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Breaking News - New Urine Test for IC Awaiting Patent

Based upon the research of Susan Keay (Univ. of Maryland) who discovered the Antiproliferative Factor (APF) in the urine of IC patients, a new method for diagnosing IC may be soon available. Led by Sonia L. Planey, Asst. Professor of Biochemistry at The Commonwealth Medical College, the APF biomarker can be detected in as little as 30 minutes with a simple urine sample and at a much lower cost to patients. Best of all, it may eliminate the need for more invasive procedures such as hydrodistention. A provisional patent is pending for their findings: Cell-Based Detection of APF for Diagnosis of Interstitial Cystitis.

We do not know when this will be available for general use. Further research is still being conducted to test for its accuracy and effectiveness. Dr. Planey will be working with OB/Gyn physicians in Northeastern Pennsylvania to conduct that testing. Read the full press release at: http://www.ic-network.com/forum/showthread.php?t=58781

Ketamine Abuse Triggers Hunner's Ulcers

Ketamine Bladder SyndromeWhen new IC support group leader Shereen convened her first meeting in Kuala Lumpur earlier this summer, she was stunned to find the room filled not with typical IC patients, but with young, teenage ketamine addicts. She may be the first IC support group leader to see this tragedy and the tremendous toll it appears to be taking on young adults around the world.

In recreational and/or criminal use, ketamine is known as a “date rape drug” and has quickly outgrown heroin and methamphetamine as the drug of choice due to its low cost and easy accessibility in many parts of the world. It is commonly used at RAVE parties and is known as a “Club Drug,” often mixed with ecstasy.

Ketamine bladder syndrome is a fairly new reported side effect to K use. In the past two years, clinicians in Asia, Canada and Europe have reported treating young, teenage ketamine abusers who appear to have severe and possibly irreversible bladder damage.   In 2007, clinicians from Toronto (Canada) described nine patients who were daily ketamine users and who presented with severe dysuria, frequency, urgency and gross hematuria. At cystoscopy, all patients had severe ulcerative cystitis. Clinicians in Hong Kong (China) shared a similar presentation of ten street ketamine users diagnosed with ulcerative cystitis .

In 2008, Drs. Colbunders and Van Erps (Belgium) described the case of a 20 year old man who presented with a seven month history of urinary frequency, nocturia, urgency and pain during urination, as well as episodes of severe bleeding from the bladder shortly after beginning recreational ketamine use. The researchers conclude “We expect that in the future an increasing number of cases of cystitis caused by ketamine use will be seen in young adults.”

The largest study to date was released by researchers in Hong Kong in December 2008. They offer an alarming study of 59 ketamine users with moderate to severe lower urinary tract symptoms, dramatically reduced bladder capacity and increased frequency. 71% of these patients had bladder mucosal inflammation similar to IC.

Ketamine has been available in the USA for over a decade. The DEA reports that Mexican Drug Cartels distribute ketamine through the Mexican border. It is also imported from China, where it is often cut with ground glass or white paint. Robert Moldwin MD (New York) has recently seen ketamine addicts in his clinic and reports that treatment with intravesical instillations may help.

Ketamine can be legitimately prescribed to pain patients suffering from severe neuropathic pain or for malignant or “end of life” pain control. When used properly and under supervision, ketamine can be quite helpful in reducing pain. Thus, we don't want to discourage its use for pain control, but we do want to raise awareness about its misuse.

Please help us! Read more about it on a new website - http://www.ketaminebladdersyndrome.com

Back To School - Handling Bathroom Access For IC'ers In School

(By Jill Osborne, MA) With a new school year fast approaching, it's important for parents to consider restroom access for any children or teens who have bladder problems, including interstitial cystitis. Our goal is to maintain the dignity and self-respect of these precious children.

Unfortunately, there are numerous obstacles. Some schools lock bathrooms during the school day for security reasons or only leave one bathroom available for the entire school body. Teachers may ask students to "hold it" rather than granting them access to use the restroom.

One ICN member shared that she dropped  out of high school in her junior year because she was not allowed to use the restroom often enough and often struggled with severe pain in the classroom. (She did eventually graduate!)

Back To SchoolIf you are a parent of a child with IC, we have a few suggestions:

#1 - Talk with the school nurse and explain that your child or teen has interstitial cystitis and will require, on occasion, immediate restroom access. Bring some articles to explain if necessary. We have a list of professional educational articles that you can print from our website.

