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March 2007 - ICN Site News - Volume 7, Number 2
Read This Newsletter On The Web
In this issue:
1. Hot Off The Press! IC Featured in Woman's Day Magazine
2. IC & Taxes - Take Full Advantage of Medical Deductions
3. Coming IC Events - Bremerton WA, Boston MA & Houston, TX
4. Pregnancy and IC - Medication Safety
5. Research Update: The Risks And/Or Benefits of Hydrodistention
6. Clinical Trial Announcements - UCLA, John Hopkins Pain Study
7. Consumer Awareness - Ambien
8. 2007 ICN Forum Awards - President, Spirit, Courage Award Postings
9. IC Support Opportunities
10. The ICN Shop
1.  Hot Off The Presses! IC Featured in Woman's Day Magazine
Woman's Day Magazine Features Article on IC
"It Was Worse Than Childbirth"
It's rare to have an article that discusses IC, much less a family struggle with this puzzling condition. In the April 2007 issue of Woman's Day, sisters Michelle McDuffee & Mia Eddy share their courageous stories of life with interstitial cystitis, how their symptoms began and how they found care and relief. Great to share with family & friends. Available at newstands today! (pages 46-47)
2. IC & Taxes - Take full advantage of medical deductions
 Are your medical costs related to IC overwhelming?
Did you attend an IC conference last year?
Has your doctor suggested a treatment not covered by your health insurance, such as acupuncture?
Are you using food supplements
to help reduce your bladder symptoms??
If you're feeling the financial pinch during this years tax season, take heart! Many medical costs are tax deductible. ICN user JoyceV brought this to our attention by reporting that she was able to deduct some of the cost of the acupuncture treatments that her physician recommended. Her accountant simply requested that her physician write a simple letter which stated "Joyce V has interstitial cystitis. Acupuncture therapy would be beneficial to her condition." She was then able to deduct a portion of those acupuncture fees.
Our ICN tax accountant confirmed that a variety of medical costs are certainly deductible on the Schedule A tax form, including acupuncture. But, we're also excited to report that certain food supplements may also be covered. Apparently, the tax court has allowed deductions for "the extra cost of foods over the cost of a normal diet when prescribed by a doctor to alleviate a specific medical condition." Thus, a food supplement such as Cystoprotek may be deductible if your physician supports its use.
Kay Bell (Bankrate.com) reports that several other health related deductions are often missed by patients during the tax season, including:
• Travel expenses to and from medical treatments. For 2006, you can deduct 18 cents per mile. 2007 allows a 20 cent per mile deduction.
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Insurance payments from already taxed income, including the cost of long-term care insurance.
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Uninsured medical treatments such as an extra pair of eyeglasses or set of contact lenses, false teeth, hearing aids, and artificial limbs.
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Laser vision corrective surgery
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Medically necessary costs prescribed by a physician. For the IC patient, the cost of catheters for home instillations may be partially deductible.
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The cost of admission and transportion to an IC (and/or other medical conditions) conference is also deductible if you suffer from the chronic illness covered by the event. It will not, however, cover the cost of meals or lodging.
For more ideas on reducing your tax burden, please read:
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Kay Bell's article "Maximizing Your Medical Deductions."
- IRS Publication 502 - Medical & Dental Expenses
3. Coming IC Events - March & April
Don't forget to hold on to receipts for your registration and transportation fees to be used on your tax return for 2007!
Bremerton Washington IC Group features Dr. William Dean
On Saturday March 17th (11AM to 12:30), the Bremerton IC support group will feature Dr. William Dean. A practicing urologist, he will be speaking on interstitial cystitis and the use of complementary medicine. The event is at Harrison Medical Center auditorium. For additional information, please call Janine at: 360-698-1090
Boston Metrowest IC Group Dr. Jordan Dimitrakov
On Saturday March 24th, the Boston/Metrowest IC support group will welcome Dr. Jordan Dimitrakov who will be speaking on possible genetic causes of IC/PBS. Dr. Dimitrakov is currently conducting research
on the genetic causes of (IC/PBS/CPPS.) at the Harvard Urological Diseases Research Center. For additional information on the event, please contact group leader Molly Glidden at: icersmeet@aol.com
ICU Texas - Chronic Pelvic Pain Patient Education Day Conference
On Saturday, April 21, 2007 (8:30AM to 3:30PM), ICU Texas brings a stellar list of speakers to the Houston area to discuss pelvic pain and IC, including Dr. Daniel Brookoff, Dr. Christopher Jayne, Helen Dearman and Rachel Winer, PhD. Click here for additional information, registration and the event details.
Adding Meeting & Events To The IC Events Calendar
Support groups and patient organizations around the world are welcome to list their meetings and coming events in the ICN events calendar. If you are having a special event and are looking for guidance on fundraising, sponsorships, topics and/or educational materials, please contact the ICN today. We often assist groups in planning, promoting and/or sponsoring events. We're always happy to help!
