Interstitial Cystitis Network Newsletter

This Week on the ICN! July 4, 2014

Sponsored by: CystaQ - Parson's IC Solution - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - Squatty Potty - PainShieldMD

Quick Links: Join the ICN - 24/7 ICN Support Forum - Find A Specialist - Living with IC Videos


Blogs, News & Announcements

IC & Independence Day - Get Out and Celebrate

(For Our USA Readers) Many interstitial cystitis patients dread holidays, such as Independence Day. The joyful family picnic or nighttime firework display lose their appeal when you're struggling with a sensitive bladder, need restroom access and would like to eat something that won't trigger an IC flare. Yes, we have a bladder disorder. Yes, it gives us plenty of discomfort at times. But, yes, we also deserve to be a part of the celebration. Don't let IC isolate you. You have the right to participate as fully as you would like. I encourage you to enjoy the day!

Embrace Your "independence"

There is no reason for you to shy away from important family and community events. There is no shame in having a pelvic pain disorder. I want you to walk in, with your head held high. You have done nothing wrong. You didn't ask for IC. Your place in your community has not changed and, in fact, many would argue that you would more welcome and are deserving of their support and encouragement.

Read the full article here!


The Interstitial Cystitis Diet Simplified

The IC Diet is a very healthy, simple, natural diet. If you're addicted to junk food, this is going to be a big change. Rather than buying pre-made foods, we suggest making homemade meals so that you know exactly what the ingredients are. No one can tell you exactly what you'll be able to eat because patients often have different food tolerances. So, take it slowly, keep your diet simple and, when possible, organic. Start with small quantities of riskier foods, when possible.

Meats & Proteins

You can have almost any fresh (obviously cooked) meat or fish that you want but be careful with the spices and sauces used. BBQ sauce, steak sauce and cajun spice rubs, for example, can be very irritating.

Want a steak?? Instead of ketchup, sauté some mushrooms in butter to use on top. Chicken is a popular favorite with IC patients. Fried chicken, without hot spices, is a popular favorite! Be wary of spicy preserved meats, particularly pepperoni and salami.

Eggs and egg whites are an excellent source of protein. Surprisingly, early IC food lists suggested that eggs were irritating but new lists and studies have designated eggs as IC friendly. Egg white based protein powders (i.e. dried egg whites – Just Whites) are much better than soy powder products.

Click here to read the rest of the article!


New Clinical Trials

Study Seeks Women With Moderate to Severe Bladder Pain

The Interstitial Cystitis Network is pleased to inform you that a research study is now enrolling women between the ages of 18 and 75 who have IC/BPS. This study will assess the effectiveness of an oral investigational study medicine (AQX-1125) to see if it will reduce the moderate to severe IC/BPS pain being experienced by study participants. Click here to learn more about it!


IC Chats & Conversations in the ICN Support Forum

"Doctors keep giving me different excuses but nothing is helping"

ICN member Lisa is new and shares that her bladder pain started last year, just three days before her period. She's having terrible menstrual flares with a lot of spasming and pain referred to her back and legs. She's 24 and looking for other patients who have experience with different birth control products and menstrual flares Read her message here!

"Hydrodistention Recovery"

New ICN member bWinslow had a major hydrodistention procedure that involved fulguration of polyps. She's wondering if other patients have had a very difficult recovery and what they did to help! Read it here!

"Where is your pain located?"

New ICN member LadyMoonbeam asks where other patients experience pain during a flare. She says that she hurts most on her right side and in her right flank up and down her back. Do you have pain on one side or the other? If yes, what do you think is triggering it?Read it here!

"PTNS Complication - Anyone else experience dizziness?"

ICN member PGGBD shares a very unusual reaction to PTNS. After six procedures, she developed dizzness, pressure in her head and heart palpitations. The symptoms have not abated. Has anyone else struggled with PTNS adverse events? PTNS is considered the safest form of neuromodulationw with only two reported adverse events in the FDA database. Read it here!

"Looking for favorite breads!"

ICN member Stephie7400 is looking for suggestions about breads. Do you have a brand that works for you? Any brand recommendations for patients who are gluten sensitive?. Read it here!


Squatty Potty - Made in the USA with Pride

We at the ICN love our Squatty Potty's®. It's is a carefully designed toilet stool that puts YOU in exactly the correct position for fast, easy elimination, and keeps ITSELF out of the way when not in use.

Humans have squatted for millennia - until the advent of the modern toilet. The problem with that is that when you sit on the toilet, the puborectalis muscle only partially relaxes. This keeps the colon kinked and blocks the flow of waste.

Squatty potty helps the puborectalis muscle fully relax, allowing the colon to empty quickly and completely.

If you've struggled with bowel movements, this simple, easy stool might be worth a try. It's very affordable, comes in several designs and takes you back to the way nature intended us to use the restroom. Read more about it here!


Squatty Potty


The ICN Mail Order Center -

800.928.7496 or 707.433.0413

AZO UTI Test Strips & Urinary Pain Relief Tablets

We've finally found a new distributor for the AZO product line and should have both the UTI test strips and pain tablets in next week. Yay! The distributor network went through some big changes at the start of this year so we're delighted that we can finally offer it for sale again. UTI Test Strips help patients distinguish between IC flares and possible bladder infections. The AZO Urinary Pain Relief tablets are the OTC version of pyridium and help to reduce discomfort by numbing the bladder wall!

ALERT! Shipping Summer Months During Summer Months

CystoProtek - Cysto Renew - Desert Harvest Aloe - CystaQ

If you rely on supplements to help reduce your bladder discomfort, take note that they are very difficult to ship during the summer months due to heat damage. If you're in the USA, we strongly encourage you to buy enough NOW to get you through July and August!

Find these products & more in the ICN Mail Order Center!