#2 - Ask the nurse to educate other school staff, aides and teachers so that if your child is visiting in another classroom or the library, they can seek restroom access without embarassment.

#3 - When speaking with the teacher, emphasize that interstitial cystitis is not just a child seeking attention or asking for special privileges. An IC patient has an immediate and urgent need to use the restroom due to irritation, inflammation and/or ulcers in their bladder. The longer the delay, the more irritation and discomfort the student will experience, including potentially severe pain. Asking a student to wait even five minutes for recess can be very uncomfortable.

#4 - Ask the teacher to create a non-embarassing way for your child to ask for restroom access. It might be as simple as holding up a book, a post card or standing by the door. Forcing the child to ask to use the restroom in front of the other students can be very embarassing.

#5 - Ask the teacher to leave a note for any substitute teachers about your childs need for immediate restroom access.

#6 - Encourage the teacher to report back to you any unusual symptoms, such as a dramatic increase in your childs symptoms, so that you can monitor your childs symptoms and behavior.

#7 - School trips and bus rides - Just like adults, children and teens with IC may find sitting in a car or long school bus rides hard. If your child is going on a field trip, make sure that you ask for accomodation for their restroom access. Yes, it can be very embarassing for the school bus to stop for one student but it can work. Better yet, most schools now have parents who drive children in their family cars. This is ideal for your child. If you have any field trips coming up, you may want to consider offering to be a driver to help make restroom access easier. Your child will greatly appreciate your help.

#8 - Remind your child that IC is not their fault and that they have done nothing wrong. Acknowledge the fact that it might be embarassing to them and seek ways to reduce that embarassment. Let them know that it is okay to ask to use the restroom as often as they need to. Let them know that school nurse and/or office can help them if they are feeling poorly. There is no shame nor blame in having a bladder with an "owie."

#9 - For after school activities such as Scouting, 4-H or sports, take a moment and pull the leader or coach aside to explain IC and that your child will need restroom access. Remind them that asking your child to "hold it" can result in more severe symptoms and possibly pain. Ask for their support and for dignity for your child.

#10 - After a few days or weeks, ask how school is going. Is anyone giving them a hard time about using the restroom?? Are they being teased?? If so, contact the school and/or teacher again and ask, more firmly, for their help in caring for your childs illness. Disability law and rights are vital here. Ask about how the school supports disabled students. Ask for any disabled student policies. Ask if there is a disability expert at your School District office to advocate for you and educate school personnel about their responsibility towards those students with physical challenges.

ICN Support Leader LeeLee offered an excellent suggestion in a discussion about this in the ICN Support Forum. She suggests asking your doctor to write a note explaining why and how often your child must use the restroom. Then, take thet letter to the school and have the principal sign it. Copies should then be made and distributed to all of the teachers. It's also important for the child to keep a copy of the note in their pack, purse or wallet.

Do you have any more suggestions?? ideas?? comments??? Please share them here!

The Latest IC Research

Case Western Reserve University receives $3.7M NIH grant to study autonomic nervous system link to painful bladder syndrome

CLEVELAND – July 23, 2009 - Case Western Reserve University School of Medicine has received a $3.7 million grant from the National Institutes of Health to determine if painful bladder syndrome may be caused by abnormalities in the autonomic nervous system rather than in the bladder itself.

Principal investigator of the project is Thomas Chelimsky, M.D., professor of neurology at the Case Western Reserve University School of Medicine, and director of autonomic disorders at University Hospitals Case Medical Center and the University Hospitals Neurological Institute.

Sites participating in the five-year study are University Hospitals (Drs. Chelimsky and Jeffrey Janata), The Ohio State University (Dr. Tony Buffington), Cleveland Clinic (Dr. Ray Rackley), and Summa Health System (Dr. Brad Fenton).

"We have found that other autonomic disorders often occur in both the patients themselves and in the family members of patients with IC/PBS. We therefore propose to determine whether the main abnormality in IC/PBS actually lies in the autonomic nervous system rather than the bladder itself," said Dr. Chelimsky.

The autonomic nervous system is in charge of all internal organs such as the bowel, the bladder, blood pressure and heart rate. For obvious reasons, diseases that affect the autonomic nervous system are sometimes misdiagnosed as diseases of the internal organ itself.

"IC/PBS may actually be a member of a larger family of disorders that share a family predisposition for abnormal central autonomic and sensory responses to stress, pain or threat, usually first appearing following a traumatic event such as infection and injury," continued Dr. Chelimsky.

