• Home
• SUPPORT FORUM
• Contact Us
• About Us
• Search
• Site Map
• ICN Shop

• What is IC/PBS?
• Treatments
• Self-Help
• Flares
• Get Support
• The IC Diet
• Stay Informed
• ICN Programs
• Join The ICN

April 2008 (View on the web)

Winter 2008 IC Optimist Now Available

The IC Optimist is the quarterly magazine provided to our ICN patient and professional subscribers. Our goal is to be encouraging and supportive, hence the title "The IC Optimist." We offer several types of subscriptions. For patients on budget, it's available for as little as $20 by email for our Silver Subscribers. Print versions are available to our Angel Subscribers for $60 a year, which also includes a 15% discount for most purchases for a year in the ICN Shop. Both International Angel and Medical Professional Subscriptions are also available.

Feature Story - The Long Road to Relief: Three Patients Find Relief with New Treatment Under Development

(Author: Judith Katz, Katz Creative. Reprinted with permission).

His marriage failed, his life was becoming more miserable with each passing day, and San Diego businessman Timothy Burks wanted to die. For almost a decade, Burks, now 62, found the unremitting pain and urgent feeling that he needed to urinate at least 20 times a day more than an inconvenience. For years Burks lived a lie, telling no one except the parade of doctors he consulted what he was going through. “How do you tell people your penis hurts, that it was a big factor in my divorce? This affliction was controlling my life so I made excuses at meetings, at dinners – I have to make a call, I have to blow my nose, I need a smoke.” (Burks doesn’t smoke).

“I can tell this story now,” he says. “I was in an airplane, stuck on the runway, and they told us we’d have to stay in our seats. I had gone to the men’s room before we got on the plane, but now I had to go again so badly that it was either they shut off the engines or I would urinate in my seat. So they shut the plane down. I can still feel the humiliation of walking down that aisle, but what could I do? The urologists I went to tried really hard, but they had nothing for me. Then, thank God, I found the top guy, Dr. Parsons, and the new treatment he helped create. Nobody should have to suffer the way I did!”   Today Burks reports, “I can drive for nine hours straight, as I did recently, and not have to stop once.” He is pain free – and although not “cured,” he definitely has his life back. He is also seeing someone and hopes to remarry. (Read More!)

 

Consumer Alerts - Heparin Recall Expanded Yet Again

FDA Issues Urgent Warning to Medical Device Manufacturers

The FDA continues to remain concerned about serious adverse events and deaths that have been reported after the use of contaminated heparin products that originated in China, resulting in several new recalls since our last newsletter. Over one hundred fatalities have now been reported to the FDA. Unfortunately, a small number of interstitial cystitis patients were given contaminated heparin in their bladder instillations, often resulting in severe, agonizing pain that lasted for several days.

On April 9th, 2008, the FDA's Center for Devices and Radiological Health (CDRH) issued an urgent warning to 82 medical device manufacturers asking them to test the heparin used in their products for contamination, including companies that manufacture kits that flush out intravenous lines, that make drug-coated stents for opening clogged arteries and certain diagnostic tests. Why? According to the LA Times, "the agency has received two reports of serious allergic reactions linked to medical devices that contained heparin. The reactions to the blood thinner are similar to those seen in some patients who received intravenous heparin that was recalled this year."

The recall and issues it raises about the quality of products obtained from China continues to be a source of great concern. A review of the FDA's inspection report (heavily redacted/censored) of the Changzou SPL Manufacturing plant, the possible source of the contaminant, found glaring deficiencies in their manufacturing, testing and sanitation methods. Specifically, there were "no critical processing steps identified for the ... repeated and efficient removal of impurities, such as proteins, nucleotides, virus, endotoxin, bacteria and heavy metals..." Read the full FDA report here!

More Countries & Companies Recall Heparin Products

March 28 2008: Covidien, formerly Tyco Healthcare, recently issued voluntary recall affects 32 lots distributed by Covidien in the United States. Read more!

