One very frustrating aspect of having a disease like Interstitial Cystitis for patients is understanding why their condition goes from remission to flare, back and forth, over and over. In order to help minimize flares, it is crucial for patients to be proactive and to learn what to do with their condition and what not to do. We need to learn as much as we can about our illness, the different treatments available, and strategies that will help decrease discomfort on a daily basis.
Here are some self help strategies gathered over the years from IC patients:
The natural response to pain and illness is tension, anxiety and worry. As many IC patients know, the more stress we are under, the more tense we become and the worse our symptoms can get. An IC patient wouldn’t be honest with themselves (or their family) if they also didn’t admit to occasional moments of intense irritability. Therefore, we must make a committed effort to relax our bodies and our hearts. The easiest way to begin is by learning reliable relaxation skills. A good relaxation audio tape when listened to twice a day for twenty minutes (not music, or TV, or listening to the radio) allows our bodies to rest, recover and heal from the stress of the day.
Comfortable and loose clothing is essential for an IC patient, particularly during flare periods. Many IC patients prefer wearing skirts and loose pants. Belts, tight jeans, and pantyhose can put uncomfortable pressure on the waist, abdomen and urethra. Loose cotton leggings, thigh high stockings are good alternatives. When I was first diagnosed with IC and I was at my worst, I was also working in upper management in direct sales. Part of my “wardrobe” was panty hose. I could not stand to wear them it hurt so bad. Be comfortable – even if that means you have to go without underwear! Do whatever makes YOU feel better!
Undergarments & Laundry
Given the fact that IC patients may experience both urethral and vulvar inflammation, IC patients appear to favor plain white cotton underwear, rather than nylon, polyester. For those with greater skin sensitivity, using a mild laundry detergent (such as ivory) and rinsing your clothing twice prior to drying may reduce itching and inflammation common with soap sensitivities. At my worst with IC, I could not even wear underwear. I was buying bigger sizes and everything and I still had too much pain and sensitivity.
Many IC patients know that bubble bath and other scented soaps can worsen their IC symptoms. I love taking bubble baths and for the longest time I could not use any type of bubble bath or soap that was fragranced. For the shower and bathtub, veteran vulvadynia sufferers recommend using mild, non-scented soaps such as Basis or Dove. For an extra touch in your bath water, try using a few tablespoons of baking soda for an extra soothing touch.
Many IC patients have said that smoking worsens their symptoms. I can’t attest to this myself because I quit smoking 10 years ago, long before I was diagnosed with IC. Smoking is the major known cause of bladder cancer, so quitting can only help!
Toilet Paper & Urine Burn
Like white underwear, plain white toilet paper seems to be the common preference for IC patients with an attention to detail. There may be days, though, when using even toilet paper can be irritating or that it feels like your urine is hot and burning your outer tissues as it leaves your body. A soothing alternative is the use of a small squeezable water bottle (with a fountain spray head) filled with cool water. Not only will it reduce the burning sensation, it will cleanse your tissues of any residues of urine, which can, itself, be irritating. Towel dry softly afterwards.
Heat or Cold
Some IC patients find that either heating pads or cold compresses are particularly helpful during flares. Several types of heating pads are available, including electric or microwavable. Microwavable pads are portable and ideal for travelling and/or plane flights. Flight attendants will heat them for you with their onboard microwaves. With both types of pads, avoid burns by following the instructions provided with the heating pad.
For cold compresses, placing ice in a plastic baggy prevents leakage. Don’t place ice directly onto your skin. Wrap first in one or two clean wash cloths or flannel pads.
Exercise can definintely worsen IC symptoms for some patients. Other say that an increase in exercise helps their symptoms and puts their IC into remission. Exercise is crucial for all of us and it is just finding the type of exercise that works best for YOU. If it is just walking very slowly for a few minutes, that is better than nothing at all. Experiement and find what you can tolerate.
Coping & Support
One of the worst things that IC patients can do is suffer in silence, at home alone. Your job, as an IC patient, is to be as active as you can be, to learn as much as you can about IC and to ask for help when you need it. Getting involved in an active, hopeful support group is a great place to meet others, to be inspired by the successes of others and to find that support that you need and deserve.
If you have access to the internet, you can participate in several English speaking on-line support groups at no cost. The IC-Network has a list of support groups around the U.S. available on their website for local meetings you can attend.
Explaining IC to your Family
Will your family member ever understand IC? The answer is a resounding “No.” Until they live with this disease and personally experience its symptoms and frustrations, they will never understand IC to the degree that we want them to. On the other hand, your family members may be frustrated about their inability to make you better. In addition to using the resources of your local IC support group, it’s reasonable to consider using a local therapist for some short term family counseling so that you can all find new ways to communicate to cope.
Learning Your Boundaries
When your body is in pain, it’s saying that it needs attention and time to heal. IC patients, though, often ignore those clues. Some feel that if they stop, that they are “giving into” IC. This is not true. We can’t stop using our bladders, but we can listen to those first few signs of a flare and slow down, if needed. By catching pain and discomfort early, we have the chance to stop the pain from progressing. Whereas, if we ignore it until it becomes a raging inferno, odds are that even pain medications won’t be able to touch it. Listen to your body. If it is uncomfortable, give yourself permission to stop and rest.