August 2007 - ICN E-Newsletter - Volume 7, Number 4
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In this issue:

1. Summer 2007 IC Optimist Now Available
2. September IC Patient Conferences - Ohio & Michigan
3. IC In The News - Former Dynasty Star Speaks About Her IC
4. The Latest IC Research News
5. New Children's Book on IC - My Mother Has Interstitial Cystitis: A Painful Bladder Story
6. Consumer Awareness - Diet Soda Proven To Cause Weight Gain
7. Clinical Trial Announcements - Urigen
8. American Pain Foundation Looking For Quilters & Artists
9. Self Help Tip of the Month - Finding A Compassionate Medical Care Provider For Your IC
10. IC Support Opportunities
11. The ICN Shop

Summer Introduction

It's been a very busy summer season here at the ICN made all the more challenging by a near fire in our office that destroyed one of our most important computers for the ICN. Luckily, all of the data was backed up and we've managed to accomplish our goals for this summer: the launch of our new book My Mom Has Interstitial Cystitis: A Painful Bladder Story, the completion of an expanded issue of the Summer 2007 IC Optimist and the development of our new on-line ICN Mail Order Division. Whew! But, we need your help for a new project! Writer Stacey Shannon is developing a comprehensive story on the needs of the seniors (over 60+) with IC and can use your help. Do you have some stories to share?? Were you, or your parent, mistreated or ignored due to their age?? Did you face any special challenges because of age?? Please e-mail us at: icnetwork@sbcglobal.net. You may be featured in the Fall 2007 IC Optimist!

1. Summer 2007 IC Optimist Now Available

Yahoo! This Summer 2007 issue is completed and will be delivered to our subscribers in the coming weeks! Our cover story explores the struggles of men with interstitial cystitis. Several studies suggest that only 10% of IC patients are men yet some physicians believe that the majority of men diagnosed with chronic non-bacterial prostatitis may be misdiagnosed IC patients. If that’s the case, then there are millions of men struggling with IC around the world. Stacey Shannon shares the experience of three men with IC, their struggle to obtain a correct diagnosis and to find effective therapies. Men, you are so NOT alone!

Bev Laumann contributes an indepth review of the new research presented at AUA 2007. She covers many new studies related to IC, including: cyclosporin as a possible treatment for intractable IC, new therapies under development (chondroitin sulfate, suramin), the continuing debate about the renaming IC, medical costs of IC , new methods of neuromodulation, cranberry, green tea extracts and much, much more. But one of the most interesting studies found that IC patients have an unusually high startle reflex.

We feature a lecture from Barbara Shorter, the registered dietitian who developed the first major IC diet study in New York that has proven that roughly 90% of patients do respond negatively to specific foods. This conclusive evidence can now be given to physicians, care providers, family who don't understand the importance of diet modification in reducing frequency, urgency and, most importantly, bladder pain. If you don't believe in the IC diet, you will after reading this lecture.

We also highlight William Beaumont Hospital, now one of the world leaders in IC research. Led by Ken Peters MD, this center not only does traditional studies, but they also explore topics that other researchers would ignore. Also includes an ICN Editorial, In the News, Conferencen Calendar and, of course, a yummy Fresh Tastes by Bev column!

Available: Print or E-mail (PDF file)

2. September IC Patient Conferences

It's conference season again and two IC patient conferences will be held in September.

ICA Regional Meeting in Detroit
September 8, 2007, 1-5 pm
The Sheraton Detroit Novi Hotel, Detroit, Michigan
Featuring Dr. David Burks & Donna Carrico NP

The 2nd Annual Columbus Regional IC Forum
September 15, 2007
Ohio State University College of Veterinary Medicine (Wexner Auditorium)
This year's meeting will provide an opportunity to learn from speakers who are authorities in various aspects of the treatment of IC and related disorders such as chronic fatigue syndrome, fibromyalgia, irritable bowel disease and chronic pelvic pain, as well as learn about recent developments in the understanding of the causes and treatments of these problems. For more information, please visit: http://www.iccolumbus.org/forum/index.html or email Tina Gilfilen at: ic1cols2004@yahoo.com.

