Interstitial Cystitis Network Newsletter

This Week on the ICN! April 10, 2015

Sponsored by: Imprimis Pharma, Beaumont Urology - CystaQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - PainShieldMD

Quick Links: Join the ICN - 24/7 ICN Support Forum - Find A Specialist - Donate Now


New IC Cookbook Released

IC Chef CookbookWe are proud to announce that our latest publication, the IC Chef Cookbook, is now available. The book is appropriate for patients struggling with bladder and prostate disorders as well as acid sensitivity. It features more than 260 recipes submitted by IC patients over the past ten years to our on-line cookbook.

Julie Beyer RD, author of the Confident Choices: A Cookbook for IC and OAB, contributed the foreward to the book. She wrote "For the past twenty years, Jill Osborne and the thousands of members of the Interstitial Cystitis Network Forum have shared their journeys with interstitial cystitis, including the recipes you find in this book. This cookbook is a celebration of that wisdom and, more, importantly the empowerment that patients experience when collaborating with each other."

If you think there are no hot beverages that you can enjoy, you'll be intrigued by the more than 20 recipes for hot drinks included in the cookbook and, with the warm season approaching, you'll also find recipes for frozen shakes and creamy drinks, sweet teas, smoothies and veggie drinks. If you're sick of oatmeal for breakfast, you'll find some fabulous new recipes perfect for a family brunch. From burgers to pizza, pasta to vegetarian ideas, there are plenty of options that should help you enjoy food again. (See Table of Contents and Recipe List Here).

The book is also a primer on the IC diet as well with easy to read sections explaining why food can irritate the bladder, the most irritating foods to avoid. It includes a full list of the 2012 IC Food List along with articles on Fighting Constipation, Fatigue Fighting Foods, Foods and Chemicals and more. We hope that it gives you some great new ideas and fresh flavors to play with.

How to Buy It

 

Success Story - Treating IC and Pelvic Pain With Acupuncture

(Loyola University Health System) At age 12, Rachael Fellers developed a debilitating form of pelvic pain that at times prevented her from standing, walking or going to the bathroom. Mrs. Fellers saw several doctors who determined that she had endometriosis. They unsuccessfully tried to alleviate her pain through medication and surgery.

Despite her discomfort, Mrs. Fellers hoped to become a mom. She soon became pregnant and gave birth to two children only to be diagnosed later with interstitial cystitis or painful bladder syndrome after undergoing a hysterectomy for the endometriosis. The painful bladder syndrome resulted in burning and labor-like cramping pain. This left her depressed, anxious bedridden on many days and unable to work or take care of her kids.

"I was desperate and unable to leave the house or enjoy my life as a mom and a wife," Mrs. Fellers said. "I didn't want my kids to see me in pain, so I began researching alternative methods to manage my condition."

Mrs. Feller's research led her to Loyola University Health System. The organization helped Loyola urologist and medical acupuncture doctor Larissa Bresler, MD, open an acupuncture clinic for men and women with pelvic health disorders in the fall. The clinic uses acupuncture to treat patients with common conditions such as pelvic pain, nausea from pelvic surgery, interstitial cystitis, painful bladder syndrome, post-surgical pain, prostatitis and overactive bladder.

"The treatment has improved my anxiety, related headaches, energy and overall mood, and I no longer require pain killers or other medication," Mrs. Fellers said. "Acupuncture has been life-changing. It has saved my marriage and has allowed me to enjoy being a mom again."

Read the full story here!

 

Hot Conversations in the ICN Support Forum - What patients are talking about!

Pregnant IC'er Needs Help

ICN member Karabie is 20 weeks pregnant with her first child and struggling with severe urgency. She does not have pain or frequency. Just the urgency. She's feeling very frustrated and is seeking information from other patients who have had their symptoms increase during a pregnancy. Also, she's seeking post pregnancy stories too. Please give her some encouragement here!

Is Zumba Safe for IC Patients?

If you have IC and are considering trying the Zumba exercise program, you must read this discussion sharing experiences from patients who have had their symptoms worsen, in some cases, dramatically. ICN member Lauraads shares "If you are not seing a pelvic floor therapist while doing Zumba, you are endangering yourself. A YEAR after my zumba-related injury, I am still in horrible pain and cannot sit down at all." Read more here!

Urethral Diverticulum

A new member of the ICN shares an unusual story. She's had severe urethral pain for eight years, the result of a recurring urethral diverticulum AND multiple repair surgeries. She's looking for other patients who have also struggled with UD, as well as pudendal nerve entrapment. She's looking for a 3rd or 4th opinion after her latest surgery last month appears to have failed. If you can relate and/or have suggestions, please read her story and share your thoughts here!

Hydroxyzine HCL Causing Side Effects? Bleeding?

