A: Yes, many patients have learned that diet can influence their IC flares. Foods which are highly acidic, alcoholic and/or salty are well established triggers for IC. We offer extensive diet and self help information.
Q: What are the risk factors for developing IC?
A. Tough question. In all honesty, I just don't know. It's clear from epidemiological research that some IC patients have a history of childhood bladder infections as I mentioned earlier. In addition, patients talk anecdotally about possible genetic ties. In my family, both my mother, sister, aunt, cousin and grandmother have had a wide variety of bladder symptoms, though not specifically IC. In other cases, there has been some discussion of patients developing IC after surgical procedures or hospital stays. Yet, these have not been decisively confirmed. We'll have to wait for more research to verify risk factors.
Q:Where can IC patients turn for support?
A: IC activities have now been developed in several countries including Australia, New Zealand, Canada, the USA, England, the Netherlands and Germany. Our internet support groups via the ICN offer the opportunity for patients from around the world to offer support to each other. In the USA, there are independent, hospital affiliated and/or ICA support groups. Patients have several options to explore based upon what is found in their region.
Q:What advice do you have for IC patients?
A: Excellent question. IC is a difficult disease to have because it is not visible on the outside. We face the unique challenge of having to convince doctors and family members and friends that we are truly uncomfortable and in need of care. I believe that patients need to be responsible participants in their medical care. We can't expect to walk into a doctors office to receive the cure. There is a chance that we might have a doctor that doesn't even accept IC as a real disease. We have to be prepared to work effectively with our doctors, to gather information that could be helpful, and to be an active participant in our medical care.
A successful approach to IC is well rounded. Although we all wish that we could do just one treatment to cure our IC, this is not a reality at this point in time. Instead, we must try build a tool kit of effective strategies that work together to improve our lives and our IC. Bladder treatments aimed at healing are a priority. Yet, in addition, we also need a healthy balance of self help strategies and diet. There has never been a more important time for an IC patient to learn good relaxation and stress management strategies. And, when it comes to our emotional well being, having IC can impact our relationships and family lives. This is a good time to focus on new skills, including the use of short term strategies like counseling.
Q:Is there anything I haven't addressed that you feel is important for women to know?
A: As a support group leader, one thing that I see over and over are women who worry that if they slow down and rest, that they are "giving in" to their disease. Often, they force themselves to go to family and social events despite very difficult levels of pain because they want to be normal. Inevitably, their refusal to slow down can lead to agonizing levels of pain that are far more difficult to treat.
I believe very strongly that we must have a healthy respect for our limits. If we were in a car accident and had broken our leg, it would be in a cast and we would not be running on it. Yet, with IC, we can't immobilize the bladder and because patients can easily move, they forget that their are, in essence, wounded. A healthy respect for our bodies need for rest, as well as early recognition of pain so that we don't make ourselves worse, is essential to long term coping.
Lastly, many women feel that if they stop and rest, that they are not being good mothers or wives. It can become a brutal cycle of despair and frustration, in which they come to believe that they don't deserve support from their family. They and we must remember that we all get sick at one point in time in our lives. As mothers or wives, we would tend those that we love. Yet, when we ourselves are ill, we often don't ask for the support that we need. Chronic illness does not change the love that we have in our hearts for our families. It is ONLY a physical illness. Perhaps this is your time to let your family care for you. So, on those days when you can't go to the ballgame, or to work, or to make love with your husband, remember to tell them that your love remains strong but that, for the moment, your body just needs to rest. And that it's okay to rest for a while.