March 26, 2008: French, Danish and Italian authorities have begun recalling batches of heparin or its active ingredient. Swiss authorities have asked G. Bichsel and B. Braun to remove two heparin products from the Swiss market. Read more!

March 21, 2008: B. Braun recalls 23 lots of heparin products manufactured by SPL. Read more

March 20, 2008: AmerisourceBergen's American Health Packaging (AHP) has voluntarily recalled 1,421 units (25 vials per unit) of 10000 USP units/ml heparin sodium injection 1ml vials. The vials were manufactured by Baxter and then placed by AHP into individually labeled bags for use in pharmacy automation equipment. Read More

March 2008: German distributor Rotexmedica GmbH Arzneimittelwerk in Trittau, Germany has recalled 3 lots of heparin products imported from China after 80 dialysis patients became ill.

 

Conference Reports

European Urology Forum (Davos, Switzerland)

J. Curtis Nickel MD (Queens University, Canada) is, in our opinion, one of the finest writers and clinicians in Urology today. For the IC movement, he has contributed clear, concise and logical IC treatment plans that have helped physicians around the world better care for their patients. Thus, when Dr. Nickel speaks or writes, we pay attention. Earlier this year, he gave a lecture at the European Urology Forum. Read more!

European Association of Urology - 2008 (Milan, Italy)

EAU is the largest urology conference that occurs in the world, second only to the AUA in attendance. This year, Drs. Curtis Nickel (Canada) and JJ Wyandaele (Belgium) gave a superb course on prostatitis and interstitial cystitis for participating physicians.

Dr. Nickel's discussion on prostatitis was encouraging with several new developments on the horizon. He shared that the annual cost of a patient with prostatitis exceeds that of a patient with Type 1 diabetes. The quality of life of a man with prostatitis is similar to a patient with a heart attack or acute crohns disease. In other words, it can be devastating in both symptoms and cost. In addition to the traditional therapies, he also uses phytotherapies, the herbal supplements saw palmetto, quercetin and cernilton.

Dr. Wyandaele gave a very thoughtful discussion of IC/PBS/BPS, beginning with a classic case study of a 47 year old woman with symptoms for four years. He guided participants through common symptoms and diagnosis methods, emphasizing that pain can be experienced in several locations including: the lower abdomen (80%) urethra (74%), lower back (65%), perineum (53%), vagina (51%), rectum (24%) and elsewhere (27%).

He emphasized that IC is not a psychosomatic disease. He also encouraged physicians to NEVER perform hydrodistentions without anesthesia, recommending that the procedure be done in a hospital where additional testing and examinations can also be performed (such as biopsy). As to the cause of IC, we were surprised to hear that he believed that only 70% of cases of a GAG layer (bladder lining) problem, the other 30% having a different issue causing their symptoms, such as an increase of mast cells.

This session is now available as a free webcast for medical professionals. Click here for more info!

 

The Latest IC Research

Incontinence Drugs (Detrol, Ditropan) May Hasten Memory Problems

April 18, 2008 - Are you also taking Detrol or Ditropan? Have you noticed that your memory isn't as good as it used to be?? Do you have moments when you seem more confused?? New research presented at the American Academy of Neurology meeting this week suggests that anticholinergics, medications commonly used to help reduce bladder spasms and/or incontinence (Detrol, Ditropan, etc.), may contribute to memory problems as we age. In an eight year study of 870 men and women (avg. age 75), people taking these drugs had a 50 percent faster rate of cognitive decline compared to those who didn't take any. The researchers considered other risk factors for memory loss, such as age, and still found the link. If you're taking these medications and noticing memory problems, please talk with your doctor about this. You may wish to adjust your medications. Read the full article!