3. IC In The News

Former Dynasty Star Speaks Publicly About Her IC
Patients in the 1980's were surprised to hear that popular actress Pamela Sue Martin (Dynasty, Nancy Drew, The Poseidon Adventure) had interstitial cystitis. She has rarely spoken about it until this month when she gave an interview to the UK's Daily Mail on, of all things, hair loss, a condition which she has struggled with for years.

She revealed, however, that it was her interstitial cystitis that forced her to leave Dynasty in 1984 at the peak of her fame. At a time when IC was poorly understood and few treatments were available, it's no wonder that she struggled for care. Pamela Sue said that she eventually found relief from a naturopath and the use of some herbs.

After Dynasty, Pamela continued to work in entertainment as a writer, director, actor and, most recently, author. You can catch up on Pamela's acting career and current pursuits by visiting her website!  We thank Pamela for speaking publicly about her health struggles. She proves, yet again, that IC patients can do amazing things!

4. The Latest Research Studies

IC Diet Study Published This Summer
Many of you should remember the appearance by Barbara Shorter in last Summer's 2006 IC & PBS On-Line Conference. She gave ICN users a first glimpse of the results from the first formal study conducted on diet and IC which proved that diet does exacerbate IC symptoms. You'll find a complete transcript of her lecture in our Summer 2007 IC Optimist magazine. This summer, the study was finally released in the Journal of Urology. Here's a quick summary. A validated questionnaire was given to 104 patients with diagnosed IC. More than 90% indicated that the consumption of certain foods or beverages caused their IC symptoms to worsen. The most frequently reported and most bothersome comestibles were coffee, tea, soda, alcoholic beverages, citrus fruits and juices, artificial sweeteners and hot pepper.

Source: Shorter B, Lesser M, Moldwin RM, Kushner L. Effect of comestibles on symptoms of interstitial cystitis. J Urol. 2007 Jul;178(1):145-52

Prevalence of Pelvic Floor Dysfunction in Patients with Interstitial Cystitis
Of seventy women referred to William Beaumont Hospital (Royal Oak, MI) for IC and/or pelvic pain, 87% had symptoms of pelvic floor dysfunction as determined by tenderness of the levator ani muscle during examination. Nearly two thirds of these women (64%) had their pain for 5 years or more, whereas one quarter (24%) had their pain for 1 to 3 years. Half of the women reported irritable bowel syndrome, and more than one third (36%) reported urge urinary incontinence. Ken Peters and colleagues concluded “If pelvic floor dysfunction is diagnosed in IC patients, then therapy targeting the pelvic floor musculature may be considered as part of a multimodality approach to treating IC.” We concur. Many clinics now offer physical therapists on staff or by referral to treat pelvic floor dysfunction promptly. It makes no sense to treat the bladder yet ignore any underlying pelvic floor tension which can also generate extreme pain and discomfort.

Source: Peters KM, Carrico DJ, Kalinowski SE, Ibrahim IA, Diokno AC. Prevalence of pelvic floor dysfunction in patients with interstitial cystitis. Urology. 2007 Jul;70(1):16-8.

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Is Abuse Prevalent in IC?
Rumors of the role of abuse triggering IC have circulated for many years. Clearly, many patients have no history of abuse yet, for those who tragically do, it could play a role in their medical conditions. Researchers at William Beaumont Hospital have released a study which suggests that IC patients have a higher than normal incidence of abuse. In their clinic population, 76 women diagnosed with interstitial cystitis were evaluated of whom 49% reported a history of abuse. Of those reporting abuse 92% reported emotional abuse, 78% reported physical abuse, 68% reported sexual abuse and 49% reported domestic violence. The researchers suggest that it is important for clinicians to assess for abuse in women with interstitial cystitis or pelvic pain and provide appropriate referral to psychologists or other health care workers to provide comprehensive care for managing their condition.

