The IC Underground

Action Alert: National Vulvodynia Research Advocacy Week 2007

Please do your part and TAKE ACTION to communicate the urgent need for federal funding of research on chronic gynecological and pelvic pain. Whether you are a patient, healthcare provider, or family member/friend of a woman who suffers from chronic gynecological/pelvic pain, we need you to write to your U.S. Senators and Representatives during NVA’s Third Annual Advocacy Campaign, April 16th to 20th, 2007.

Click here for more information - https://secure2.convio.net/apf/site/Advocacy?pagename=homepage&page=SplashPage&id=211

We’ve all seen it before. Ten years ago, someone suggested that magnets could cure IC. Wrong!!! Then it was dozens of brands of vitamins, supplements and, yes, for those super gullible patients, you can even buy a sugar pill from a website that suggests that it can prevent the onset of IC. These are ALL absurd yet, today, more and more web advertisements appear promising a “cure” to many different illnesses, including IC.

Let’s take a closer look at one ad “An Amazing Discovery Cures IC”

If you clicked on it, you’d be taken to a one page website that has only one goal. To get you to pay $29.99 to buy a book by an author that few, if any people, know. We see no medical credentials, no research citations, nothing other than an emotional pitch designed to get you to fork over your precious dollars for an e-book.

They share a few patient stories that are designed to draw you in. Strangely, though, they appear quite old. One refers to a therapy, silver nitrate, that is rarely done for IC and has been out of favor as a therapy for many years now. Another refers to a “famous” Beverly Hills clinic that was closed SEVERAL years ago after the physician in charge had her medical license suspended for five years, in part, due to her treatment of IC patients. They offer some testimonials but, then again, we don’t know if these are real testimonials.

They then criticize doctors for daring to prescribe medications (aka drugs) that treat the symptoms of IC without going to the “root” of the problem. Of course, that is the million dollar question. If we know what caused IC, we could then create a cure but research has yet to tell us why the IC bladder produces the antiproliferative factor which slows down healing. I can assure you, though, that as soon as the cause of IC is discovered and verified by credible researchers, it will be presented at urology conferences, in journal articles and released to the general public & scientific community at NO CHARGE!

Lastly, the website shares that they have miraculously discovered “the actual cause” of IC which you can learn about by paying $29.99 for an e-book! Of course, there are no sections of the book to preview. No quotes from the book that suggest what this cure is. They basically say “once you read it, you’ll believe it.” NOT!!! We are not this gullible!

If this individual has discovered the cause of IC, why hasn’t she shared this with the research community? Why hasn’t she spoken at IC events to offer comfort to others, particularly those who don’t have access to the internet?? What are her creditials?? What physicians, if any, has she worked with to verify that her suggested treatments are safe and reliable?? If she has discovered the cause of IC and released her information to the medical community, she could shorten the search for the best treatments for IC by years and reduce the suffering of tens of thousands of patients.

This bothers me! As much as I would like to say that we have a “cure” for IC, we don’t. We don’t know why those of northern european heritage seem more prone to IC. We don’t know why Cherokee Indian men appear more prone to IC. We don’t know why the bladder produces the antiproliferative factor which then slows cell growth and healing in the bladder. We’ve only recently discovered one connection between IC and IBS, which is a shared C-fibre afferent nervous system.

What we do know, however, is that IC does have a genetic component and that some families, like my own, can track IC back several generations. In our case, the “cure” would likely be gene therapy which is years away from fruition.

The great news, however, is that we DO have treatments that help. Rescue instillations, for example, calm the nerves in the bladder and can turn off pain, flares and discomfort. Antihistamines can control daily inflammation. Even new OTC “quercetin” based supplements have solid RESEARCH behind them which prove that they can help reduce the symptoms of IC.

Tony Buffington, an accomplished IC researcher at Ohio State University, was asked about product safety in a guest lecture on the ICN website. He said:

I was taught to be wary of “experts” who say:

• that diet causes disease (although it is true that all patients were eating when they became ill)
• that processed foods are “poison”
• that natural vitamins and minerals are better than synthetic ones (without evidence in a relevant population)
• that they or their products can produce miracles
• that they are victims of a conspiracy
• that they offer only testimonials (which are by definition positive) to support their claims
• and finally, that they have something to sell (usually at a high price!)

