IC Disease

It is estimated that approximately 10% of all Interstitial Cystitis patients do not respond to conservative medical treatments.  For these patients, supratrigonal cystectomy and bladder enlargement enterocystoplasty has been used.  To evaulate the results of using this form of treatment, researchers evaluated the results from the patients that had this surgical procedure to treat their IC Disease.

Included in this study, 15 patients underwent the supratrigonal cystectomy and bladder enlargement enterocystoplasty between 1999 and 2006. All patients’ symptoms were reported along with other medical treatments they had tried. All of the patients’ bladder capacities were also measured.

Out of the 15 patients surveyed, 13 had found their urinary frequency due to IC Disease had improved and 11 said they had improvement in pain. 

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Of all places to find research and study information on chronic illnesses, I never expected to find anything on Craigslist!  The website, PROCLAIM, is seeking IC Disease, Fibromyalgia, chronic pain and Chronic Fatigue Syndrome patients to take part in a year long survey that will take place via the Internet.   This survey will study the effectiveness of alternative medicine and the interactions among stress and coping, pain, and treatment outcomes.

The PROCLAIM survey, which stands for Patient-Reported Outcomes from Complementary, Alternative, and Integrative Medicine, was developed under a grant to UCLA researchers from the National Center for Complementary and Alternative Medicine.

If you would like to enroll in this year-long study, follow these directions:

• Go to the PROCLAIM website at http://www.proclaim.org
• Register as a new user
• Select the clinic name (Craiglist)
• Read and sign the consent form
• After you sign the form with your email address, you can begin to answer the first in a series of questionnaires. The system will send you email reminders at the time of each scheduled follow-up for one year.

For further information about PROCAIM, please contact:

Deborah Ackerman, Ph.D.
Department of Epidemiology
UCLA School of Public Health
Email: Deborah.Ackerman@ucla.edu

Long term study results were published in a December 2008 press release by Alaven Pharmaceuticals that found CystoProtek may very well be an effective medication/supplement treatment for Interstitial Cystitis.  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 glycosaminoglycan layer in the bladder. It is a non-prescription supplement.

The study included a total of 252 IC Disease patients who received twice daily treatments of two oral CystoProtek capsules (4 capsules/day). Study participants were refractory to oral and intravesical treatments and they completed the 6 - 18 month study. Patient’s symptoms were assessed using a visual analog scale (VAS), which scores symptoms on a scale of 0 (no symptoms) to 10 (worst symptoms). The average duration of treatment was almost 12 months.

Overall improvment was more than 50% and both male and female patients showed similar improvement. The women IC study patients who had more severe symptoms showed an even greater improvement. Approximately 17.5% of the study participants became symptom free during the study.

UroToday.com reported with an article titled Nonbladder Syndromes Often Precede Onset of PBS some interesting discoveries surrounding Interstitial Cystitis, also referred to sometimes as Painful Bladder Syndrome. 

Dr. John Warren and his colleagues studied more than 300 cases of IC Disease/Painful Bladder Syndrome to see if they could determine if specific syndromes occur before a diagnosis of Interstitial Cystitis.  Here is what Warren and colleagues study revealed:

• The 313 cases studied were matched to 313 controls by sex, age, region, and index date-interview info.
• Diabetes (treated with oral medicine) was the only syndrome diagnosed in significantly fewer cases than in controls.
• “No significant differences were found between cases and controls in 12 diseases diagnosed by physicians: hypothyroidism, mitral valve prolapse, shingles, cancer, inflammatory bowel disease, insulin-treated diabetes, hyperthyroidism, Lyme disease, multiple chemical hypersensitivity, or systemic lupus erythematosis. Antecedent syndromes significantly more prevalent in the cases by physician diagnosis were: fibromyalgia, irritable bowel syndrome, migraine, panic disorder, endometriosis, asthma, and depression. Allergy was more common by self-report. Vulvadynia and sicca syndrome symptoms were more common in the BPS population as well.”
•  Vulvodynia was only found in 2% - 8% of subjects.  These statistics led Warren to believe that Vulvodynia is an infrequent antecedent predictor of IC Disease; however, it is considered a common referred pain from the illness.
• ME/CFS, Fibromyalgia and IBS were associated with each other by “pairwise and factor analyses using numerous assumptions”.

 Warren concludes that IC Disease/PBS manifests from a systemic syndrome. 

Japanese urologists and researchers have discovered a new diagnostic breakthrough for Interstitial Cystitis patients!  It can be difficult for urologists to make a diagnosis of Interstitial Cystitis and diagnosing the bladder lesions that are a hallmark feature of the illness can also be difficult to do sometimes. 

The Department of Urology, Kyoto City Hospital, Kyoto, Japan, goal was to develop an IC Disease diagnosis method using a cystoscope with a narrow-band imaging (NBI) system that can detect mucosal angiogenic lesions.

The Japanese researchers and doctors have discovered that by using a flexible cystoscope with the NBI system allows them to easily detect the ulcers and lesions that are typically associated with IC Disease.  Here is more information on this new research.

