Interstitial Cystitis Network Newsletter

February 2013 - ICN E-Newsletter

Sponsored by: Prelief - CystaQ - BladderQ - Desert Harvest Aloe - Squatty Potty

Coming this Spring!  MultiRight - The first low acid multivitamin developed by Farr Labs & the ICN!

The Latest News & Research

Taris terminates LiRIS clinical trial

The clinical trial for LiRIS and interstitial cystitis (Placebo Controlled Study of Safety,Tolerability, and Efficacy of LiRIS in Women With Interstitial Cystitis) has been terminated with no explanation offered. A company representative of TARIS Biomedical Inc. offered that a new study will be launched in the near future. Details to follow!

FDA approves Botox as a treatment for OAB

On January 18, the U.S. FDA expanded the approved use of Botox (onabotulinumtoxinA) to treat adults with overactive bladder who cannot use or do not adequately respond to a class of medications known as anticholinergics.  When Botox is injected into the bladder muscle, it causes the bladder to relax, increasing the bladder’s storage capacity and reducing episodes of urinary incontinence. Source: US FDA  Press Release

FDA approves new over the counter "Patch" for women with OAB

The U.S. FDA has approved Oxytrol for Women, the first over-the-counter treatment for overactive bladder in women ages 18 years and older. Oxytrol will remain available for men with overactive bladder by prescription only. Oxytrol for Women is a patch that contains oxybutynin, a medicine that helps relax the bladder muscle. It is the first drug in this class to be made available over-the-counter for treatment of overactive bladder. It is applied to the skin every four days.  Source: US FDA Press Release

Less invasive PTNS procedure found effective and less expensive!

Urologist Scott MacDiarmid (Alliance Urology Specialists, Greensboro NC) compared the cost of sacral nerve stimulation (i.e InterStim) with the cost of percutaneous tibial nerve stimulation (i.e. Urgent PC) and found PTNS to be equally effective yet far more affordable.  Dr. MacDiarmid wrote "We believe that the differential in costs between SNS and PTNS should be carefully weighed when offering neuromodulation therapy to patients. PTNS is minimally invasive, has a negligible adverse event profile, can be used in conjunction with other OAB therapies, and does not interfere with diagnostic tests like MRI - as well as being less costly." At one year of therapy, sacral nerve stimulation patients paid seven times more than a PTNS patient.. and at two years, the cost was still five times higher. Read the study abstract here!

Chronic pelvic pain patients may experience pre-term delivery

Researchers in Turkey found a correlation between chronic pelvic pain and pre-term delivery in a small study of 57 pregnant women and found a higher incidence of interstitial cystitis in those patients who experienced early delivery.   Read the study abstract here!

UTI's increase and bladder healing declines with menopause

We've long known that SOME post menopausal women seem more vulnerable to recurring UTI's with previous research suggesting that the decline in estrogen was making vaginal and vulvar skin more susceptible to infection. It is fairly standard to provide these women not only with antibiotics but also an estrogen cream to strengthen their skin. This study reveals that the lack of estrogen appears to make bladder healing and repair more difficult. If you can relate to this in any way, the next time you visit your OBGYN or urologist, have them look at your vulva or vagina to determine if any estrogen thinning or atrophy is occurring. If so, you might benefit from using an estrogen cream to not only strengthen your skin from bacterial attack but also, perhaps, to aid in bladder healing. Read the study abstract here!

More Studies

 

IC & Pelvic Pain Clinical Trials

Clinical trials are a vital part of the search for a cure for IC. Not only do they allow patients to participate in cutting edge research, but they also can help patients receive treatment who may not have access due to a lack of health insurance. There are 30 studies currently underway as listed at clinicaltrials.gov!

FOR WOMEN - Microbiomes and Interstitial Cystitis

(Northwestern University - Chicago, IL) IC remains an enigma within urology, with no known etiology or widely effective therapies. However, some IC patients suffer bowel co-morbidities, and it is well established that the GI tract can influence bladder function and sensation via pelvic organ crosstalk.