The antidote to all this is some advice that is 4000 years old; don’t accept it, don’t reject it, check it out! And in medicine, the way to check it out is evidence-based medicine. This means asking the question… what is the evidence that this treatment is safe and if it is safe, what is the evidence that it is effective?

So, buyer beware. Please be a cautious and informed consumer. Be wary of anyone claiming to “cure” or “heal” IC. Or, atleast, ask for a research study which supports their claim and also ask them why they haven’t shared their discovery with the world!

Jill O.

Here’s a question that we just took from an IC patient in South Africa!

Q: “I was just reading up inthe latest newsletter about vitamin C and other supplements. I am very worried about not being able to take vit c. I worry about getting cataracts, other eye problems, etc. Besides not being able to boost my immune system, in the event of colds and flu etc. What can I do? I have had ic for 10 years or so, and do not take any medication for it. I find if I just eat bland foods and stay away from things I should not eat, I keep my pain to a minimum. That is not to say I dont try sometimes to eat something I shouldnt, but it isnt worth it.”

A: The safest way is to focus on those veggies that are high in Vitamin C like green bell peppers, potatoes and green leafy veggies (spinach, lettuce, cabbage). You can also try taking a low acid Ester C… which seems to be much easier for some, but not all, IC patients to tolerate. Lastly, I’m not sure if they offer a low acid orange juice in South Africa. They do here in the states. You could try that… provided that you dilute it substantially.

Don’t forget, though, that using therapies that can help calm the bladder and reduce inflammation might help your bladder improve even more. The use of an antihistamine (aka hydroxyzine) helps control histamine induced inflammation. An antidepressant, such as Amitryptiline, helps control neuroinflammation. There are also protective coatings, such as Elmiron and rescue instillations, that are worth talking with your care provider about. Don’t overlook, as well, some of the OTC supplements, such as CystaQ, Cystoprotek, Bladder Q or Desert Harvest Aloe, are currently available.

Recently, a newly diagnosed IC patient contacted the ICN stating that she had stopped eating all solid foods because she was afraid that she would irritate her bladder. She was also very confused by the different lists of “good” and “bad” foods that she had found. She didn’t know what to eat and was barely existing on rice, milk and water.

It’s very common for newly diagnosed patients to be confused about diet but, with some basic education, you’ll find that there are many foods that are IC friendly. Remember that some lists floating around the web are just very old and outdated while others may have been put together by patients who are just “guessing” about IC friendly foods. If you have a list that says eggs are bad! Throw it away. It’s an old list. Egg whites are natural acid reducers.

Please do not take lists of “bad” foods literally. The IC diet is very INDIVIDUAL and what one patient may find irritating, another patient may be able to tolerate in small (or large) amounts. It will take some time to find your bladder friendly foods. Here are some basic, simple tips that might be helpful. At the end of this article, we include references to more information and recipes.

If you’re struggling with diet, try thinking of your bladder as having little wounds and/or inflammation in it. Your job is to avoid those foods that would irritate those wounds, such as acids, alcohols and heavy salts. The most common IC irritants are coffee (even decaf), tea, herbal teas, sodas, diet sodas and fruit juices (cranberry, orange, lemonade, etc.) You would not pour acid on a wound on your hand, so why would you pour acid on a tender, wounded bladder. Worse, if you poured acid on the same wound every day, it would become more inflamed, irritated and painful. Therefore, the great majority of IC patients find relief from some their symptoms and can prevent the onset of future diet induced flares.

So, what can you eat? Focus on a whole, fresh natural diet rather than fast, pre-manufactured foods that often have dozens of chemicals that can irritate the bladder. Fresh grilled meats (chicken, beef, fish, pork) are IC standards, though you’ll want to avoid BBQ sauce, ketchup and steak sauce. Preserved meats and “stove top” packaged or frozen meals may be more of a problem because they have extra preservatives and salts. Vegetables, in general, are quite IC friendly with the exception of tomatoes (acidic) and, for some, asparagus. So, a fresh bowl of green beans, sweet potatoes, baked potatoes, can be hearty and very filling. Salads (lettuce, carrots, celery, sprouts, etc.) are also quite friendly though salad dressing can be a challenge. Many patients enjoy using flavored “olive oils” as an IC safe salad dressing.