In the new study, the researchers will do this through measurements of autonomic function and sensation in patients who have IC/PBS, both at rest, and under controlled psychological stress. These research subjects will be compared with healthy patients, and patients with chronic pelvic pain without IC/PBS.

"We've designed the study to lead to a better understanding of the causes for this condition and to lead to possible suggestions for new treatments," said Dr. Chelimsky.

New Botox Bladder Instillation Appears Promising For the Treatment of Overactive Bladder Symptoms

The challenge with using Botox as a therapy in the bladder has been the method of use. Up to this point, Botox has usually been injected into the bladder wall, thus requiring anesthesia and outpatient surgery. But, if Botox were available in a simple instillation, it's use might be much less traumatic. Researchers at the Mayo Clinic (Jacksonville FL) have finished Phase I/II studies which determined that botox can be administered in a bladder instillation, using DMSO as a carrier. The challenge, however, was that the results were not long term nor durable. They are currently pursuing a Phase III placebo controlled study to further test this unique method of action.  Read more!

More New "Living With IC" Videos

Videos have opened up many new opportunities for patients to gather essential information about IC. Whether it be the IC diet, understanding related conditions or just working with skeptical family or friends, we hope that the ICN Video Library will give you some new ideas and strategies. Most feature ICN President Jill Osborne but we're looking for more! If you have a video that YOU filmed or you have idea for a video, please let us know! We'd love to hear your thoughts and possibly share your video with our membership too!

You can also subscribe to our video channel on youtube by visiting - http://www.youtube.com/icnjill/.

Our Video Library

Beaumont Produces New Pelvic Pain, IC and Vulvodynia CD

Guided Imagery to Enhance HealingWe're delighted to announce that a new CD focusing on the reduction of pelvic pain has been produced by the WISH program at William Beaumont Hospital (Michigan). That group never ceases to amaze us for their creativity and desire to help patients struggling with pain. They will shortly be releasing a CD for men with pelvic pain as well!

This latest addition is titled "Guided Imagery to Enhance Healing For Women With Pelvic Pain, Interstitial Cystitis or Vulvodynia" and is a perfect complement to their first CD but uses a "beach scene" to create a relaxing, healing environment.

What does the CD do?? It will walk you through a guided relaxation to help calm your pelvic region, muscles and, of course, your spirit. Patients report that they feel relaxed, comforted and have substantially less pain when using a guided relaxation each day in addition, of course, to their normal treatment regimen.

This is the first CD that we are aware of that also covers vulvodynia and vaginal pain.

Now available in the ICN Shop for just $15.00 ($12.75 for ICN Angel Subscribers)   Read more or order it now!

Upcoming Events

ICA Announces August 23rd Meeting in Atlanta

ICA Forum: A to Z on IC will be held at the RenaissanceWaverly Hotel in Atlanta GA. It will featurie Dr. Jeffrey Proctor and Dr. Anna Kelly. A webcast will be held for patients who cannot participate live! Registration is free and open to the public. The deadline for registration is August 7th, 2009. Click here for more info!

Self-Help Tip of the Month - Finding The Safest Drinking Water Is Crucial

Editors Note - Never doubt the wisdom that can come from other experienced patients. Case in point is ICN Member Beth (BT2008) who posted a superb self-help in the ICN Support Forum on finding water that is more bladder friendly! We'd like to thank her for sharing this great information with all of us!

WaterHey All,

For everyone suffering with IC, finding the safest drinking water is probably one of the most important treatments that we can do for ourselves, without a doctor's appointment and without a prescription.

For over eight-months I drank Brita Filtered Water almost exclusively, or on occasion I drank store-bought bottled water (I never could afford Evian). But, rather than take a chance on our public tap water, I assumed that by filtering the tap water that I was removing all of the harmful chemicals in it and saving a lot of money in the process! I was convinced, without question, that I was doing the very best thing I could do for my diseased bladder. And, paying $20.00 every couple of months for the filters was well worth the price of saving my bladder from further destruction!

Well, I was wrong. Very wrong, in fact. In short, back in April--much to my amazement--I discovered that the Brita Filtered Water I had been depending upon to sooth and protect my bladder actually had a pH of less than 5.0, which is VERY acidic!! I couldn't believe it! I had essentially been drinking acid-water for months! Then, when I checked our tap water to see how much more acidic it was, assuming of course that it was more acidic, I was totally stunned to find that it actually had a pH of 7.0--which is perfectly neutral!! And, perfect for my IC bladder!! I immediately poured out the filtered water and started drinking the tap water. And--I kid you not--within 2-3 hours my pain had significantly decreased at least an entire level or more!!