View the 2007 IC Events Calendar
4. Pregnancy and IC - Medication Safety
 Deborah Erickson, MD and Kathleen Propert, ScD have made a much needed contribution to the IC community with their newly released journal article "Pregnancy and IC/PBS" released this year in Urologic Clinics of North America. While a visit to the ICN support forum will offer many stories of women who have had children after their diagnosis of IC, the use of common IC medications during pregnancy and their risk of causing fetal abnormalities have not been discussed in depth until now.
To disclose the potential safety and/or risk of various medications during pregnancy, the US FDA created a classification system based upon research findings for the medication. Studies with humans that show no fetal risk are ideal whereas studies on animals that show that the medication causes fetal abnormalities suggest that the use of that medication during pregnancy should be carefully considered.
The FDA classification system is as follows:
A - Adequate studies on humans have shown no increased risk to the fetus
B - Animal studies showed no increased risk OR animal studies showed an increased risk but other human studies showed no risk
C - No adequate human studies exist. Animal studies show an increased risk or have not been done.
D - Human studies show an increased risk "but the drug can be used if the benefits outweigh the risk"
X - Definite evidence of fetal abnormality exists. Treatments with this rating should NOT be used during pregnancy.
The article discusses the use of most IC therapies and provides an extensive discussion of pros and cons. Pentosan polysulfate (Elmiron) received the highest rating in the group with a "B." Amitryptiline, hydroxyzine and DMSO received "C" ratings. Intravesical lidocaine (aka rescue instillations) was discussed in depth with the authors suggesting that the "safest choice would be to instilll non-alkalinized lidocaine" to avoid the issue of systemic absorption and placental transfer. Corticosteroids received a "D" rating if used in the first trimester and a "C" throughout the rest of the pregnancy. These steroids have been associated with the development of cleft lip and/or palate.
The authors further noted that sacral nerve stimulators (aka Interstim) "should not be placed during pregnancy." Patients with existing stimulators should be aware that Medtronic recommends that the device be turned off for the entire pregnancy "because the effects of sacral nerve stimulation on the fetus are completely unknown."
Clearly, the most vulnerable time to the fetus is the first trimester. If you are considering pregnancy and are currently using any of the medications above, we strongly encourage you to locate this article in a local medical library and share its information with your medical care providers.
Reference: Erickson D. MD, Propert K. ScD, "Pregnancy and Interstitial Cystitis/Painful Bladder Syndrome" Urol Clin N. Amer 34 (2007) p. 61-69.
Dr. Deborah Erickson is a Professor in the Dept. of Surgery/Urology, University of KY College of Medicine, Chandler Medical Center, 800 Rose St., Room MS-269, Lexington , KY 40536
Other Links:
ICN "Considering Pregnancy" Forum!
ICN Pregnancy Journal - shares the story of Lesa's pregnancy and birth
Melanie's Pre-Pregnancy Checklist - helps couples plan a pregnancy
5. Bladder Necrosis Following Hydrodistention
While hydrodistention is generally believed to be safe and is often used as a treatment for interstitial cystitis, an article "Bladder Necrosis Following Hydrodistention in Patients with Interstitial Cystitis" released in the January 2007 Journal of Urology describes a rare and devastating complication, an almost total "necrosis" of the bladder wall that occurred in three patients. Necrosis (aka tissue death) occurs when blood supply is insufficient.
Who? One man and two women between the ages of 29 and 46 had a long history of IC symptoms and had previously experienced hydrodistention with "some therapeutic response."
How was it discovered? In these incidents, both women reported severe abdominal pain immediately after the procedure. The man reported pain after his foley catheter was removed. The pain was severe requiring narcotic pain medication. Additional examinations revealed debris in the bladder. Surgical exploration discovered that the necrosis had occurred through the full thickness of the bladder wall (sparing the trigone), leaving fragile gray tissue behind. The pathology report suggested that tissue death occurred due to an obstruction or destruction of vessels supplying blood to the tissue.
How was it treated? For the two patients who underwent surgical exploration, all gray tissue was removed until healthy bleeding tissue was found. Each patient then underwent an augmentation cystoplasty. The man, unfortunately, refused further treatment and was lost to follow up.
Are complications common? The complications from hydrodistention procedures are poorly documented in the journals. According to this article, the most common are gross hematuria (bleeding) and bladder perforation. The authors state that "Bladder perforation occurs in 2 to 8% of cases and it is more likely to occur with prolonged distention and/or after biopsies." This article is the first case report of almost total bladder necrosis though one additional article revealed a case where a small area of necrosis was found after hydrodistention.
Why did it occur?? The authors report that necrosis is an unsual and rare complication and that the cause is "unknown." They suggest that the hydrodistention may have obstructed blood flow in local blood vessels of the bladder. Apparently some animal studies have shown that blood flow can decrease depending upon the volume of water used in the procedure and pressure that occurs. The authors further note that two of patients also had a chlorpactin instillation which may have contributed.
