IC Optimist - Winter 2019 - Print
It is undeniable. A one treatment fits all approach to treating IC simply does not work. Elmiron is not the miracle drug it was once thought to be. Bladder instillations have been marginally successful for some, but not all, patients. Why? There is tremendous diversity in the IC patient population. For some patients, symptoms begin in childhood while for others it begins after menopause. Some IC’ers have bladders covered with lesions while others have normal, healthy bladders. Some patients’ symptoms begin after chemotherapy while, for others, a UTI or Lyme Disease may be the trigger. Many patients have pelvic floor muscle dysfunction while others might have pudendal neuralgia. Clearly, these are different presentations of bladder pain and each require a different and customized approach to treatment. In this issue of the IC Optimist, we emphasize some of the lesser known variants in IC.
In this issue:
#1 - Editorial - LiRIS Deprioritization
Heartbreaking news for patients awaiting the first treatment in history to heal Hunner's lesions.
#2 - Feature Story - Fibroids and the Bladder
For women with IC symptoms unresponsive to treatment who also have painful periods, fibroid tumors pressing on the bladder may be the cause. Researchers have proven that having fibroids removed can “cure” many patients of their bladder symptoms. We share the latest information on why fibroids occur, their relationship to the bladder and how their many potential treatment options.
#3 - Feature Story - What Causes Interstitial Cystitis
We are delighted to feature an article by Suzanne Weiss who shares the story of ten patients, each diagnosed with IC, who found relief in very different ways. From candida to gut dysbiosis, these patient stories may gave you new ideas to explore on your journey towards healing.
#4 - Consumer Alert - The Dangers of Cipro & Levaquin - Have you been floxed?
In an important consumer alert, we share yet another warning about the use of Cipro, Levaquin and other fluoroquinolone antibiotics. Tens of thousands have taken this medication without any understanding of their risks, including: central nervous system damage, aortic aneurysm, tendon rupture and more. The FDA says that fluoroquinolones should no longer be used for simple urinary tract infections because their risk far outweighs their potential benefits.
#5 - The Latest Research - Hyperbaric Oxygen Therapy
Hunner's lesion patients have another new treatment option to consider: hyperbaric oxygen therapy. Now available across the USA, six studies have now shown that intense oxygen therapy has dramatically improved lesions as well as other medical conditions. We share the latest research on its use, what you can expect if you try it and, of course, the risks.
#6 - IC Friendly Cold & Flu Strategies
It’s been a wicked cold and flu season. We asked 100 patients to share their favorite bladder friendly tips and strategies for sore throat, cough, congestion with the hope that you might find more options to try. Honey products were, by far, the most popular among patients for their soothing effect with minimal risk of bladder irritation.
#7 - 8 Tips For Staying Connected With Others
Perhaps the greatest personal challenge facing patients is how to stay involved with family and friends when you need to stay close to a restroom and/or need to stay at home. Stacey Shannon shares some tips to help you stay connected with those who matter in your life.
#8 - IC Diet Tip - Fit More Fiber Into Your Diet
What do you do when the medications you take cause constipation that, unfortunately, also can make IC symptoms ore uncomfortable? Fiber is your friend yet many IC'ers often eat so little fiber that they have a double whammy of bowel dysfunction. We share why fiber is so important, how to find fibers that don't irritate the bowel and bladder (i.e. think soluble fiber) and a list of the many foods that can help.
#9 - Patient Stories
We share two patient stories. One, a 68 year old gentleman with IC, who shared his remarkable success using CBD oil. The other is from a woman who despite trying every bladder treatment, never seemed to get better but she had a hunch. She wondered if she had a pudendal nerve entrapment. Eventually, they were able to determine that her sacrum was not in the correct position and triggering her discomfort. With intense chiropractic care, she is dramatically improved and even recently had a baby!
#10 - Self-help Tip of the Month - How I Maintain My Focus
If you've ever spoken with Jill on the phone, you've probably noticed that she is not only optimistic but remarkably positive. She shares how she does it! Using some simply daily affirmations, even the hardest challenges, can be faced with dignity
Publisher: Interstitial Cystitis Network