Painful Intercourse Patients Respond Well To Rescue Instillations

Drs. Blayne Welk and Joel Teichman released the results of a small, preliminary study testing the effectiveness of a rescue instillation in reducing the symptoms of painful sex (dyspareunia). They administered the instillations 3 times weekly for 3 weeks. Of the twenty-three patients participating in the study, 57% reported resolution of dyspareunia after treatment. Though a smallish study, these results certainly suggest that more research should be initiated. This is a potentially promising new therapy for those struggling with painful intercourse. We wonder, though, if they studied men in addition to women?

Source: Blayne K. Welk , Joel M.H. Teichman, Dyspareunia Response In Patients With Interstitial Cystitis Treated With Intravesical Lidocaine, Bicarbonate And Heparin. Urology. 2008 Jan;71(1):67-70

URG101 (New Rescue Instill) Phase II Clinical Trial Shows Very Encouraging Results

April 12, 2008 - Urigen Pharmaceuticals, Inc. announced the early closure of the URG101-104 study due to positive, statistically significant interim analysis results in both the primary and all secondary endpoints. "Based upon further review, it has been determined continuing enrollment will not meaningfully alter the study conclusions. This decision allows us to now accelerate the full development of URG101," commented Urigen's Chief Scientific Officer, Dennis Giesing, PhD.

The URG101-104 study was a pharmacodynamic and safety study investigating the treatment of painful bladder syndrome/ interstitial cystitis (PBS/IC). The cross-over design utilized provided sufficient power to reliably assess treatment effects using modestly sized study cohorts. This study in combination with previous studies has treated a total of 200 subjects to date and further demonstrates URG101 is safe and well-tolerated. A final analysis of the study will be provided later in the quarter.

"These positive clinical trial results replicate and extend my earlier work on URG101. Furthermore, it is exciting to me that these are among the best results that have been obtained in a multi-center trial for PBS/IC. It is important to bear in mind that intravesical therapy is used throughout the country to treat PBS/IC and Urigen is working to standardize this therapy." commented C. Lowell Parsons, M.D., Urigen's Scientific Founder.

Sacral neuromodulation reprogramming: Is it a burden?

Researchers at William Beaumont Hospital (Royal Oak, MI) evaluated fifty patients who had received neuromodulation devices (i.e. Interstim) to determine if some patients had a higher than normal rate of reprogramming. Of the SNM performed, 91.5% were done for urinary urgency, frequency, or incontinence and 47.4% of those had interstitial cystitis. Overall, 239 programming visits were recorded, and subjects on average had two reprogramming visits per year. There was no correlation with number of reprogramming events and patient age, sex, reason for implantation, or diagnosis. These data suggest that the number of reprogramming episodes is small, and the majority is done as part of routine follow-up.

Source: Burks FN, et al. Sacral neuromodulation reprogramming: is it an office burden? Int'l Urogynecol J Pelvic Floor Dysfunction April 5 2008

Can pain help determine a diagnosis of IC

Because we don't, yet, have the perfect test, researchers continue to look for ways to help make a diagnosis of IC easier. The University of Maryland researchers, led by Jack Warren MD, have a proposal. In their EPIC study of patients with IC, they found that 97% of patients had a distinct triad of pain symptoms: (1) pain that worsened after eating certain foods and/or (2) pain that worsened as the bladder fills with urine and (3) pain that is relieved after the bladder is emptied. To test their theory, they also studied the national Interstitial Cystitis Database. Not surprisingly, that database also confirmed that 97% of patients had this unique triad of symptoms. Thus, they suggest, could these be used to help make a diagnosis of IC? We say "Of course." Spend anytime with an IC patient, and we almost always share how painful the bladder can become as it fills with urine and how much better we feel after we pee!

Source: Warren JW et al. Evidence-based criteria for pain of interstitial cystitis/painful bladder syndrome in women.. Urology. 2008 Mar;71(3):444

One year follow up to Botox

Researchers in Italy were curious about the short vs. long term effects of Botox when used to treat IC/PBS. In a study of 15 patients (3 men, 12 women), they found 86% of patients had a positive effect at months 1 and 3 after treatment. Unfortunately, that effect declined over time until, at month twelve, pain had recurred in all patients. They conclude "Intravesically injected botulinum toxin A is effective for short-term management of refractory painful bladder syndrome. The beneficial effects decreased progressively within a few months after treatment. Thus, repeat injections of the neurotoxin are required for efficacious treatment in patients with the disease."