Like other body sites, the gut harbors a rich microflora. Studies characterizing microbial diversity and relative abundance at a particular body site, the "microbiome," reveal that microbiomes play critical roles in normal cellular and organ function, and thus this importance is emphasized with the Human Microbiome Project (HMP), an NIH Common Fund initiative. Microbiomes are also dynamic and subject to skewing, and these changes are increasingly associated with diseases including Crohn's disease, ulcerative colitis, and obesity. Antibiotic therapies alter microbiomes, often causing temporary dysfunction and sometimes resulting in diseases such as colitis.

Since IC patients often have a history of urinary tract infection (UTI), they typically receive multiple courses of antibiotics. This therapeutic history of IC patients may have adverse consequences for two reasons. First, potential skewing of the gut microbiome may alter normal sensory and functional homeostatic mechanisms, contributing to pain and voiding dysfunction. Second, an altered gut microbiome may foster uropathogen reservoir expansion, and our preliminary data demonstrate urinary E. coli isolates can induce chronic pelvic pain persisting long after microbial clearance.

Together these lines of reasoning raise the provocative possibility that microbiomes contribute to IC directly by supplying uropathogens or indirectly through organ crosstalk dysfunction. Therefore, is an altered gastrointestinal and/or reproductive tract microbiome associated with IC?  Researchers at Northwestern are seeking women who are interested in participating in this novel study.  You must be between the ages of 18 and 45, pre-menopausal and have had pelvic discomfort or pain for three of the last six months.

For additional information, please contact:  Darlene S Marko, RN 312.695.3898 d-marko@northwestern.edu

Trial ID # NCT01738464)

More Studies

 

New Resource - The Squatty Potty can help with constipation and pelvic floor tension!

The Squatty Potty helps ease suffering from constipation and pelvic floor disorders in women and men by improving toilet posture. A 2008 study by Kaiser Permanente published in Obstetrics & Gynecology found that one-third of women suffer from one or more pelvic floor disorders. In addition, aging, obesity, and childbirth increase the likelihood of experiencing these issues. Although pelvic floor disorders are more common in women, men also suffer from similar symptoms; the National Health and Nutrition Examination Survey reports that nearly one in every five men ages 60 and older experience incontinence.

Manufactured in the USA, the Squatty Potty’s ergonomic design properly aligns the colon to reduce straining during bowel movements; pressure from frequent straining can contribute to pelvic floor disorders. Recently featured on The Dr. Oz Show and The Doctors, the Squatty Potty is a toilet footstool that helps assume the squatting position for more effective elimination.

We think this is a must for any IC patients also struggling with constipation, hemorrhoids or pelvic floor dysfunction. Watch a video and learn more here!

 

Upcoming Patient Conferences:

Allian ce for Pelvic Pain

A Weekend Retreat for Female Chronic Pelvic Pain - April 27-28, 2013

Join some of the top chronic pelvic pain specialists in the country for a special 2-day educational retreat dedicated to female chronic pelvic pain. This weekend will provide a solid foundation of knowledge, skills, and treatment modalities that will help you get back on track towards managing and healing your chronic pelvic pain. The conference is for female chronic pelvic pain patients with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Vulvodynia, Vestibulitis, Lichen Sclerosis, Pudendal Neuralgia, Endometriosis, and other pelvic and genital pain disorders. Supportive partners and significant others are invited and encouraged to join us on this weekend of learning and transformation! There will be special workshops just for you!

Learn more!

 

Consumer Alerts

Surprised to see that sacral neuromodulation is now offered to children

(By Jill Osborne, MA ) I found myself rather appalled by a press release promoting neuromodulation for children struggling with urinary or fecal incontinence. I'm not opposed to neuromodulation. As demonstrated in several research studies, it can be life changing for patients who struggle with incontinence who have failed to respond to other therapies. But I do think that it must be considered very carefully with respect to the potential risks (and costs) by the parents of children for which this treatment has been proposed.