Breads are usually IC friendly. But, some of us have irritable bowel syndrome that may be irritated by some grains. In my case, I can’t eat oats without having intense intestinal cramping because I’m allergic to oats. I’ve found one brand (Food For Life – Ezekial Flourless Breads) that is bladder and bowel friendly for my tender system. They offer low salt wheat, cinnamon raisin and sesame breads, with excellent protein, roughage and a low glycemic index score. This brand comes frozen and can be found in many specialty food stores.

Fruits are the hardest and most confusing part of the IC diet, especially for patients who are juicers. The most acidic fruits are oranges, grapefruit, lemons, limes, cranberry and even strawberries. But, many patients report that pears are very IC friendly. Some patients can tolerate melons (honeydew, watermelon, etc). Still others find that mild apples (like Gala apples) are IC friendly. In my case, I love tropical fruits and they rarely bother my bladder, especially mango and papaya. I can even drink a small amount of pineapple juice. But, I can’t drink apple juice at all. Go figure! It will take time, patience and testing for you to find fruits that are good for you.

Multi-vitamins are often a frequent source of irritation for patients. Vitamin C complexes can be extremely acidic. An Ester-C may be more tolerable, but even that can be too strong for some patients. B-6 and magnesium can also irritate the bladder. As Bev Laumann reports in Taste of the Good Life, “Another interesting phenomenon is that although some vitamin supplements cause IC symptom flares, the same amount of those vitamins when found in food appear not to have the effect.” So, following our theme of a natural diet can easily give you the necessary amounts of vitamins. Broccoli, for example, is an excellent source of vitamin C.

Most patients use an elimination diet to find the foods that irritate their bladders. You can learn more about this in the ICN Patient Handbook. However you choose to proceed, remember that quantity may be an issue. Start with a small amount of a risk food (testing only one food a day) and complete a voiding diary. If your pain, frequency or urgency got worse, then that food should stay on your bad list. But, if you feel good the next day, you can probably add SMALL amounts of that food to your diet. Don’t forget that Prelief is now available and can help reduce the acids in food as well! Always remember that your goal is to help reduce the inflammation in your bladder. More information on the IC diet can be found:

Three Printed Resources -
A Taste of the Good Life – A Cookbook for an IC Diet by Bev Laumann
Confident Choices: Customizing the IC Diet by Julie Beyer RD
The ICN Special Report on Diet
Avalable at: http://www.icnshop.com

More web information -
The IC Patient Handbook Diet Guide
Fresh Tastes by Bev Laumann - feature columns on diet and IC
The IC Chef On-Line Cookbook - recipes submitted by patients

When your an interstitial cystitis patient struggling with pain, it’s often hard to find help. Luckily, in the past few months, four new resources have been created which we feel will dramatically help you control and reduce your IC pain. These are now available in the ICN Shop at: http://www.icnshop.com. We’re excited to share these with you!

(1) Hot off the press! ICN Special Report: Pain
New for Winter 2007 is the ICN Special Report: PAIN which is a guide to managing IC, Bladder & Pelvic Pain. As with all of our materials, we want you to be able to open it up and, within just a few minutes, find some new ideas or strategies that can help you better manage your IC and, in this case, specifically pain. It’s our best special report today and includes an extensive discussion on the sources of IC pain, pain care strategies that, if used each day, can dramatically improve symptoms and an extensive discussion of pain care treatments.

The Report also includes an interview with Dr. Dan Brookoff, the nations leading IC pain specialist. This is a must read for patients struggling with bladder pain and/or discomfort.

Available by Email: http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=ICN_Email_Resources.html

Or in Print: http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=ICN_Printed_Resources.html

(2) Overcoming Pain - What It is, Why It Is and Successful Ways to Treat It.
Authors: Alan Platt, Jr. PAC, Susan Platt, MD & Cathy Hedtrich, RPT

Endorsed by the American Pain Foundation

This book is the ideal companion to our Special Report on Pain and provides more in-depth information on various pain medications, including dosages commonly used. This book will help you discuss pain care & how treatments can be used with your physicians. It sits on my desk as a reference tool but is VERY easy to read and provides one of the most comprehensive and informative discussions of pain. I recommend it highly!