ICN member Bladderella shares a very interesting experiene she's had with bladder pain and some bleeding. With additional thought, she realized that her increase in symptoms corresponded with changes in the manufacturer of her hydroxyzine prescription. The new medication contained some dyes which she thinks could be contributing to her greater discomfort. Has anyone else noticed this?? Read more and participate in the discussion here!

Struggling To Find Bladder Friendly Foods

ICN member Colesmom is looking for suggestions from other patients who find that their bladders react to almost every food. Have you been there?? Please share your thoughts and words of wisdom with her here!

IC Only Found in Bottom Half of the Bladder

ICN member Caspar3985 shares that her hydrodistention had an unusual result. Her irritation was only along the bottom half of the bladder and in her urethra. Anyone else experience this?? Read more and give her your feedback here!

 

Social Security Releases Updated Ruling on IC Effective March 18, 2015

Social Security Updates IC Ruling The Social Security Administration has published a NEW Social Security Ruling (SSR) in the Federal Register on March 18, 2015, for evaluating interstitial cystitis (IC) in adults and children. It takes effect immediately.

The ruling makes for fascinating reading and we strongly suggest that every current applicant, those currently appealing denials or patients considering making an application read the ruling in its entirety. It only 3 pages long and offers a LOT of clues about the types of information SSA expects and needs to approve disability benefits.

For example, the new ruling shares they will look at the previous 12 months of medical records prior to the application. They want longitudinal data on how IC has presented itself, what symptoms the patient is having, how the diagnosis was made, what treatments were tried and, of course, how that diagnosis and symptoms are now interfering with you ability to work.

Take special note here! One of the most important things that you should do at EVERY SINGLE DOCTORS APPOINTMENT is provide them a voiding and pain diary for your medical file. This provides compelling data to support your claim. It will show your symptoms and pain levels over time, your progress or lack of progress with treatments. It adds more objective data for symptoms which many judges have felt were too subjective. It's powerful evidence that has helped other patients successfully appeal claim denials.

We'll be doing an in-depth review of these changes in the Spring 2015 issue of the IC Optimist magazine, coming in April! You can review the Ruling online at: http://www.gpo.gov/fdsys/pkg/FR-2015-03-18/pdf/2015-05680.pdf

 

The Latest Research

Researchers Urge Focus on Reducing and Preventing IC Flares

Here's an interesting study that, yet again, supports what patients have been saying for years. In a qualitative study, researchers conducted four focus groups of IC patients to learn more about flares and how they influence our lives. The results weren't surprising. Flares are unpredictable and impact our quality of life. Flares disrupt our social lives and make work far more challenging. Flares trigger more emergency room visits and, for some, requests for disability leave. This St. Louis based research team suggests that more research should focus on preventing flares and reducing their intensity and duration. Learn more!

Hunner's Lesions Correlate with Vesicoureteral Reflux

Researchers in Korea suggest that Hunner's lesions could lead to the development of vesicoureteral reflux, the backward movement of urine up the ureters towards the kidneys. Reflux can increase the risk of bladder infection and kidney damage. In a small study of 25 IC patients who underwent a voiding cystogram, seven (28%) had reflux of urine up into the ureters. These patients also had proximal Hunner's lesions. Learn More

Mesenchymal Stem Cell Therapy Alleviates Interstitial Cystitis

Researchers in Korea have shared a new study on the use of stem cells in the treatment of IC, this time using stem cells derived from human umbilical cord blood. They found that treatment with stem cells prevented the denudation of the epithelium, mast cell infiltration, inflammation, neurofilament production, and angiogenesis. Based on these results, they suggest that clinical trials should be conducted. Learn more

Japanese Urologists Find Most Physicians Lacking in IC Care

Japanese researchers studied 82 patients and found that those patients who did not experience bladder pain and/or patients with Hunner's lesions had more difficulty receiving a correct diagnosis and treatment due to the lack of provider education. They urged urologists to remember that the Japanese definition of IC as a "hypersensitive bladder syndrome" also includes patients with just frequency and urgency. They also urged better education about the identification and treatment of Hunner's lesions, as well as the use of diet modification and some behavioral modification. Read more

Other Studies

 

Self-Help Tip - Considering Coffee Again? Take the Coffee Challenge

For newly diagnosed patients struggling with bladder or prostate symptoms, finding a hot drink that won't cause more symptoms can be challenging. Why?? Foods high in acid (i.e. green tea, black tea, coffees) create irritation in much the same way that acid poured on a wound on your hand would feel. Caffeine acts as a diuretic, stimulating more frequent urination and also causes urine to become more concentrated with urea and ammonia.