A   search of the US FDA MedWatch Maude Database for Interstim reveals hundreds of SERIOUS adverse events relating to sacral neuromodulation including serious MRSA infections, device migration, device malfunction, difficulty walking, conflict with preexisting pacemakers and even fatalities. Some patients, including several in the ICN forum, believe that they were permanently damaged by the device and, sadly, our cries for an independent investigation of these adverse events were ignored despite rising reports of fatalities. See: Osborne, J. "Why Did a Patient Die Hours After InterStim® Surgery?" IC Optimist, 8(3):5-9. https://www.icnsales.com/ic-optimist-fall-2011.html

As a parent, I would want to know the potential risks and long term consequences of having a device such as this implanted in my childs body. Questions must be asked of the medical team such as:

  • What research has performed which studies the use of this device in children?
  • What adverse events have been documented?
  • Were they successfully resolved?
  • What experience does the surgeon have in performing this surgery?
  • Can the device be successfully removed if it is found to be ineffective?
  • Given that my child is growing, will the device move with growth?
  • Will growth make removal difficult in one, two, three years or longer?
  • How many potential surgeries will my children require over a five year period and what is the potential cost of these procedures?

Parents must determine if the urologist will continue to provide care for their child even if they lose their health coverage. Some patients have reported that without insurance the original surgeon and/or urologist stops providing care leaving patients to fend for themselves, in some cases with malfunctioning and painful devices.

Thankfully, the press release clearly states that sacral neuromodulation is NOT a first line intervention and is only considered if a child has not seen results with medication and/or behavioral therapy. Dr. Seth Alpert says "“We see and treat many children with urinary incontinence, but most will respond to medication and/or behavioral modification.” This certainly applies to adults considering the procedure as well. - Jill O.

Read the press release

 

Recent & Topical IC Blogs & Videos

 

Self-Help Tip of the Month - Don't Wait Too Long To Apply For Disability Benefits Or You Could Lose Them

 

(By Jill Osborne, ICN President) I just got off the phone with “Rita,” an IC patient who has gotten herself into a terrible situation. In 2008, she had to stop working due to her IC and other serious medical conditions. As a resident of California, a State Disability Insurance (SDI) fee was deducted from paychecks yet she chose not to apply for SDI at that time. When I asked her why, she said “I just thought I’d take six months, research it and then find a cure.”

Well, six months slowly changed into years as she lived off of her retirement and savings accounts. She’s now broke, unable to pay many of her bills and has finally realized that disability benefits could have helped. The problem? She waited too long.

Both state and federal disability programs work like most typical insurance programs. You must have recently paid into both systems to be eligible for benefits. If you stop paying into the system, you will eventually lose your eligibility.

In California, you must apply for SDI within 49 days of becoming disabled or you could lose your benefits. This makes sense given that the purpose of the state program is to provide “short term” benefits for workers who become ill or injured. State disability is fairly easy to obtain provided that you have a doctor who will vouch for your medical condition. They max out at one year.

Federal Social Security Disability Insurance (SSDI) benefits are designed for workers with severe or fatal illness who are not expected to be able to return to work. They are, in general, much harder to obtain than state benefits and have a more rigorous work history requirement. To be eligible you must have worked and paid into the social security system for approximately ten years (i.e. earned 40 quarters). You must also pass “the recent work test.” This means that you must have RECENTLY paid into the system. If you are 31 or older, you must have worked at least 5 of the last 10 years to keep up your SSD coverage. There are lower standards if you are in your twenties.

The Supplemental Security Income (SSI) program, also administered by the Social Security Administration, may provide help for patients with a minimal employment history. It is based upon your financial needs and income. Unlike the two programs above, SSI is funded through general tax revenues rather than payroll deductions.

In Rita’s case, she is no longer eligible for state benefits and would have failed the recent work test had she waited another few months to apply. Thank goodness she didn't. She now has a chance to receive benefits and we can only hope that she is approved. She has multiple disabilities and should have applied years ago.