Shop Link: http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Books-PainCare.html

(3) Guided Imagery For Relaxation in Women with Pelvic Pain or Interstitial Cystitis

When a research study proved that patients using this CD twice a day had an improvement in their pain & bladder symptoms, we took notice! It was created by a Nurse Practitioner working with women with IC and pelvic pain at William Beaumont Hospital (Michigan). $15.00

Shop Link: http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Audiotapes_CDs.html

(4) A Headache in the Pelvis, 4th Ed - A New Understanding And Treatment For Prostatitis and Chronic Pelvic Pain Syndromes!
Newly Released FOURTH EDITION

HIP is THE book to have for patients struggling with pelvic floor dysfunction. It describes, in depth, the groundbreaking pelvic pain program developed at Stanford University. - Paperback $29.95

Shop Link: http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Books-ICandOAB.html

Order your copies today at: www.icnshop.com or by calling our mail order center at 707-433-0413

Did you know 70% of China’s rivers and lakes are polluted? or that 360 million people lack access to safe drinking water?

The topic of articles in print, as well as documentaries on TV (NOVA, Frontline, etc.), the water and air pollution crisis in China is so profound that rivers run black from industrial waste and untreated sewage. Think about it. These are the very waters that may be used to water the crops (i.e. wheat) that we, in the USA, are buying in vast quantities for consumables. How did melamine appear in wheat germ? It could have been an environmental toxin.

Thus, and honestly, I have to wonder what the true quality of the consumable goods that we are importing to the USA is? What type of testing is being done to verify that they are safe and free of toxins? IS any outside testing done? Are we to believe the claims of the manufacturer that a product is safe? are lives at stake??

Some friends of mine had a three week trip to China last fall and they were appalled at what they saw. Crops covered with a grey dust. Massive pollution. Sewers that weren’t vented to the outside in hotels but allowed to pass sewer gases back up shower drains and into hotel rooms… yes, first class hotel rooms. Most of the vacationers on their tour became severely ill with a gastrointestinal bug with massive diarrhea and vomiting. Doesn’t sound good to me.

Worse, the air pollution from China’s massive industrial growth is now being felt around the world including North America and Canada where air testing continues track an dramatic increase in pollutants.

I, for one, now refuse to purchase any foods and consumables from China until we have a method of verifying that they aren’t also contaminated with industrial waste products, sewage and, not surprisingly, melamine. You couldn’t pay me to eat even candy made in China. The real problem though is how do we know where the product has come from??? Shouldn’t we have some labelling regulations that provide disclose international sources of consumables?

Try googling for China water pollution. You’ll be amazed the articles that come up. It’s a tragedy in the making, fueled by economic growth and GREED!

I guess we, in the USA who shop at the cheap warehouse discount stores, are a big part of the problem. We want it cheap, regardless of the source. We don’t seem to be willing to pay for products that are slightly more expensive if made in the USA. Is that cheaper good potentially contaminated?? Is the USA’s desire for cheap products contributing to the worst ecological disaster in the world??? I fear the answer is yes!

So, I urge you to look at the labels of the products that you are buying. If it says “Made in China”… look for another product that is made in the USA. Support American jobs and products. Buy at small mom & pop stores, rather than big chains. Ask for American made products. At this rate, I doubt we could even build a house in the USA using American made builidng materials. How tragic is that?

Jill O.

It’s amazing when you get news from various “blogs” about postings related to IC. 75% of them are fake advertising but there are a few support groups online that really do have great discussions about IC. I’d like to find them all so that we can list them on this blog and on the ICN website. So, if you participate in a blog on IC, please send me the URL so that we can tell others about it!

Here is one that I definitely think is worth checking in to!

http://community.livejournal.com/i_cystitis/

This is a lovely support community of younger patients. Great questions and answers, give and take, and support.

Patients in Southern California!!! The ICA is holding their second regional conference for 2007 featuring one of my favorite IC clinicians, Robert Moldwin, author of The IC Survival Guide. He’s always a joy to hear and his compassion for IC patients, as well as knowledge of IC reseach, is truly inspiring. This is an event worth attending!