Apparently, the Brita Filter had been so good at what it did, it filtered out all of the good minerals in the tap water!! The minerals that maintained its' perfect pH balance. I had been stripping our perfectly balanced tap water of all the essential nutrients by "trying to make it a better water!" Since then, I have used the pH testing strips to check quite a few different bottled waters as well, and our tap water is still the most perfectly balanced water that I can drink for my bladder!

pH Test StripsThe moral of this story is: Do not make the mistake of assuming that just because it costs more, or because "it's bottled" that any water is a superior water to that which comes straight out of your water faucet. Invest in some pH testing strips (about $10 for a lot of strips) and check the local water in your area and compare it to the bottled waters you have been drinking. I promise, it is well worth the $10.00, because if you have been drinking less than a 6.0 pH drinking water, and you start drinking water that tests between 6.0 and 8.0 (preferably 7.0), then you too will be able to tell a significant difference in your pain and other symptoms! (No, it is not a cure, but it does make a huge difference!) -Beth

pH Test Strips are available in the ICN Shop!


We're Looking For Medical Care Provider Recommendations

ICN Locate an Medical Care ProviderIn the past year, we've had more than 150 physicians, nurses, physical therapists and clinics around the USA recommended by patients who felt that they were treated compassionately by that clinic. Your comments showed that there are, indeed, many medical professionals who want to work with IC patients.

We're ready for more suggestions and recommendations. Who better to tell us what medical care providers are the best than you, the IC patient. 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!

Consumer Alert  - False On-Line Scams & Reviews Revealed

Editors Note - We were so glad to see this article released via Associated Press. The IC community has LONG struggled with the false marketing of "cures" for interstitial cystitis. Usually, it's a sales representative pretending to be a patient claiming that they found their cure. In one frustrating yet memorable case in our support forum, it was a representative of a publishing company that masqueraded as a patient, claiming that a book had cured her IC. Yes, they were stupid enough to use the email of the publishing company. Similarly, on various "alternative websites" across the web, you'll find countless "testimonials" from "patients" that are DUBIOUS. Why? As this article proves, some companies create fake reviews to generate sales. Are they really patients?? Are you sure they don't have a profit incentive? Is it real or imaginary? You must be a smart, wise, and cautious consumer. If it sounds too good to be true, it is too good to be true! - Jill

Whose 5 stars? Online `user' reviews get scrutiny

JENNIFER PELTZ - Associated Press

False claims The Web site said an herbal remedy could cure cancer and offered miraculous firsthand accounts. One woman offered to "share my experience": The formula had routed her lymphoma, sparing her radiation treatment, she said. What she didn't mention is that she also owned the company selling the product she praised online, authorities said.

A growing number of regulators, trade groups and site owners are cracking down on so-called "AstroTurf" marketing _ seeding the Internet with seemingly grass-roots testimonials, reviews and comments that aren't as organic as they seem. The Federal Trade Commission told Bacon in a settlement last fall to tone down her claims and change her promotional tactics. And this month, New York Attorney General Andrew Cuomo announced a $300,000 settlement with a cosmetic surgery firm he said had employees pose as clients to write glowing testimonials and online journals.

The FTC plans to vote this summer on updating 29-year-old guidelines on endorsements, making it clear they ban phony online reviews. "While we did not have such a thing called blogs or Twitter or the social media out there in 1980, the same principles about transparency and truth in advertising apply," said Richard Cleland, assistant director of the FTC's advertising division.

The European Union has responded by directing member countries to ban falsely representing oneself as a consumer, and other trade groups and businesses are deleting suspect reviews and issuing apologies. Still, some experts say it may prove difficult to enforce traditional truth-in-advertising standards on the freewheeling, ever-expanding Web. Read the full article here!

Brookstone Recalls Concentrated Acetaminophen

Brookstone Pharmaceuticals (Alpharetta, GA) has initiated a nationwide voluntary recall of all lots of Concentrated Acetaminophen Drops (NDC#42192-504-16) in 16 ounce (473 ml) bulk containers. This 16oz container is comparable to the size generally used to package regular strength acetaminophen liquid preparations. Read more!

