Surviving Painful Flare Ups
By Gaye Sandler
For the past year, IC support group leader Molly Glidden and I have been working on a new IC book. The following column is from Please Understand; An Interstitial Cystitis Guide for Partners, which will be available this summer.
Like most IC patients, I have a constant awareness of my bladder. It is similar to the pressure you feel when you have to relieve yourself, but the pressure I feel usually affects my pelvic floor, abdomen, low back, hips and legs. With time, I have become used to this pressure and discomfort. However, itís a very different story when I am in a flare up.
A flare up can develop slowly, or strike right out of the blue. No matter when a flare-up takes hold, itís like having a dark veil dropped over my spirit. Every thing looks and feels different the minute the excruciating pain begins. The pain makes me very emotional. In fact, itís almost impossible not to feel emotional because the pain affects the part of my brain that carries emotion. Thus, the pain automatically induces an emotional response that stops me dead in my tracks.
Although itís important for me to learn how to cognitively deal with a flare up (modifying my response to the pain to better cope with the situation), it is a huge disappointment for me and for you. Feelings of guilt or self-blame will only make the pain worse, which wonít help either of us.
You may feel helpless when you see me in so much pain. And, although I may need to be alone to self-nurture, there are many helpful things you can do for me, like preparing meals, going to the grocery, running errands, buying me a good book, or renting a movie to distract me from my pain. Helping me by doing these kinds of things can relieve the fear and anxiety associated with acute bladder pain. Helping and supporting me during this time can also speed my recovery, which will obviously help both of us.
CARETAKERS NEED CARE TOO
Even though my flare up probably wonít last forever, I canít predict how long Iíll be in pain or how long Iíll need your help. Therefore, itís very important for you to get out and enjoy life a little on your own. As we all know, exercise is a great stress reliever. Taking brisk walks or doing other forms of exercise may help you to reduce the extra stress in your life. It may also be good for you to visit with friends who can take your mind off of the situation at home. After a certain length of time, itís probably also good for me to get out of my environment, even if itís just for a short walk. But, I need you to respect my pain, so this has to be my decision. Feeling pressured to do anything can increase my pain.
BECOMING A DETECTIVE
Foods and Drinks
We donít know what causes IC (yet!), but we do know of many things that can cause flare ups. Fortunately, thanks to experts and long time ICíers, there is a forbidden foods list that I can refer to. This list includes drinks such as coffee, tea, colas, and orange, tomato, cranberry, and grapefruit juices, as well as many acid and aged foods. Avoiding the forbidden foods may not only help my bladder, it can also give me a sense of control and the self-awareness that enables me to prevent pain. Even though it takes extra work and patience to make diet changes, it is so worth it for both of us in the long run. (Note: there are some lucky patients who donít need to follow a restricted diet, and some who say that restricting foods does not help them.)
Reading labels at grocery stores and asking questions at restaurants, or before dinner parties are all small tasks when compared to the extra stress of a big flare up. Itís quite amazing how one or two bites or sips of the wrong food or beverage can turn my world upside down, but they can. This is also true of medications.
Medications and Supplements
One of my biggest challenges is trying different medications and supplements. Many over-the-counter and prescription drugs, as well as vitamins and other supplements (including their capsules, fillers, and dyes), can set off painful IC symptoms. Therefore, trying new drugs, vitamins and herbs is always a ďtrial by errorĒ prospect. (Patient sensitivity varies.)
I have to become a detective in order to avoid the drugs and fillers that hurt my bladder, but this isnít easy. For example, a pharmacist might give me a generic drug without my knowledge, or the color or shape of my medications may change. And, I canít depend on a pharmacist to tell me which medications will irritate my bladder. Pharmacists know very little about chemical sensitivity in IC patients. Itís the same with doctors. There is no forbidden medications list for IC patients, in spite of the fact that there are some known medications that can cause flare ups. Recognizing and avoiding the culprits that flare up my bladder is essential, even when doctors disagree about the culprits.
Certain chemicals in household cleaners, laundry detergents, air fresheners, perfumes, personal care products, new carpets, and various materials used in new homes and new cars may make me feel ill and sometimes cause my IC symptoms to flare up. Put simply, whatever I eat, drink, breathe, put on my skin or in my body can affect my bladder where sensitive tissue and nerves are exposed.
Needless to say, stress can be one of the major causes of an IC flare up. However, stress does not cause IC- it just brings it out. The hormones that stress activates can affect the function of the bladder. Even the thought of stressful events may increase bladder sensitivity through the messages to the muscles. Reducing the stress in my life is preventive medicine.
Both travel and waiting in lines are very stressful for me. So are commitments, especially to people who are difficult or demanding, or donít understand or believe in IC. It takes a lot of trust just to get into a car with others because I canít predict how the motion of the car will affect me. I also canít predict if Iíll need to stop or even return home if my bladder pain kicks in. For that matter, I may prefer being the driver. Having control is often crucial to my comfort level, as is feeling understood and loved by family members. Having support is so important because it reduces the stress in our lives.
IC symptoms may flare up with the hormonal swings of the menstrual cycle, as well as during pregnancy and menopause. Being aware that I may have more bladder sensitivity during certain times allows me to:
Being aware that I may have flare ups during certain times may also help you to understand my limitations.
Since IC is invisible itís difficult to see how patients are physically challenged. But when the pain pattern of IC affects the whole body, exercise and physical activity become very challenging. Even the impact of walking causes the bladder to flare up in some patients. Fortunately, gentle stretching and strengthening may help me reduce the pain pattern that makes physical activity painful.
The right kind of stretching and strengthening can also help me to prevent or reduce injury during everyday tasks. For example, when I am weak and tight from the pain pattern I am in, putting away the dishes may cause sprains or tiny tears in my muscles, and may even set off a bladder flare up. But, with appropriate gentle exercise, good body mechanics (working smarter), and proper body support, I may be able to prevent pain.
Some IC experts believe that IC is an allergy. There certainly are a great number of patients who experience allergies and/or chemical sensitivity. And, the seasonal changes during spring and fall do appear to cause IC flare ups in many patients. Knowing that I may be vulnerable during seasonal changes helps me to take more preventive actions during these times.
REACHING OUT TO OTHER PATIENTS
I know that you are already thinking ďThank goodness for other IC patients,Ē
and I am, too. Only another IC patient can understand what a flare up feels
like. However, your support and understanding are very instrumental to my
The Interstitial Cystitis Network
Revised: 6/24/05 - kj