"The best support group meeting I attended had a speaker who encouraged everyone present to take responsibility for developing a pain management tool kit. I think that is one reason why I'm not as frightened about IC flares as I used to be. In my tool kit, I have everything I need to cope with IC flares, anxieties and life in general. I make the commitment to build my personal coping skills each and every day. Do you?" - J. Osborne

A Patient's Plan of Action: Build an IC Tool Kit

• Introduction
• The Basic Tools of Survival
• IC Tool Kit Contents
• A Sample Too Kit

Introduction

The Basic Tools of Survival

We can best learn how to cope with IC by looking for others who not only survive, but thrive, even with the disease. These "veteran IC patients" typically have an assertive approach to their life and medical care. They are gentle and compassionate towards their own physical, mental and emotional needs. They have positive relationships and realistic expectations with their medical care providers. They accept change. Most importantly, they make a firm commitment to build their coping skills and IC tool kit on a daily basis.

1. Education
Information is power and, with IC, it is doubly so. Because IC did not receive mainstream acceptance until 1987, when the NIH had its first meeting on the subject, it's fair to say that we've only begun to understand the disease and its treatment possibilities. Information gathered just a few years ago may now be obsolete. As such, a successful IC patient actively gathers information on IC actively and continually. They have a zest for knowledge.

IC patients are also conscientious consumers of their medical information. They understand that there are many biases in the IC community. Physicians may naturally favor specific treatments. Researchers will favor specific theories. Patients will speak from their own unique experience and cannot give medical advice. As such, we must acknowledge these biases by not depending upon one source for all of our information. Successful IC patients gather information from multiple sources and carefully review the pros and cons of any course of action. We are very cautious when anyone suggests that they can completely "cure" IC. Many patients pursue second and third opinions before pursuing major treatments.

2. Record keeping
The sheer mass of information now available requires IC patients to be good record keepers and information managers. From keeping track of their medical records and appointments to faithfully maintaining a voiding (and/or pain) diary, successful IC patients take the time to organize and maintain their information. Later in this chapter, you'll find useful record keeping tools that you can photocopy and reuse.

3. A Physician - Patient Team
IC patients face a legacy of misperceptions about our disease and emotional state. At one point in time, IC was thought to be a hysterical disease of women. As such, do not blame physicians who are hesitant to care for us. That's just the way some were taught. Successful IC patients gladly accept their role as ambassadors for their own health and for other patients who follow in their foot steps. They seek to dispel any concerns about IC patients by being reliable and cooperative patients.

As we work with our physicians, our goal is to establish a positive, cooperative and trusting relationship with our medical care team. We respect their time on the phone and in the office. We are prepared for our office visits. If needed, we bring written questions. We always treat staff respectfully and, when able, offer the latest information on IC. We understand that our doctors are not Gods. They cannot fix us in one visit.

4. Acceptance of Change
The onset of any disease can be traumatic for the patient and family members. Confusion, anxiety, anger and frustration are all reasonable reactions. It's important to remember that we are normal people in an abnormal situation. We have to learn some brand new coping skills. We certainly didn't ask for this disease. We wouldn't wish it on our worst enemy, though sometimes, admittedly, we wish that some would at least have to live with it for a day or week to understand how we feel. But, we understand that illness happens and, at this time, our illness is interstitial cystitis.

It takes time and patience to work through the struggles and changes that any chronically ill patient can face. Veteran IC patients accept that there are good days and bad. There may be days when our burden seems very heavy, and many others where we're very glad for our lives. Just as our bladders have flares and remissions, so do our coping skills and outlook on life. But, the more informed we are, the more compassionate we can be to ourselves and those around us.

Here are many of the normal emotions that patients (and family members) have faced, often on a cyclical basis. Do you recognize yourself in any of these?

(1) SHOCK: Sleep Disturbance, Appetite Disturbance, Numbness, Irritability (2) DISTRESS: Emotional Flood of Feelings, Anger, Sadness, Fear, Difficulty Coping, "Why me?" (3) DISORGANIZATION: Hopelessness, Feeling like you're "going crazy," Difficulty with Memory & Concentration, Withdrawal/Isolation, Depression (4) ACCEPTANCE: Integration, Positive Feelings, Lessons Learned, Future Planning, Finding Joy

The skills to understand and cope with the above emotions don't appear miraculously the first night we have a flare. We are beginners at IC. Our families are beginners at supporting someone with IC. It makes sense to reach out to others who have gone through a similar experience and find out what has worked for them. It is comforting and appropriate to talk with other patients, families and/or professionals about how you are feeling. Then, we can see how others have dealt with issues such as how to discuss sex when it's painful and/or how to explain IC to family, children, employers and friends.

Successful IC patients understand that isolation can contribute to depression. They do not isolate themselves. On bad days, they pick up the phone and/or turn on the computer to find others to talk with, including friends, family members and their IC buddies.

