The Proactive Patient offers a comprehensive understanding of Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) and the often occurring overlapping conditions. Patients will find an assortment of treatments, both traditional and alternative, as well as the right tools and resources to improve their quality of life. This detailed book will be helpful to partners, families, friends, co-workers, bosses, and even doctors, nurses, naturopaths, and many other healthcare practitioners, who need a better understanding of IC/BPS and the related illnesses.
"The Proactive Patient was superbly written! This book is the IC 'bible' for the newly diagnosed as well as the educated patient advocating for quality of life. There isn't another IC book written by an IC patient that has such comprehensive, patient friendly information. Educating the patient, sharing valuable information such as - IC and overlapping conditions - chemical sensitivities - helpful IC diet tips and gentle stretching exercises to achieve total body comfort. A must read for all who want to achieve a full life in spite of having this chronic condition!" Molly Hanna Glidden, former leader of the Boston MetroWest Interstitial Cystitis Support Group
"I was diagnosed with Interstitial Cystitis and other painful conditions several decades ago. I thought I knew this illness landscape, but The Proactive Patient by Gaye and Andrew Sandler taught me how much more there was to learn. I learned something new on every single page of this informative and essential book. You will find everything here--information about diet, traditional and alternative therapies, self-help, managing sex and menopause and more--all in language that is straightforward and comprehensible to the non-professional. There is also a helpful and touching chapter written by Ms. Sandler's partner and co-author about his role in their shared journey. After enjoying a good read, you will want to keep this book nearby as a valuable resource you will come back to again and again for aid, information and support." Joy Selak, Ph.D., co-author of You Don't Look SIck! Living Well with Invisible Chronic Illness
"This book truly is a user's guide to the often misunderstood condition of Interstitial Cystitis. The complex symptoms and pathophysiology are described here in understandable and very thorough detail. By understanding this basis the patient can then explore the vast treatment options, which include both traditional and alternative therapies. I have been a practicing Urologist for 16 years and this book has widened my understanding of IC. I will be recommending it both to my patients and colleagues." Joy Nielsen, M.D.
"The Proactive Patient is even more resourceful and informative than the authors' first edition, Patient to Patient. This new revised edition should be read by every patient who has already been diagnosed, or believes they have IC/BPS and/or one of the related conditions. It should be mandatory reading for all healthcare providers - including doctors! - and students learning about the various symptoms and treatments, and especially how you as the patient can more correctly describe your concerns to healthcare providers. Most importantly, the health information here will enable you to live a much more active and fuller life. The best proactive patient is the informed patient." Cindy Sinclair, President, Pure HOPE, http://www.pure-hope.org/
"Gaye and Andy Sandler have written a very thorough and informative book on PBS/IC. This book will be a valuable addition to the libraries of IC sufferers. Knowledge is certainly power when it comes to living with this debilitating chronic disease. Thanks to Gaye for sharing personal experiences of her journey with IC." Barb Zarnikow, ICA Patient and Board Co-Chair, Interstitial Cystitis Association
What sets Gaye and Andrew Sandler apart from so many other authors who have written about interstitial cystitis is their focus on patient comfort. In The Proactive Patient: Managing Interstitial Cystitis/ Bladder Pain Syndrome and the Related Conditions, they expand upon her previous book by creating a resource guide that will help patients, young and old, as they learn to manage their IC symptoms, reduce pain, age gracefully and enjoy intimacy again. Every chapter provides the reader (and their family members) with tips and strategies to ease discomfort, control flares and better manage their symptoms.
The discussion of traditional therapies is balanced with alternative and complementary therapies for those patients who lack health insurance and/or prefer a more natural approach to treatment. If you, like many others, have faced hostile or unknowledgeable medical care providers, they provide tips on how to find and work with seasoned and compassionate pelvic pain experts.
Gaye was the first author to explore the relationship between IC and its many related conditions and expands that discussion dramatically in this new book, providing information and self-help tips for patients struggling with IBS, constipation, pelvic floor dysfunction, pudendal neuralgia, fibromyalgia, TMJ, hypothyroidism and others.
I particularly appreciated the chapter “Reclaiming Comfort in Your Body,” which explores exercise ideas, stretching tips and yoga poses that can help ease discomfort, lessen muscle tension and regain strength in a pelvic floor compromised by pain, particularly for patients who continue work and/or who struggle with sitting.
In recent years, we’ve learned that chemical sensitivity and environmental illness can play a significant role in the exacerbation of bladder symptoms and general health. This book explores chemical sensitivity and provides a plethora of ideas to help patients reduce toxic exposure and build a toxic-free home, clearly wisdom gained from their own experience with multiple chemical sensitivity. If you plan on remodeling or building a home in the near future, you’ll find their suggestions extremely helpful!
It is in the discussion of hormones, pregnancy, midlife and sexuality that Gaye and Andrew’s work shines. They review, in-depth, the struggles that women face as they age. If you’re not sure if hormone replacement therapy is right for you, they provide an excellent discussion of the pros and cons of various hormone treatments. They explore the challenge of intimacy with practical tips on how to reduce discomfort associated with intercourse. Patients exploring pregnancy will find the information on point, even down to the discussion of pros and cons of various delivery methods.