The reason why I’m writing this today is that I think she, like so many other patients, perceived that receiving disability benefits would have been a failure or perhaps shameful. This couldn’t be farther from the truth. If you have been gainfully employed and paid into these systems, you are absolutely entitled to benefit from these programs should you become injured or ill.

Please don’t jeopardize your financial future by trying to live off of your savings rather than applying for benefits. Don’t let pride stand in your way. There is no shame in using disability benefits to help you if IC has prevented you from earning a living. If you have paid into the system, you are entitled to apply for assistance. Go for it!

Learn more about disability insurance in the ICN Disability Resource Center: http://www.ic-network.com/disability/

 

ICN Hot Topics - Do Antibiotics Bother Your IC?

Can antibiotics for a sinus infection trigger an IC flare? Yes! Some antibiotics can certainly irritate our overly sensitive bladders while others seem more bladder friendly.

What antibiotics have you found to be irritating??

What antibiotics have you found to be more bladder friendly?

Check out the discussion and share your thoughts on our Facebook page!

 

Low Income Resources - Do you know about 211?

ICN volunteer Kadi asked us to share this fabulous service. 2-1-1 is an information and referral center that connects people quickly and effectively to community, health and disaster services through a free, 24/7 confidential phone line and searchable online database .If you're struggling financially, need help with food, housing, medical care ,senior services, child care or legal aid this is a fabulous resource run by United Ways across the USA. Simply call 211 or visit http://www.211.org for more information!


Recipe of the Month - Salmon Baked in Herb Sauce

 

Did you know that IC patients have shared hundreds of recipes in the ICN IC Chef Cookbook and our support forum! Here's a recipe submitted by IC author Bev Laumann! Find recipes and share your own here!

 

(serves 4)

4 salmon steaks

4 Tbsp. butter or stick margarine, softened

1/4 tsp. salt (or to taste)

1 Tbsp. flour

2 tsp. chopped fresh tarragon

8 fresh sage leaves, chopped

4 tsp. chopped fresh parsley

2 large pieces of aluminum foil

Place two of the salmon steaks on each of the pieces of foil. In a small dish, thoroughly mix together the softened butter, salt, flour, and the chopped fresh herbs. Spread the herb butter on top of the salmon steaks. Fold up the foil and make a packet of each. Place on the center rack of a 350 degree F. oven and bake for 35 minutes, or until done. Carefully unwrap and let cool a minute before serving.

 

We're Looking For MD & PT Recommendations in Canada & USA

 

You've asked. You've pleaded. You've often been desperate to find a urologist who can treat your IC. We're now collecting names to create a new database of care providers in Canada and the USA! If you have a doctor that has treated you compassionately, please share their names with us! Please visit our clinical database and see if your doctor is 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, share new IC resources with them and ask if they would like to be listed on our site.

Click here to search our database

Click here for our doctor recommendation form!

 

IC Resources From The ICN Mail Order Center

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!

 

 

If there's one holiday designed to aggravate an IC patient, it's Valentine's Day. Chocolate is a well known IC trigger. Sex, of course, can be a struggle during our more painful IC flares! What's to look forward to when you have IC?? A lot! But, if Valentine's Day is a struggle, please read "Valentines Day, Intimacy and IC." 

We've assembled a few items that we hope will help! In "Treats for my Sweet", you'll find some of our favorite IC friendly candy and cookies, perfect for an IC friendly treat. Oh and check out the healthy snacks too. The coconut chips are to die for! In "Romance and Sensuality," you'll find a selection of items that you might find both fun and pleasurable for men and women! We'll shortly be an affiliate for the leading men's sex toy, the TENGA which is a perfect alternative for those moments when intercourse isn't possible! If you're struggling with sex, we also have some books that are very helpful!

As I wrote in the blog mentioned above, the true gift of Valentine's Day is that we get to tell those people that we love just how much they mean to us. Don't let expectations get in the way. We've all had both good and bad days! This year, use it to tell the people you love just how much you care about them! - Cheers to you! - Jill Osborne, ICN Founder

 

Find these items and 400 more items in the ICN Mail Order Center Today - http://www.icnsales.com