Source: Peters KM, Carrico DJ, Kalinowski SE, Ibrahim IA, Diokno AC. Fact or fiction-is abuse prevalent in patients with interstitial cystitis? Results from a community survey and clinic population. Urology. 2007 Sep;178(3):891-5.

Antibiotics Don't Prevent Future Urinary Tract Infections, May Cause Resistance in Future Infections
 After a first childhood urinary tract infection (UTI), daily antibiotics may not prevent another such infection, and may actually increase the risk that the next urinary tract infection is caused by resistant bacteria, according to a new study in the July 11 issue of the Journal of the American Medical Association. Patrick Conway, M.D. M.Sc., primary investigator of the study, said. "We found that daily antibiotic treatment was not associated with a decreased risk of recurrent UTIs, but was associated with an increased risk of resistant infections." Ron Keren, M.D., M.P.H., a general pediatrician at The Children's Hospital also offered "Given these findings, it is appropriate for pediatricians to discuss with families the risks and unclear benefits of daily preventive antibiotic treatment after a child has had a first UTI."   UTIs are common in children. In fact, of all the children born in one year, 70,000 to 180,000 will have a UTI by age six.

Source: The Children's Hospital of Philadelphia

Music Can Help Reduce Chronic Pain
A recent study published in the Journal of Advanced Nursing examined the effect of music on 60 people with chronic pain. Those who listened to music reported a 21% reduction in pain levels and a 25% decrease in related depression compared to non-listeners. Music listeners heard music through headphones for one hour a day for a week. Half of the music listeners chose their favorite music and the other half selected from a list of five relaxing tapes. Both groups showed consistent improvements. Music also helped people feel less disabled by the pain, which was the result of conditions such as osteoarthritis, degenerative disc disease, and rheumatoid arthritis. So, if you're struggling with pain, take a moment and fill your day with some music that can lift your spirits and, hopefully, ease your suffering!

Source: Siedliecki Sandra et al. "Effect of music on power, pain, depression and disability." Journal of Advanced Nursing 54.5 (2006):553-63.

5. Hot off the Press! New Children's Book on IC

"My Mother has Interstitial Cystitis: A Painful Bladder Story" is a very special book written for the young children of IC patients (ages 6+). Why? Children don’t understand most illnesses and we, as parents, often hide our struggles from them. Yet, no matter how hard we try, most children sense that something isn’t right. They can see that their mother or father isn’t feeling well. They notice the frequent trips to the bathroom and whispered conversations behind closed doors. They become confused when their normal daily routine is changed for a doctors appointment or treatment. It’s normal for children to become frightened if a parent is emotional or crying. They may become angry when mom or dad can’t take them to the park or a ball game like they used to. Some children might worry, unnecessarily, that their parent is dying. Children need guidance, encouragement and support during this stressful time.

In this book, Jan, the ten year old daughter of an IC patient, explains what IC is and offers an easy lesson on bladder physiology. In “The Great Bathroom Hunt,” she shares some funny stories about her mom’s quest to find the best bathrooms in town. Jan explains that her mom has a different diet and can’t eat some of her favorite foods, like chocolate or pizza. She talks about doctors and how they can help. Jan explains that her mom needs some help and shares her daily list of chores. She also includes her top ten list of fun activities that she can do at home when her mom isn’t feeling well. At the end of the book, you’ll find “The Great Word Hunt” and a resource list of web sites for more fun activities that can be printed out for quiet time at home.

We hope that Jan’s story will inspire many happy and productive conversations with your children! Talk about IC with each child individually. Give them the opportunity to ask questions and provide firm guidelines on what they can and can’t do if mom or dad isn’t feeling well. Teach them to ask for help from you and a medical professional (i.e. school nurse) if they aren’t feeling well. Remind them that illness does not change your love for each other. Yes, there will be moments of frustration and stress, but with great communication and a healthy dose of laughter, your family will not only survive but thrive after your diagnosis of IC.