So, what can you drink? Here's a six step hot drink challenge that we suggest to every patient. Start at Step One and slowly work your way down. If any of these trigger your symptoms, then stop and go back up a step. If, though, your bladder tolerates one well, then proceed to the next one and give it a try. Please note, however, that whenever you're struggling with active symptoms, it's best to keep your hot drinks mild and simple! (i.e. one through three)

Read more here!

 

Newly Diagnosed Coaching

Designed for newly diagnosed patients, the ICN offers personal coaching for patients struggling with interstitial cystitis, chronic pelvic pain and its related conditions. You'll receive the best books on IC, as well as the opportunity to speak, in depth, with to most experienced IC coach in the country, ICN President Jill Osborne. She'll offer insight on current diagnostic methods and the six step treatment protocol provided by the AUA. She'll help you prepare for your physician appointments and track your treatments. She'll also help you learn how to prevent and/or manage IC flares.

This coaching package includes:

  • Book - The Proactive Patient (or) Heal Pelvic Pain (TBD during 1st coaching)
  • ICN Guide to Managing IC Flares
  • ICN Guide to the IC Diet
  • One 60 minute coaching session at the beginning of the coaching period
  • Three follow up 15 minute sessions to take your questions, help you prepare for appointments, discuss therapies, manage flares, diet questions and so forth.

Learn more here!

 

Interesting Blogs, Articles & Videos

 

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

 

 

If you have a medical care provider who has helped you, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form.  We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.

Click here to search the ICN Find A Specialist database

Click here to recommend a medical care provider

 

Recipe of the Month

Submitted by ICN Member Carole

Melt In Your Mouth Buttermilk Pancakes

Ingredients

1 teaspoon salt

2 teaspoons baking powder

1 teaspoon baking soda

2 cups of sifted flour

2 tablespoons sugar

2 eggs, slightly whisked

2 cups of buttermilk(if can tolerate)

2 tablespoons butter, unsalted and melted

 

Instructions
1. Preheat a griddle to medium heat.
2. In a medium bowl, whisk together the salt, baking powder, baking soda, flour and sugar. In a
separate bowl, whisk together the eggs and buttermilk. Drizzle in the butter as you continue to
whisk.
3. Switch to a wooden spoon and make a well in the middle of the dry ingredients. Pour in the wet
ingredients and stir until almost completely combined. Please remember, the more you stir
pancakes the more flat and tough they will be so please mix until a few streaks of flour are
remaining.
4. Butter the griddle and scoop 1/3 cup of batter and cook until bubbles begin to form, flip and
cook until golden. Serve immediately.

 

April Awareness Months

IBS Awareness MonthIBS Awareness Month

One of the most common related conditions to interstitial cystitis, irritable bowel syndrome is a bowel disorder commonly associated with chronic constipation, diarrhea or variations of both. Information is power. If you struggle with IBS, take a moment and read through of some these materials.

 

April is Sjogren's Syndrome Awareness Month

Sjogren's is a rare related condition to IC, characterized by chronic dry eye, dry mouth, fatigue and joint pain. It is a systemic autoimmune disease that can affect the entire body.. An estimated 4 million Americans struggle with Sjogren's. Learn more about Sjogren's here!

 

 

What's New In the ICN Shop!

www.icnsales.com - 800.928.7496 or 707.433.0413

Introducing The GingerBee Pelvic Heating Pad

GingerBee Pelvic Heating PadIntroducing the new GingerBee microwaveable pelvic heating pad. With a triangular shape, it fits comfortably over the pelvis yet isn't too heavy to be uncomfortable. It offers penetrating heat to relieve bladder pain, pelvic pain, muscle tension and stress. This is a must have for everyone.

We first came across the GingerBee line of products at a local holiday craft faire here in Northern California. This small, woman owned business in Northern California creates a variety of heating pads for the neck, back and legs. We bought their trapezius neck pad as a trial and, wow, it works perfectly for the pelvis so we're now calling it our pelvic heating pad! Made of flannel and uses rice as a filler. Unscented!

Made in the USA with 100% cotton flannel.

Color: Lavender

Approximate size: 12″ x 33″

Learn more here!

Stash Herbal Teas

Over the years, we've tried a lot of different brands of herbal tea and we've found a new favorite, STASH Herbal Teas. From their mild chamomile blends to the rich and very popular rooibos teas, these are ideal for IC patients who crave something warm yet just can't tolerate coffee products. Just $4.99.

 

Stash Chamomile Chamomile Nights Cascade Mint Cinnamon Vanilla Maple Apple Cider

 

OTC Neutraceuticals (Step One IC Interventions)

Prelief

CystoProtek

Cysta Renew

CystaQ

Desert Harvest Aloe

 

Essential Reading Materials

Winter 2015 IC Optimist

IC Optimist

The Proactive Patient

Books on IC

Books on Pelvic Pain

Books on PFD

Books on Family