Fifty-two subjects suspected of having IC between October 2006 and June 2007 were included in this study. There were 49 women and three men, ranging in age from 19 through 85 with an average age of 59. First, conventional cystoscopy under spinal anesthesia was performed to examine the ulcerative lesions by a urological specialist. Then, other health care professionals made a separate observation of capillary-rich areas of the superficial layer of the bladder mucosa by cystoscopy with the NBI system.

Among the 52 patients, 37 cases were found to have ulcers by conventional cystoscopy, which were also recognized as capillary-rich brownish areas using the NBI system (100% accuracy); 13 cases were found to have NBI-positive areas without ulcer, which were coincided with those with petechial hemorrhages and glomerulations following subsequent hydrodistention; and two cases of normal mucosa were detected. Furthermore, six cases of bladder cancer (carcinoma in situ) were detected by biopsies that were obtained from the ulcerative lesions positively identified by NBI cystoscopy.

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A recent study was conducted to determine if the prevalence of recurrent UTIs (urinary tract infections) and difficulties with voiding was common in childhood and adolescent years in adult women who have interstitial cystitis and painful bladder syndrome. 

The results of the study?  It didn’t surprise me to read that the relationship with voiding issues and bowel problems was found to be “not clear” in a woman’s childhood years and later development of IC Disease. To read more about this study and to read figures and statistics, click the source link below.

As a child, I frequently suffered from urinary tract infections, bladder infections and frequent urination all through high school and into my twenties.  At the time I didn’t realize that I possibly suffered from an illness like IC Disease but looking back now I can see that these were all the beginning stages and the warning signs.  I just didn’t know it and neither did the doctors back then.

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It looks as though there may be another use for Botox besides freezing people’s faces!  There is currently a clinical trial (click HERE to read more) that is studying the effectiveness of using Botox treatments to treat Interstitial Cystitis.  Botulinum toxin A causes muscles to relax by “inhibiting the acetylcholine release at the neuromuscular junction”.  Botox has been found to relieve pain in many of the different muscle spasm related conditions. 

In this clinical trial, researchers want to determine whether 100 units of botulinum toxin A will relieve bladder and pelvic pain in IC Disease patients.

For the inclusion criteria for this trial, visit the Clinical Trials website. 

I read an article today that stated that Interstitial Cystitis patients may benefit from immunosuppressive therapy with cyclosporine, according to several studies.  According to the research that has been done, cyclosoporine is supposed to help those patients who have “severe, refractory interstitial cystitis”.

So what is Cyclosporine?

Cyclosporine can be either taken orally or injected intravenously. As I mentioned above, it is an immunosuppresant drug that is used to reduce the body’s natural immunity in patients who receive organ transplants such as kidney, heart and lung transplants.  Cyclosporine has also been used to treat other conditions such as rheumatoid arthritis and psoriasis. 

This is a very strong medication and does have a risk of side effects such as kidney problems, liver problems and high blood pressure. 

If this is another treatment that will be approved for IC Disease, it will be another milestone reached in the war against this terrible illness.

The University of Iowa will be recruiting patients for several IC Disease studies to determine if Interstitial Cystitis is a whole body condition.  Researchers will be trying to determine whether or not there are subtypes of Interstitial Cystitis and they will also be looking at systems of inflammatory regulation.

One of the main researchers on the study, Dr. Kreder, says that what they are referring to in this study by “subtypes” is by researching IC patients who also have other chronic conditions - Fibromyalgia, Chronic Fatigue Syndrome, and Irritable Bowel Syndrome.

The studies will also include researching:

• Pain mapping IC Disease
• Examining the hypothalamic pituitary-adrenal axis, which helps regulate temperature, the immune system, mood, sexuality, and energy, as well as reactions to stress and injury
• Examining brain pathways that may govern painful syndromes
• Examining how certain bladder factors may predispose someone to IC Disease

What exciting news for those of us who suffer from other chronic conditions like chronic fatigue syndrome and fibromyalgia!  The National Institute of Health (NIH) has awarded $37.5 million to eight research centers who will conduct a 5-year study of chronic urologic pelvic pain syndromes and how they relate to chronic fatigue syndrome and fibromyalgia.  I have believed for years that my IC Disease is related to my chronic fatigue syndrome and fibromyalgia.

The eight research centers that will be involved in this major study include:

• Northwestern University, Chicago
• University of California, Los Angeles
•  University of Iowa, Iowa City
• University of Michigan, Ann Arbor
• University of Washington, Seattle
• Washington University, St Louis
• University of Colorado, Denver (tissue/sample bank & genomic/proteomic analysis)
• University of Pennsylvania, Philadelphia (coordination & data analysis)

From the NIH Press Release:

“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 interstitial cystitis/painful bladder syndrome and chronic prostatitis/chronic pelvic pain syndrome 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 organ-specific cause has been identified for either disorder.”