8.5 by 11 - 32 pages
ISBN - 978-0-9797840-0-2
Publisher: J.H. Osborne, Inc.
Distributor: Interstitial Cystitis Network
Cost: $12.50 in print or $10 by email. Proceeds support the ICN's free patient support services.

Sample Pages - Please Click To See Enlargement

Sample pages:
Page 17 - My Mom Sees A Urologist
Page 19 - Even Mom's Need Help
Page 22 - Introducing quiet time activities

6. Consumer Alerts

Diet Soda Proven To Contribute To Weight Gain And Obesity
If you've wondered why we've seen such a dramatic increase in obesity in the last twenty years, it appears that the widespread use of nutrasweet and other artificial sweeteners is a strong contributing factor. Research released at the annual meeting for the American Diabetes Association this year has given the IC patient yet another reason to avoid all artificially sweetened products, particularly diet soda.

In an eight year study at the University of Texas, researchers made a surprising discovery. When comparing people who drank regular sugar soda vs. diet soda, the people who drank the diet soda had a much higher risk of weight gain. In fact, the study determined that with each can of diet soda consumed each day, a persons risk of obesity went up 41%.

Weight gain depended upon the quantity of diet soda drunk per day.

• 1/2 can a day of diet soda - 36.5% risk of obesity
• 1/2 to 1 can a day of diet soda - 37.5% risk of obesity
• 1 to 2 cans of diet soda a day - 54.5% risk of obesity
• 2 or more cans a day - 57.1% risk of obesity.

The real question is why? It may be that diet drinks actually stimulate the appetite. Research with rats found that animals fed artificial sugar craved more calories than those fed regular sugar. The human body may also wonder where the calories are when diet soda is consumed. It senses the sweetness and may expect sugar to arrive to provide energy. But, when the sugar doesn't arrive, the body may say "Where's my food?" and then trigger even more food cravings.

What boggles the mind are those people who, literally, refuse to drink water. They've spent a lifetime drinking only coffees, sodas and juices. It's no wonder that so many struggle with weight problems. But, without water, their urine becomes a veritable toxic stew. Perhaps this is why bladder irritation is one of the well known side effects of drinking diet soda, even in healthy people.

Read more about it!

7. Clinical Trial & Research Announcements

Urigen Pharmaceuticals, Inc. Initiates URG101-104 Phase II Pharmacodynamic Clinical Trial for Painful Bladder Syndrome/Interstitial Cystitis
(August 14, 2007) Urigen Pharmaceuticals, Inc. (URGP.OB), a specialty pharmaceutical company focused on the development of treatments for urological disorders, has initiated a double-blind, placebo controlled, cross-over study to investigate URG-101 as a treatment for acute symptoms of painful bladder syndrome/interstitial cystitis (PBS). The URG101-104 study will compare the efficacy of URG101 (intravesical lidocaine-heparin formulation) and placebo in reducing acute symptoms of PBS. The study will enroll patients at several U.S. clinical sites with the first patient having been enrolled and dosed. "The URG101-104 study is important for those patients diagnosed with Painful Bladder Syndrome," commented Bill Garner, M.D., Urigen's Chief Executive Officer. "Physicians currently treating patients with PBS have few treatment options, none of which address the patients' need for relief from acute symptoms."

8. American Pain Foundation Looking For Quilters & Artists

(From the American Pain Foundation)

Pain Quilt
In conjunction with the Lagniappe Project of Baltimore, the American Pain Foundation is calling for the submission of quilt blocks for the inclusion in a quilt which will reflect the experience of pain. Please create a 10” by 10” block or blocks that are made of fabric, or with a foundation of fabric. Other media (beads, fibers, feathers, etc.) may be used for embellishment. The blocks may be pieced or appliquéd, by hand or machine. They may be traditional or of original design. Please leave at least ¼” on all sides of the square for the seams which will join the squares together.