Source: Giannontoni A et al. Botulinum A toxin intravesical injection in patients with painful bladder syndrome: 1-year follow up. - J Urol. 2008 Mar;179(3):1031-4

 

IC/PBS Clinical Trial News

New IC Study in Alabama - Pain and IC

Researchers at the University of Alabama at Birmingham are looking for women to participate in research studies concerning the mechanisms of pain in interstitial cystitis. If you are between the ages of 19 and 45 and if you have been diagnosed with Interstitial Cystitis for at least 6 months you might be an appropriate candidate for these research studies. Participants will be asked to record symptoms related to interstitial cystitis in a diary at home for 4 months. Women who are pregnant or had a hysterectomy are not eligible. For more information please contact our research office at: 205-934-7703 or via email womensresearch@ccc.uab.edu

(Support: NIH/NIDDK; Principal Investigator: Ursula Wesselmann MD, Dept. of Anesthesiology, University of Alabama at Birmingham)

 

New ICN Resources

We've spent the last few months doing a massive reorganization of our web site, including the addition of several new sections for the web site that we hope will help you better manage your IC, including:

ICN Senior Center:

• Introduction
• Interstitial Cystitis In Older Adults
• Patient Stories
• Getting A Diagnosis
• Finding The Right Treatment
• Maintaining Your Quality of Life
• Managing Treatment Costs
• Finding Support
  

ICN Pain Resource Center

• Introduction
• Potential Sources of Pain
• Working With Your MD
• Pain Care Principles
• Treatments Options - Medications
• Treatment Options - Procedures
• Treatment Options - Complementary & Alternative
  

ICN Disability Resource Center

• Four Types of Benefits
• SSA Application Process
• An Appeal Success Story
• More Disability Resources

 

We're Looking For Medical Care Provider Recommendations

In January, we launched our new searchable database of medical care providers who work with IC patients. It now offers listings for IC research centers, urologists, Ob-Gyns, physical therapists, pain centers, dietitians and counselors, many of whom have been suggested to us by their patients.

But we've also purged many old listings. Thus, we're looking for suggestions. Who better to tell us what medical care providers are the most compassionate in working with IC patients? You, the IC patient. We'd like your suggestions. Please visit our new database and see if you're doctor listed. If not, please use our recommendation form. We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care and share new IC resources with them.

Click here to search our database

Click here for our doctor recommendation form

 

Self-Help Tip of the Month - Pads: A Surprising Trigger For Pain and Discomfort

(by Jill Osborne, ICN President & Founder)

At first glance, this self-help tip of the month won’t seem that it applies to both men and women, but it does. Last week, I talked yet again with a woman who had extreme vulvar and perineal dryness to the point that her skin was cracking, her urethra was burning and her vulva was aching. Sitting was impossible. Each time she urinated, her urine felt hot, as if it were burning the skin it was touching… a very common complaint among ICers.

As we went over the possible root causes, particularly the very normal thinning of skin that occurs in women during menopause, nothing seemed to be triggering her discomfort. She used the right detergents that weren’t chemically irritating her (i.e. Ivory Snow & Dreft). She used the right bath soaps (Dove Bars). She was careful with her bath products and used no bubble baths, etc. She wore cotton underwear. She didn’t wear tight pants or pantyhose. Her hormones were normal. So, why, oh why, was her crotch so irritated? 

The answer may surprise you. It was the various sanitary, incontinence and/or mini pads that she wore each day because she thought it would help her if she leaked. I asked her “How long have you worn pads?” She said “About fifteen years.” I asked her if she had ever leaked into her panties before and she offered that she hadn't. “Why then do you wear pads?” I asked out of curiosity.  She said “I don't know. I just thought I was supposed to."