New Bladder Friendly Recipes

ICN user KRISILLIS obviously loves to cook and it shows. These recipes use veggies fresh from the garden and are perfect for the late summer season! ! IC Diet: Recipes and Menu Ideas Forum

Rosemary Roasted Veggies - ICN Member krisillis

This recipe is really good for a potluck although there is no reason why you couldn't downsize it and cook it for yourselves. I tested this one out on my extended family. And not only did they gobble it up in a hurry, several of my Aunts asked for the recipe. So I thought I'd pass it along. The veggies I'm listing are what I used and are suggestions please feel free to add or subtract veggies of choice.

Ingredients:

2 sweet potatoes
4 red potatoes
2 parsnips
2 carrots
1 eggplant
1 zucchini
4 sprigs fresh rosemary
1/4 cup italian parsley (chopped)
1 clove garlic (optional)
Olive oil.

Peel and chop veggies. Add to a ziploc bag with herbs. Drizzle with olive oil and shake. Marinate in fridge overnight (or for at least 4 hours). Spread in a shallow dish. Season with salt & pepper if desired. Bake at 350 F for 40 mins or until veggies are tender. Enjoy!

We're now looking for more seasonal recipes for autumn, with an emphasis on harvest veggies like squash, pumpkins, mushrooms, zucchini. Please share your favorites with us today in our ICN Recipe & Menu Forum.

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

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

 

IC Resources From 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!

More Samples Now Available

When we first introduced samples earlier this year, we had no idea they'd be so popular. In fact, we were cleaned out within just two weeks. The good news is that we have increased our stock and added some items that you might want to play with. Puroast Low Acid Coffee will soon be offering a sample program and we'll be getting those samples within a month or two. Please note that all new Angel subscribers receive complementary samples with their orders!

Heathers IBS Sample Packet  - $1.99 - contains acacia fiber, peppermint oil capsules, fennel tea, peppermint tea

Bodiheat Heating Pad - $.99

Basis Soap Sample Bar - $.99 - for uber sensitive skin!

Cystoprotek Sample Capsule - $.99 - just four capsules to test your sensitivity, if any, to the supplement.Cinnamon Pear Jelly

Now Available - Cinnamon Pear Jelly!

Now in a bigger size! A beautifully translucent jelly with a cinnamon stick right inside the jar, this jelly has just the right consistency with a bright pear and cinnamon flavor. This product from A Perfect Pear is a favorite served on toast, over cottage cheese, as a filling in cakes or as a condiment served with lamb. This jelly received a 2nd place ribbon at the California State Fair!

Price: $8.49 Learn more or Purchase

What's New in the ICN Shop

Hint Essence Water
Are you tired of drinking plain water? Desperate for some flavor for these hot summer and fall days? We found this new water company at the Fancy Food Show and were VERY impressed. They were flavorful, absolutely refreshing, contained no sugar AND no bladder irritating preservatives. Comes in three flavors: pear, blackberry and watermelon.

Learn More or Purchase

 Hint Essence Water

Women's Encyclopedia of Natural Medicine

Many patients want to explore alternative therapies but finding a reliable resource to guide them has been very difficult, until now. Tori Hudson ND has a contributed a beautifully written book for women who would like to learn more about alternative therapies for conditions such as abnormal bleeding, endometriosis, cramping, PID and menopause. But, her chapter on IC is easily the best discussion we've ever seen, describing an in-depth protocol that she has used with success in her clinic and cites the research to back it up! If you're interested in alternative medicine, this is a MUST HAVE book.

Learn More or Purchase

Women's Encyclopedia of Natural Medicine

Bladder Ease by Vitanica

Our newest supplement, Bladder Ease by Vitanica, contains Quercetin, Glucosamine, and L-Arginine with other ingredients to provide bladder mucosa support*. Based upon the research by Dr. Tori Hudson, author of the above book, it includes several of the ingredients found in other popular supplements, but in a brand, new formula.

Learn More or Purchase
Bladder Ease

Organic Low Acid Jams

Colorado Mountain Jams is our new find of the year. They make the most delightful jams that are also lower in acid than most. We're now carrying several flavors including pear, peach, spicy peach, apple pie and more. NO ADDED ACIDS! $6.49

Learn More or Purchase!
Pear Jam

Commandos Organic

These are soft, cotton pads that can be used as an underwear alternative!

100% cotton suede jersey

Learn More Or Purchase
Commandos

Perineal Cold Packs

Some patients find that a cool sensation, as opposed to gentle heat, works to help calm and soothe their muscles and/or their perineal area after sex. These one time use perineal cold packs are the same you find in most hospitals and are often used after various examinations and procedures. Easy to activate, packs help diminish swelling and promote healing. $3.49

Learn More or Purchase
Peri Cold Pack

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