It is fitting that the book ends with a chapter written by Andrew, titled “Living with IC/BPS: A Partner’s Perspective,” who, with brutal honesty, shares his experience as spouse to an IC patient. He shows how a healthy relationship and family can not only survive but also thrive by creating a foundation of honesty and communication.
Gaye and Andrew’s desire to help others makes them a treasure of the IC movement. Thank you for, yet again, writing a book that will help patients regain their confidence, rebuild their strength, build their knowledge and, most importantly, ease their suffering.
Jill Osborne MA, President of the IC Network
Table of Contents
1. Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS)
Common Symptoms of IC/BPS
Suggested Theories for the Cause of IC/BPS
Population Affected by IC/BPS
Understanding the Inflammatory Processes of IC/BPS
Various Treatments Have Been Used for IC/BPS
The Cause of IC/BPS Flare-Ups
Is IC/BPS Contagious?
IC/BPS Has Been Known to Medicine for a Long Time
New Treatment Guidelines for IC/BPS 15
The AUA Advises Doctors and Patients to Avoid:
Pain Management Options Not Mentioned in the AUA Guidelines
Natural Supplements Used For IC/BPS
Overlapping Conditions and Symptoms
Autoimmune Diseases and IC/BPS
2. Following a Diet for IC/BPS
Using Prevention and Assertiveness
Irritable Bowel Syndrome (IBS) and Gluten Sensitivity
Diet and FMS
Children with IC/BPS and IBS
3. Reclaiming Comfort in Your Body
Sitting and IC/BPS
Support for Standing and Walking
Comfort and Support While Lying Down
Body Mechanics for IC/BPS
Exercise and IC/BPS
Gentle Stretching and Strengthening for Core and Pelvic Floor Muscles
4. Trying Hands-on, Traditional, and Alternative Therapies
Pelvic Floor Therapy
Traditional Physical Therapy
Osteopathic Manipulative Medicine
Mind/Body and Pain Management Programs
Relaxation and Visualization Exercises
Post-Traumatic Stress Syndrome
5. Coping with New Prescriptions, Doctors, and Sensitivities to Medications
Trial by Error
Trying a New Prescription
Surgeries and Hospital Stays
Coping with General Conditions, Routine Exams, and Procedures Without the Drugs and Fillers That Might Trigger IC/BPS Pain
Dealing with Serious Chronic Conditions
Foods That Help Prevent Toxic Build-up
6. Understanding Chemical Sensitivities and Environmental Illness
Multiple Chemical Sensitivity
MCS Is Not a New Condition
Causes of MCS
Physical Symptoms of MCS
Treatment for MCS
Can a Traditional Allergist Help a Patient with MCS?
Taking Control of Your Environment
Cleaning up Your Home Environment
Eliminating the Items that Expose You to Chemicals in Your Environment
The Work Space
Building or Remodeling a Toxic-Free Home
7. Identifying, Controlling, and Avoiding IC/BPS Symptoms with Self-Help
Pain Is Motivation to Change
Coping with Urgency and Frequency
When Flare-ups Turn into Pain Cycles
When Pain Cycles Cause More Stress in Your Life
Recognizing Your Pain Triggers
Improving the Quality of Your Sleep
Illness Breaks the Rules
8. Managing Sex, Menopause, Pregnancy, and IC/BPS
Sex and IC/BPS
Medical Diagnosis of Pelvic Floor Dysfunction
Intercourse and Pain Management
Managing Overlapping Conditions That Can Interfere with Sexual Activity
Dealing with Sex and Your Partner
IC, Hormones, and Mid-Life Changes in Women
Hormone Replacement Therapy (HRT)
Balancing the Body with Bioidentical Hormones
Menopause Management Without Hormone Replacement
Health Risks at Mid-Life
Pregnancy and IC/BPS
Delivery and IC/BPS
Coping with a Newborn
9. Living with IC/BPS: A Partner’s Perspective
Learning to Accept IC/BPS
Dealing with Feelings
Dealing with Other People
About the Authors
About the Artists
Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) is a chronic, painful inflammatory condition that affects the bladder wall. Although the symptoms of IC/BPS can mimic an acute urinary tract infection (UTI), the symptoms are not caused by bacteria in the urinary tract. Instead, the symptoms of IC/BPS are believed to be due to abnormalities of the bladder lining (also called the epithelium). Thinning of the lining and changes in the mucous coating of the lining (also called the glycosaminoglycan or GAG layer), that protects the epithelial cells, allow irritants and toxins to permeate and/or cause inflammation of the bladder wall and the exposed nerves. With permeability of the lining (a leaky bladder), deeper cells are also exposed to strong salts and toxic substances. As a result, pain spreads to the surrounding nerves, including the spinal cord, causing a type of neuropathy.
Common Symptoms of IC/BPS
Patients may be misdiagnosed if their only symptom is pressure. (Pressure and chronic awareness of the bladder is also considered pain.)
Over time, without treatment, the IC/BPS bladder may become scarred and stiff, which can limit the capacity to hold urine and empty the bladder completely. But, no matter the size of a patient’s bladder (patients can also have enlarged bladders) it is typical for patients to feel the urge to urinate even when their bladders are not full. On occasion, the IC/BPS patient may only experience pain and not frequency. Also unique are the patients who only experience frequency and not pain. Researchers are studying the symptoms and subsets of patients to better understand IC/BPS and how to treat it.
Blue Dolphin Publishing, 2014
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