Conclusion: IC patients are often frightened by the concept of having a hydrodistention. Luckily, a hydrodistention is now less frequently used to diagnose IC/PBS in favor of other less traumatic methods such as the PUF questionnaire. But it does have an important use. A hydrodistention is required if a physician would like to conduct a biopsy. Hydrodistention clearly has some risks. At a minimum, this article suggests that combining a chlorpactin treatment with a hydrodistention, especially if the bladder has sustained any injuries during the procedure, may be unwise. The use of higher volumes and pressures during the procedure may also be a risk factor.
Dr. Deborah Lightner of the Mayo Clinic provided an official editorial comment from the Journal of Urology at the end of the article that captures our viewpoint as well. She says "Given the lack of placebo controlled trials of cystodistention or of chlorpactin for PBS, it behooves the surgeon to first do no harm." She and the authors reiterate that distention is no longer diagnostic for IC/PBS and is rarely therapeutic in the long run. Makes sense to us!
Source: Zabihi, N. et al. Bladder Necrosis Following Hydrodistention in Patients With Interstitial Cystitis, Jurol, Vol. 177, 149-152, January 2007
6. Clinical Trial & Research Announcements
UCLA Launches Complementary Medicine Study
PROCAIM, which stands for People-Reported Outcomes from Complementary, Alternative, and Integrative Medicine, was developed under a grant from the National Center for Complementary and Alternative Medicine to enable large-scale research on (1) the effectiveness of the full range of mind/body medical interventions and other complementary and alternative therapies, and (2) the interactions among stress, pain, and responses to the various available treatments. It can collect a wide range of information directly from patients using standardized questionnaires that address changes over time in symptom severity, spirituality, optimism/pessimism, mood, stress and coping skills, and quality of life. It can also serve as an information resource for patients and participants in health-enhancement activities. The research project is being conducted by faculty in the UCLA Schools of Public Health and Medicine. http://www.procaim.org
Interstitial Cystitis and Pain Study
Interstitial Cystitis Study: Researchers at Johns Hopkins Hospital are looking for women to participate in research studies concerning the mechanisms of pain in interstitial cystitis. If you are between the ages of 18 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.
(Support: NIH/NIDDK; Principal Investigator: Ursula Wesselmann MD, Dept. of Neurology, Johns Hopkins Hospital.)
Info: 410-614-4965; womensresearch@jhmi.edu
(RPN 97-08-15-01 Approved 2/20/2007 by JHIRB)
7. Consumer Awareness - Ambien Recall
FDA notified healthcare professionals of its request that all manufacturers of sedative-hypnotic drug products, a class of drugs used to induce and/or maintain sleep, strengthen their product labeling to include stronger language concerning potential risks. These risks include severe allergic reactions and complex sleep-related behaviors, which may include sleep-driving, sleep eating, sleep cooking adn making phone calls. Sleep driving is defined as driving while not fully awake after ingestion of a product, with no memory of the event. Read the full alert.
8. ICN Forum Award Winners
 Did you know that more than 16,000 IC patients have registered in the ICN Support forum or that our site now provides more 300,000 support and/or educational sessions per month? We've grown and it shows, particularly with the expansion of our volunteer team of moderators and supermoderators who keep the discussions flowing with compassion and integrity.
With this growth, we've also made several changes in 2007. Due to some inappropriate conduct by anonymous guests and spammers, we now require that patients register and log in before they can view posts. Don't worry, it's still FREE but it now provides much greater security and protection from spammers. We're adding about 30 new patients a day right now!
We've also added several new awards to acknowledge those IC patients who contribute informative and supportive postings. We're highlighting a few of these here! Bravo to all of those award winners.
9. 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!
WINTER 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!
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.
10. The ICN Shop!
New Additions
Overcoming Pain by Haworth Press
 Overcoming Pain is a new, wonderful resource for patients struggling with chronic pain. William Rowe, Executive Director for the the American Pain Foundation says 'The authors... have succeeded in providing a resource that is both comprehensive and simple. It takes the reader through the ABC's of pain, including the basic science of pain, information about assessing pain and the ins and outs of the medical system.'
The bulk of the book discusses pain treatments, particularly medications and their appropriate use and dosages as well as pain procedures, the use of opiates and alternative therapies. Showing their true compassion and knowledge of patients struggling with pain, the book also offers practical suggestions on how to work with physicians as well as handling a daily life while struggling with pain. $16.95 Buy it now!
ICN Affiliates Wanted!
The ICN Shop is delighted to work with IC & other health support groups, website & blog owners and patients who would like to distribute the best IC books, resources, cushions, supplements and low acid foods. Just like amazon.com, we offer a sales commission of 5% for orders referred to us. Best of all, we do all the work, including processing the order and shipping the products and you receive a check! Click here for more information!
Available Next Week
Prelief in a powder form!
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