The blocks will each reflect the part that pain has played in the maker’s life. Quilts are a literal and figurative symbol of comfort and the joining of patchwork is a symbol of unity and community. Through the block design, construction, and joining to create a finished quilt, we hope that the artist finds comfort and unity. Deadline: September 1, 2007. Click here for more information.

Pain & Creativity On-Line Exhibit
If you love to paint, draw or create video's, the APF has a special program that you might be interested in. The Pain and Creativity network connects artists and their expressions of pain through an online exhibit of creative work. A select group of artists and their work will be honored and prominently featured with the American Pain Foundation and our project partner, the HealthCentral Network, through online and print publications. The pain and creativity community will be ongoing, but to be considered for this opportunity to be honored and have your work featured, we need your submissions by September 20th. Click here for more information.

9. ICN Self Help Tip of the Month - Finding a Compassionate Medical Care Provider

(By Jill Osborne, MA - ICN Founder)
The most frequent question that we receive on the IC Network is how to locate medical care providers who are compassionate and knowledgable about IC. While IC is now more known throughout the urology professional communities, there are still areas of the USA where knowledge is slim, particularly the Southern states. There are also some "old school" urologists who don't believe in IC or who provide minimal treatment. As thousands of patients can attest, finding the perfect doctor your first try is quite rare. Many patients see several before they find that "one" professional who truly helps them. Here are some suggestions that may help you in your search for a great IC medical care provider.

#1 - Locating Potential Candidates
Whenever you start a search for a new physician or physical therapist, the first place to begin is a local IC support group. Try to attend a local meeting where you can ask patients about their experience with physicians and also ask the group leader about those physicians and clinics that receive the best reviews. Click here for a current list of groups & group leaders.

If you're in a small town or a rural part of the country, look to nearby urban centers and, ideally, university affiliated hospitals and clinics. Universities are usually referred the most complex patients in their area, thus are the most adept at treating complex urinary problems, including IC. They are also tend to be more experienced at diagnosis. It's worth the drive!

The web offers several different physician finder services that are searchable by zip code, city or state that might help you locate more candiates.

• ICN Physician Listings - each has an interest in treating IC and/or other pelvic pain conditions.
• ICN Physical Therapist Listing - specializing in pelvic floor dysfunction
• NIDDK Research Centers - considered the best IC research facilities in the country
• American Urogynecology Association Find A Provider Service (medical association)
• International Pelvic Pain Society Find A Provider Service (medical association)
• AMA Doctor Finder (medical association)
• American Physical Therapy Association Find a PT Service (medical association)
• Ortho Urology Find A Doctor Database (pharmaceutical company)
• Medtronic Find An Interstim Specialist Database (medical device company)

Please note that some clinics and doctors change interests. None of these lists are perfect and may contain the names of the clinics that have changed direction away from IC. Thus, to rule those out, move to the next step, contacting the clinic directly.

#2 - Contact The Clinic & Request An Appointment
Call their office and ask if they treat interstitial cystitis. If they do, make an introductory appointment and please let the receptionist know that you would like some office time with the physician to discuss his approach to treating IC. Don't forget to bring your ICN Medical Records File or summarize your treatments and tests on just one or two sheets of paper.

#3 - Talk the doctor & support staff
During this first appointment, tell your doctor that you are looking for care for possible interstitial cystitis and that you would like to hear more about how they work with IC and/or pelvic floor dysfunction patients. Make it a point to ask the doctor a few brief yet probing questions.

1. How many interstitial cystitis/painful bladder patients have you treated?
2. What tests do you perform to make a diagnosis of IC? (Ask if you can provide test results done in the previous year by another professional.)
3. What treatments do you typically work with? (Preferably, you'll want a doctor who can provide several different types of therapies from oral medications, rescue instillations, other instillations etc. etc.) A worrisome point is if they mention the older, more outdated therapies as primary treatments, such as Chlorpactin, Silver Nitrate. If they mention the newer therapies, such as heparin instillations, in addition to the IC staples of antihistamines, antidepressants, Elmiron and even Botox, it shows that they are more up to date.
4. What treatments have you had the most success with?
5. What treatments have you found to be less successful?
6. If I have an IC flare, who would I contact in your office for assistance?
7. Do you work with pelvic floor dysfunction or make a referral to a local physical therapist who works woth PFD?
8. Do you provide pain care or make referrals for a local pain center?
9. What advice do you commonly give to your IC patients?

