited about research “beyond the bladder.” If you’ve spent any time with an IC support group, it’s crystal clear that the relationship between IC and it’s related conditions must be explored in depth if we’re to uncover why and how these conditions occur simultaneously. Why do so many of us have anxiety disorder and IBS?? Why do women with IC often struggle with vulvodynia. How does IC vary between men, women, children and/or cultures?? What are the most promising new treatments under development?? For every new fact learned in a research study, it seems as if a dozen more questions emerge. The race is on and the ICA is an important part of our future.

We also hope that there will be more openness in the IC community in coming years:

• We hope that researchers with divergent and/or new viewpoints will have the opportunity to have their voices heard, particularly at the federal level.
• We hope that national and regional patient group leaders in the USA will gather together, atleast once a year, to discuss our common goals for the IC community. We have urgent issues that need attention, such as the dramatic rise of false cures on the web that are bilking patients out of thousands of dollars. The power of our collective diversity and individual organizational strengths has yet to be tapped. Collaboration, not competition, is vital to our overall success.
• We hope that more IC educational events will occur, particularly in areas that have been previously underserved, particularly the southeast.
• We hope that the youngest and newest members of the IC community will speak out on their needs, hopes and dreams and participate actively in our organizations. (Fifteen years ago, when we were new, we were laughed at for wanting to offer IC support on the web!). The door must always remain open to the next generation of our community. If that door is shut, the IC movement will lose our ability to respond, in a timely way, to the changing needs of the IC patient.

Yes, our wish list can go on endlessly but time is short today. I’d like to welcome Barbara Gordon to the IC community. She has taken on a large and complex job during what may be the most difficult period for the IC movement. We wish her success.

Jill Osborne, MA - ICN President & Founder

Age 47, Diagnosed at 32, First Symptoms at 13.

Urologic Diseases Cost Americans $11 Billion a Year

Bladder, prostate and other urinary tract diseases cost Americans nearly $11 billion a year, according to a new report from the National Institutes of Health. Medicare’s share exceeded $5.4 billion.

The five most expensive urologic problems — accounting for $9.1 billion — are, in descending order, urinary tract infections, kidney stones, prostate and bladder cancers and benign prostate enlargement, according to the authors of Urologic Diseases in America. The report was published online this spring and will be available in print and on CD in early May.

“This research sharply illustrates the immense burden of urologic diseases and the importance of studies to preempt disease processes and develop targeted treatments,” said Elias A. Zerhouni, M.D., NIH Director.

Five years in the making, Urologic Diseases in America stitches together a patchwork of reliable data, both new and previously published, revealing numbers of people affected, treatment patterns and economic cost.

TOP 10 DISEASES BY COST TOTAL
Infection (Women & Men) - $3.5 Billion

Kidney Stones - $2.1 Billion

Prostate Cancer - $1.3 Billion

Bladder Cancer - $1.1 Billion

BPH/Prostate Enlargement - $1.1 Billion

Urinary Incontinence - $463.1 Million

Kidney Cancer - $401.4 Million

Erectile Dysfunction - $327.6 Million

Prostatitis - $84.4 Million

Interstitial Cystitis/PBS - $65.9 Million

“The data have broad implications for quality of care and access to care and helps to inform discussions about health care and research needs,” said UDA coeditor Mark S. Litwin, M.D., M.P.H, a urologist at the David Geffen School of Medicine and School of Public Health at the University of California, Los Angeles.

Urologic Diseases in America describes more than a dozen diseases of children and adults, among them congenital abnormalities, erectile dysfunction, chronic prostatitis, interstitial cystitis, urinary incontinence and a chapter on sexually transmitted diseases, contributed by the Centers for Disease Control and Prevention. Findings include:

Medical care for nearly 12.8 million urinary tract infections in women alone costs nearly $2.5 billion annually. Adding the cost for men raises the total to $3.5 billion; Medicare’s share was $1.4 billion. Another $96.4 million was spent on 3.3 million prescriptions. More than half of all women will have an infection during their lifetimes. Reporting a trend toward using newer, and more expensive, fluoroquinolones raises concerns about increasing antibiotic resistance said UDA authors. And while only 20 percent of infections are in men, they are more often hospitalized and out of work about twice as long as women.

While hospitalizations, length of stay and the need for open surgery are declining for kidney stones, medical care still costs $2.1 billion annually, with another $4 million to $14 million spent on prescription drugs. Men are two to three times more likely than women to develop a stone, but more people of all ages and races are getting them: an estimated 5 percent of adults between 1988 and 1994, up from nearly 4 percent between 1976 and 1980. Compared to whites, African Americans and Mexican Americans have a 70 percent and 35 percent lower risk, respectively, of developing a stone.

Although data for childhood urologic diseases are scarce, urinary problems in children cost at least $75 million dollars a year. Vesicoureteral reflux, the abnormal flow of urine from the bladder up toward the kidneys, affects about 10 percent of all children and makes them prone to urinary tract infections and kidney damage. The cost of hospitalizations for reflux alone rose from $10 million in 1997 to $47 million in 2000; Southern states, defined using U.S. Census Bureau regions, saw the highest rise — 56 percent — attributable to a doubling in the number of cases.

“Our biggest challenge was finding reliable data in children,” said Christopher Saigal, M.D., M.P.H., Litwin’s coeditor at UCLA and RAND Health. “More research is needed in children.”

Urologic Diseases in America was funded by NIH’s National Institute of Diabetes and Digestive and Kidney Diseases and developed by a team of epidemiologists, health economists, statisticians, programmers and urologists.

Learn more about urologic diseases at http://kidney.niddk.nih.gov; click on statistics to find Urologic Diseases in America. UDA books and CDs may be ordered from the National Kidney and Urologic Diseases Information Clearinghouse at 1–800–891–5390, nkudic@info.niddk.nih.gov and at www.catalog.niddk.nih.gov.

The NIDDK, a component of the NIH, conducts and supports research in diabetes and other endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. For more information about NIDDK and its programs, see www.niddk.nih.gov.

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

The purpose of this study is to investigate the safety and effectiveness of a medication called CellCept in treating refractory (has not responded to other treatments) interstitial cystitis. CellCept is an immuno-suppressant. Immuno-suppressants work in the body by reducing the immune system’s ability to produce certain reactions that can cause inflammation. In some people, the inflammation produced by their immune system can damage healthy tissues and cause symptoms of pain and discomfort. CellCept is approved by the U.S. Food and Drug Administration (FDA) for use in patients who have had an organ transplant and helps to prevent the rejection of the transplanted organ. The study will be conducted at eleven research centers throughout the USA & Canada.

For more info and a list of trial centers, please visit:

http://www.clinicaltrials.gov/ct/show/NCT00451867?order=6