There are several downsides to wearing pads every day. First, they can be expensive. Second, they are notorious for drying out the perineum, vulva and/or any other mucus membranes they touch. Remember, mucus has a protective function. It’s normal for your tissues to be somewhat moist. When they dry out, they become much more brittle and irritated. Last but not least, for those of us who are more chemically sensitive, our tissues might be irritated by the chlorine and plastics used in many mass market pads, particularly the super thin pads that rely on a chemical coating to absorb liquid.

What are your options? If you’re not leaking, try not to use pads at all. Whenever you use the restroom, make sure you rinse yourself off with a periwash bottle to help cleanse you and restore just a bit of moisture. Pat dry with a towel.

If you’re feeling as if you might leak yet are extra tender “down there”, soft, cotton flannel pads are an easy option provided that you can tolerate wearing them during the day (I use mine primarily at night). Glad rags makes an excellent organic cotton flannel pad that is more soothing than a paper pad. These can be ideal for men and women who have extreme urethral sensitivity, particularly at the tip of the urethra.

If you’d prefer a traditional product, we suggest that you use brands that are not chlorine bleached, and are perfume and plastic free. Both Natracare and Seventh Generation make excellent pantiliners and a wide variety of pads for your menstrual cycle and those days when you need a little extra confidence.

Guys… I know you think this column isn’t for you, but it is. You know that one of the sorest points for men with IC is the tip of the penis. If you’re struggling with discomfort in your urethra, consider your soap and bathing products first. Are you using a major brand name like Cheer? We suggest that you try the more soothing products listed above. Secondly, look at your boxers or jockeys? They should be soft cotton. A jersey knit is probably better than broadcloth but that’s your choice. Lastly, if you’re struggling with leakage, you do have several options from pads to various medical devices. Talk with your doc about it. Remember, even F-16 pilots need some creative help every now and then too.

Yours, yet again, and always willing to talk about the more embarrassing side of life with IC – Jill O.

IC Diet Quick Tip - Need some passion in your life?

Are you desperate for something light, fruity and refreshing now that Spring is nearly here? Bev Laumann has an excellent suggestion, the IC Friendly "Purple Passion Smoothie." Made with IC blueberries and easily customizable, it proves that you can enjoy a fruit drink!

Purple Passion Smoothie

Ingredients:

* 1/2 cup blueberries

* 1 & 1/2 cups vanilla ice cream

* 1/2 cup cold milk

* 2 chilled glasses

Place all ingredients in a blender and process until smooth and frothy, about 45 seconds. Pour into chilled glasses and serve. Makes about 2-1/4 cups. Frozen blueberries work fine too.

Per serving: 219 Calories, 11g Total Fat; 7g Protein

Variations: I've tried substituting cottage cheese curds for about 1/4 cup of the ice cream (just curds, not whey, rinsed under running water). On occasion I've also made this more of a "meal" by adding 2 Tbsp. of pure high-protein egg white powder.

 

New IC Support Groups & Support Opportunities

Can you imagine how great it would feel to walk into a room filled with others who understand exactly what you're going through?? Having IC is difficult at times... and doing it alone is unnecessary. Why recreate the wheel and try to figure this out on your own when there are dozens of independent IC groups around the country who are waiting to help you! IC Support Groups will help you learn more about IC, about resources in your area and, most of all, can help you make some great new friends! Don't suffer in silence at home, alone. If there is a group near you, call the group leader and introduce yourself! Click here to find a support group near you!

ICN Live Support Chat Schedule

The ICN is proud of our role in launching the first bladder support groups EVER on the web back in 1994. ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders, Leslie Grinnell & Kathi Heintz. Join us for a typical support group meeting live from the comfort of your home. What could be easier?? Please note! Chats are free for all. No log in name and password are required. Just type in a user name and go!