During the appointment, try to talk with the nursing and support staff. They are often the lifeline of IC patients and can be your advocate. Say Hi and ask them for tips on working with their clinic. You know... the classic do's and don'ts!

• Ask them what their policy is for a possible UTI. Can you drop by to leave a urine sample if you think you might have a bladder infection? Should you call first??
• Will the nurse advocate for you with the doctor, perhaps when you need prescriptions refilled.
• How easy is it to get an appointment, especially if you're in a painful flare?

#4 - Selecting A Provider
Ultimately, you'll have to choose someone based upon their experience with IC and their bedside manner. Are they knowledgeable about new treatments?? Are they experienced with IC? Were they kind to you?? If you're getting good vibes from the staff, physician (and the local support group) then you've found a clinic that is worth trying.

Fair warning.. your progress will depend upon the amount of effort you put into learning about IC, your treatment options, self-help strategies at home, diet modification, etc. etc. It's never good to walk into your doctors office and say "I'm desperate. I don't care what you do, just do something." There is no excuse for not knowing what a doctor puts into your bladder. You must be a part of the decision making process. Be an active participant. Bring your IC Survival Guide with you to appointments so that you and your doctor can discuss the pros and cons of any treatment. If not you, then who should take charge of your bladder? It's you!

#5 - If You're Asked To Leave
If a physician simply doesn't have any other treatment ideas, they may send you to a more experienced clinic or IC specialist. This is a good move. You want to be with the most experienced doctors in your region.  Certainly,  many patients have chosen to leave a practice on their own in search of someone who is more compassionate or skilled. This is your right and, in many cases, a good option.

But, if you've been "asked to leave" several physicians, take a moment and ask yourself what happened. A successful physician-patient relationship is built on trust, honesty and good communication. Some patients cross the line to the point that staff don't want to work with them anymore. They may call too often or are rude on the phone. They often refuse appointment times that are available. They may be late to appointments. Some show no determination to help themselves (i.e. the IC diet or participating in a pain management program.) Some simply ignore doctors instructions or fail to comply with a drug contract. Lying to your physician, particularly about medication, is doom.

Remember, how you act with your physician also reflects on the other IC patients in that practice. Show them that we are well prepared and active patients, determined to help. Your knowledge of IC, determination to be a proactive patient and acts of kindness towards staff may reflect on the next IC patient who walks through the door.

Comments?? Disagree with me?? Have a story to share??? E-mail me now at: jill@ic-network.com

10. Support Opportunities

On-Line Support Chats
The IC Network also offers live support group meetings in our chat room for patients who are too ill to attend local meetings. These chats are run by our dynamic team of support group leaders, Leslie, Kath & Linda!

2007 CHAT SUPPORT GROUP MEETING SCHEDULE
1st & 3rd Monday of the Month, 5PM PST to 7PM PST

Local & Community Support Groups
Search groups by state

Attention support group leaders!
(1) Please review your listing on our website and make sure that it is accurate. All support groups are welcome to be listed. Please let us know if we have missed any groups.
(2) Are you struggling to raise money for your group to handle mailings and phone bills?? You can distribute the best IC books and other items from the ICN Shop as an affiliate! We'll handle all the shipping and send you a donation for 5% of each sale! Please contact our office for more information!

11. The ICN Mail Order Division!

What's new in our shop?? Well, everything! From personalized accounts where you can track your orders to new bladder friendly foods, we're sure that you'll find products that can help you, today, manage your IC. Your purchase in this store underwrites the many free IC support and activities we offer through the ICN website.