DATE: Friday, April 20, 2007

TIME: 1:00 to 5:00 pm
(Registration from 12 noon to 1 pm)

LOCATION: Millennium Biltmore Hotel
506 South Grand Avenue, Los Angeles

This Program will include:
(1) Detailed presentation on the possible causes of IC, treatments, self-help measures, and the latest research developments from one of the premier IC clinicians in the US.
(2) Question & answer session
(3) Opportunities to meet and network with other IC patients
(4) IC-friendly refreshments

Registration fee: only $25.00 per person. Space is limited. We cannot guarantee that seats will be available at the door. Please call 1-800-HELP- ICA to register.

Registration Deadline: April 18th.

For hotel reservations, please call 1-800-245-8673.

I was talking the other day with Bev Laumann, author of A Taste of the Good Life: A Cookbook for an IC Diet, and we were both so frustrated that the managers of the various IC clinical trials out there do not discourage their participants from drinking coffee or other risk foods. I mean, honestly, it would be difficult if not impossible for any therapy to counteract the daily harmful acid irritation that coffees and sodas induce. Isn’t it far more likely that a therapy would work IF that bladder wasn’t having a daily acid wash???

Similarly, who the heck put “eggs” on several of the IC diet lists floating around the medical world?? Egg whites have natural acid reducing properties and I have never EVER talked with a patient who had a flare from eggs. My suggestion? If you have a diet list that says eggs are bad, it’s probably outdated. Print out a more current list at: http://www.ic-network.com/handbook/diet.html

Just food for thought, eh???

Jill

FDA Public Health Advisory
Tegaserod maleate (marketed as Zelnorm)

FDA is issuing this public health advisory to inform patients and health care professionals that the sponsor of Zelnorm (tegaserod maleate), Novartis Pharmaceuticals Corporation, has agreed to stop selling Zelnorm. Zelnorm is being taken off the market because a new safety analysis has found a higher chance of heart attack, stroke, and worsening heart chest pain that can become a heart attack in patients treated with Zelnorm compared to those treated with a sugar pill they thought was Zelnorm.

FDA announces the following, effective immediately:

– At FDA’s request, Novartis Pharmaceuticals Corporation has agreed to stop selling Zelnorm.
Patients being treated with Zelnorm should contact their physician to discuss alternative treatments for their condition.

– Patients who are taking Zelnorm should seek emergency medical care right away if they experience severe chest pain, shortness of breath, dizziness, sudden onset of weakness or difficulty walking or talking or other symptoms of a heart attack or stroke.

– Physicians who prescribe Zelnorm should work with their patients and transition them to other therapies as appropriate to their symptoms and need.

Zelnorm is a prescription medication approved for short term treatment of women with irritable bowel syndrome with constipation and for patients younger than 65 years with chronic constipation. In late February and early March 2007, Novartis Pharmaceuticals gave FDA the results of new analyses of 29 clinical studies of Zelnorm for treatment of a variety of gastrointestinal tract conditions; the data from all the studies were combined to assess the chance of side effects on the heart and blood vessels. In each study, patients were assigned at random to either Zelnorm or a sugar pill they thought was Zelnorm. These 29 studies included 11,614 patients treated with Zelnorm and 7,031 treated with a sugar pill. The average age of patients in these studies was 43 years and most patients—88%–were women.

The number of patients who suffered a heart attack, stroke or severe heart chest pain that can turn into a heart attack was small. However, patients treated with Zelnorm had a higher chance of having any of these serious and life-threatening side effects than did those who were treated with a sugar pill. Thirteen patients treated with Zelnorm (0.1%) had serious and life-threatening cardiovascular side effects; among these, four patients had a heart attack (one died), six had a type of severe heart chest pain which can quickly turn into a heart attack, and three had a stroke. Among the patients taking the sugar pill, only one (or 0.01%) had symptoms suggesting the beginning of a stroke that went away without complication.

There may be patients for whom no other treatment options are available and in whom the benefits of Zelnorm treatment outweigh the chance of serious side effects. FDA will work with Novartis to allow access to Zelnorm for those patients through a special program.

FDA has also indicated to Novartis a willingness to consider limited re-introduction of Zelnorm at a later date if a population of patients can be identified in whom the benefits of the drug outweigh the risks. However, before FDA makes a decision about limited re-introduction, any proposed plan would be discussed at a public advisory committee meeting.

Source: FDA Medwatch