When: 1st & 3rd Monday of the Month, 5PM PST to 7PM PST

Where: ICN Chat Room

 

What's New In The ICN Mail Order Center

http://www.icnsales.com - (707)433-0413

Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!

Azo Standard Bladder Relief Tablets

Azo Standard is an OTC bladder analgesic with the same active ingredient as Pyridium. Yes, this is the stuff that turns your urine orange. A bladder analgesic, it may relieve symptoms such as pain, burning, urgency and frequency of urination associated with irritation of the lower urinary tract caused by infection, trauma, bladder procedures and catheters.

Contains Phenazopyridine Hydrochloride, the #1 ingredient prescribed by doctors and recommended by pharmacists for urinary discomfort.  Read more or Buy Now!

Culterelle Probiotics

CULTURELLE® is an all-natural dietary supplement containing the probiotic, Lactobacillus rhamnosus GG (LGG®). Developed in 1985 and patented in the US in 1987 by Dr. Sherwood Gorbach and Dr. Barry Goldin, of Tufts University, LGG, the subject of 250 clinical reports and studies, is the most widely researched strain of probiotic in the world.

Unlike some probiotics, commonly found in fortified foods, LGG is one of the only probiotics that survives the stomach and bile acids of the digestive tract, thus bringing health benefits to where it is needed most. At the time of manufacture, each CULTURELLE® capsule contains a minimum of 30 billion live cells of beneficial bacteria. It provides at least 10 billion live cells at the time of use, the amount recommended by clinical science. Read more or buy now!

Warm Whiskers Cat Wrap Heating Pad

Calling all cat lovers in need of some extra warmth. This microwaveable heating pad by Warm Whiskers is soft, warm and cuddly, a perfect source of comfort during an IC flare or menstrual cramps. Heat in the microwave for 90 seconds and soothing moist heat will work on sore muscles for about an hour. Drape over shoulders, warm the bed, or wrap around any part of the body that needs attention. 30' long. Read more or buy now!

Azo Test Urine Test Strips

Are you confused about whether you're having an IC flare or a UTI? 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!  Read more or buy now!

Alkalive pH Urine Test Strips

Manufactured by pH Ion, this new, more accurate, test kit checks the pH of urine. This will allow you to test the acid or alkaline level of your urine. We know, for example, that urine that is highly acidic will irritate the bladder. We also know that urine that is very alkaline (i.e. bleach like), is also very damaging and irritating. This test works by measuring the concentration of hydrogen ions in urine. A score lower than 7 indicates that the urine is more acid. Higher than 7 indicates that urine is more alkaline. In a pH balanced body, urine is slightly acid in the morning with a pH range of 6.5 to 7. By evening, it generally becomes more alkaline, pH 7.5-8 as your body digests food and releases electrolytes.

Includes a whopping 80 test strips! Read more or buy now!

Go Green With Glad Rags Organic Flannel Pads (Day & Night)

Women with IC often struggle with irritation at the urethra and on the vulva making the use various menstrual pads painful. This is particularly true for patients with vulvodynia. A great option are the organic, cotton flannel pads known as "glad rags." They are soft, washable and more soothing to tender, irritated tissues. The smaller day pads are designed to snap around smaller underwear, they are great for petite frames or days when you want a little protection. The night pads are longer, wider and more absorbant. Lasting 5+ years, GladRags are easy on the pocket book, while also using minimal resources. Read more!

• Awards and Honors
• Disclaimer
• Privacy Policies
• Editorial Guidelines
• Sponsorship Guidelines
• Site Map

© 1996-2008 Interstitial Cystitis Network

Interstitial Cystitis Network, PO Box 2159 Healdsburg, CA 95448

A Division of J.H. Osborne, Inc., 4983 Sonoma Highway, Suite L, Santa Rosa CA  95409

Orders: 707-433-0413 Patient Assistance : 707-538-9442

Our Santa Rosa location welcomes visits from IC patients and family members!