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IC Tool Kit Contents

IC tool kits usually have five equally essential categories: (A) IC Medical Records (B) Medical treatment strategies to directly help the bladder, (C) Self Help Strategies, (D) Short term pain management strategies and (E) Long term pain management strategies.

(A) Your IC Medical Records
Help yourself by organizing your thoughts and information about your medical care. In less than an hour, using forms we have provided, you can create a complete, extensive record of your IC medical history for you and your family. Not only will it help you monitor your own progress, it will also serve as an excellent reference guide to use.

Medical Care Directory
The ICN Medical Care Directory will help you and your family keep track of the physicians that you are currently seeing and/or have seen in the past. Estimated time to complete: 10 minutes

My Emergency Care Instructions
Do you ever worry about what would happen if you were in a car accident and couldn't speak for yourself? How would the doctors know what medications you are taking or are allergic to? How would your family know what your health care concerns are? By taking just a few moments, you can give specific care instructions to your family about issues that worry you. I, for example, have instructed my family to tell the physicians to use a pediatric catheter, if needed, and to remember to use eye drops in my eyes at least once an hour.

Make a copy for your family and keep one in your wallet too. Don't forget to review it with various family members and/or friends who will be there for you. Estimated time to complete: 10 minutes.

My IC Treatment History
By keeping track of your treatments, you'll will be able to monitor your progress and provide a very simple tool to use with your doctors during each visit, as you negotiate current and future treatment strategies. Estimated time to complete: 10 minutes

My Support Directory
IC patients often make the mistake of thinking that their family members should offer them support and/or "should know" that we are feeling bad just by looking at us. Wrong! We cannot expect ANYONE to read our minds, nor should we focus all of our complaints and frustrations on family members who do not understand how IC feels. By having just a few IC buddies to talk with, we not only can receive but give IC support. Whether you find them in your local support group, the ICN buddy board, or in an on-line support group, you can use our patient support directory to list your personal IC support team. Estimated time to complete: 10 minutes

My Diagnostic & Testing History
From urine cultures to cystoscopies, it won't hurt to keep track of what procedures you've gone through, who performed them and where the records are kept. Estimated time to complete: 10 minutes

My Physician Appointment Log
In the era of managed health care, it is in the best interests of IC patients to be guardians of their medical care records. How? By keeping track of your physician appointments, the questions that you intend to ask, as well as the doctor's response, you can track the care that you have received. This can come in handy not only to remind yourself of any specific instructions given during the appointment, but also make a case during any health insurance disputes. Estimated time to complete: 10 minutes

Voiding & Pain Diary
When you visit your doctor and discuss your bladder, it's very important that you do not rely on your memory. It is not good enough to say "I don't think I'm any better." By using a voiding or pain diary on a daily or weekly basis you give yourself the ultimate tool to evaluate your bladder's status and progress you may be having with your IC treatment strategies. A voiding diary can be used daily for IC patients currently trying extensive strategies, or perhaps two or three times a week to keep track of the status of your bladder. If you're not keeping track of your bladder frequency and/or pain, how will you see the first subtle signs that a treatment is helping you?

(B) Treatment Strategies

If you are a new IC patient, you have many choices to consider. Research the treatment options available to you, by beginning with this handbook and other sources of IC information. Talk to others. Review the information you've gathered with your doctor and then develop a plan. If one doesn't work, then you'll know what you're going to try next! You have the benefit of many options!

If you are a veteran IC patient and feel that you have tried everything, we think you might be wrong and should try again. New research is revealing new treatment strategies and how older treatments are being refined. Dosages may have been changed and new drug combinations explored. Gather information constantly! Talk to other patients and get involved again! Go for it!

(C) Self Help Strategies

(D) Long Term Therapies for Pain Management (if needed)

(E) Short Term Therapies for Pain Management (if needed)

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A Sample IC Tool Kit (Mild/Moderate Symptoms)

SHORT TERM PAIN MGT
· Vicodin or other medications, as negotiated with your physician.
· Heating pad for muscle relaxation
· TENS unit
· Warm bathes
· Massages, if it feels good
· Instructions on when to call the doctor or emergency room, if needed

LONG TERM PAIN MGT
· Amitryptiline
· L-Arginine
· TENS
· Heating pad for abdominal pain
· Cool water for urethral burning
· Careful exercise
· Relaxation twice daily (*A MUST)
· Participation in a pain class, i.e. Mindfulness

SELF HELP:
· Strict diet
· Careful exercise
· Lubrication with sex (*A MUST)
· Participate in IC support group
· Short term counseling for depression.
· Listening to relaxation tapes to help sleep at night.
· Loose clothing
· Travelling ONLY when feeling reasonably well
· Giving myself permission to say NO if I'm not feeling well

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