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IC Self Help Strategies
"I remember sitting at my hospital's urgent care clinic for the second time in three days, my IC flaring. I was crying. I wanted to know why my IC kept coming back again and again. In my heart, I felt that I was doing something wrong, but I didn't know what that was. Then, the most remarkable thing happened. A doctor stopped me mid sentence, took my hand, looked in my eyes and said 'Jill, you haven't done anything wrong. It's not your fault. You just have a IC.' I had no idea that I was being so cruel to myself." - J. Osborne
After diagnosis, IC patients often struggle with understanding why their condition goes from remission to flare, remission to flare. Our goal is to become a pro-active patient and to learn as much as we can about the disease, it's various treatments and, most importantly, those self help strategies that can ease our discomfort on a day to day basis. From clothing to underwear, soaps to laundry detergent, IC patients have, for years, gathered information on what they feel are common self help strategies. These may be worth further exploration by IC patients as they seek to discover their personal IC "triggers."
- Answering the IC Questions
- Relaxation
- Clothing
- Undergarments & laundry
- Soaps
- Smoking
- Toilet Paper & Urine Burn
- Exercise
- Heat or Cold
- Restroom Access
- Coping & Support
- Family
- Respecting Your Limits
- Travelling with IC
Answering the IC Questions
IC patients often find it difficult to explain IC as a "bladder disease." It can be helpful if you develop quick, truthful answers to some of the more common and potentially annoying questions that IC patients have faced. Here are a few standard IC questions and how IC patients routinely answer them. Question: What is IC?
Answer: IC is an inflammation of the bladder wall. We don't know how it
happens, but it does effect over 450,000 people in the United States.
Question: What does IC feel like?
Answer: It feels differently for different people. Most have frequency,
urgency and/or some degrees of pain. Some describe it as ground glass
or razor blades in their bladder. For me, it feels like (fill in your
own words)
Question: Why can't you just hold it for more time?
Answer: It's not that easy. I would if it weren't so painful and uncomfortable.
When I need to urinate, I need to immediately. Until I do, the sensation
will just get worse and worse.
Question: Why don't you just drink cranberry juice?
Answer: Cranberry juice is effective for patients with infections because
it may help reduce the ability of bacteria to cling to the bladder wall.
However, with IC, there is no infection. The high acid of cranberry juice
can provoke extreme pain for IC patients.
Question: Why don't you look sick?
Answer: One of the great tragedies of IC is that it's not visible from
the outside. You can only see IC during a very specific procedure in the
operating room.
Question: How are you feeling today? Hasn't it gone away yet?
Answer: I'm having an IC day today and am not at my best. Thank you for
asking.
Question: Can't you just take a pill or something for that?
Answer: If I could just take a pill or something for this, I would. There
is no cure for IC and no one treatment works for everyone.
Question: How come you 'sleep' so much?
Answer: Usually I'm not 'sleeping.' By lying down, I relieve the pressure
on my bladder.
Question: Now what's wrong, I thought you were feeling ok yesterday?
Answer: One of the hardest parts about IC is that it comes and goes, often
on a day to day basis. I am having a flare today.
Question: Why don't you stop thinking about it, you're just making
it worse by dwelling on it.
Answer: If thinking about it could make it worse or better I would tell
myself that I was fine and I would be. You can't change a medical condition
by ignoring it or wishing it away.
If you have any new questions that we can add to this list, please send them to: ICN, 4773 Sonoma Highway, #125, Santa Rosa CA 95409
Relaxation
The natural response to pain and illness is tension, anxiety and worry. As many IC patients know, the more stress we are under (from IC or other sources), 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. Your family, and your body, will thank you for the effort.. We recommend the tapes by Potential's Unlimited. Call today for a catalog at 1-800-426-3963. Tapes run about $10 each. Great for travelling too!
Clothing
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.
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
Soaps
Many IC patients have discovered that bubble baths and strong soaps can provoke symptoms. 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.
Smoking
Many IC patients feel that smoking tobacco worsens their symptoms. Because smoking is the major known cause of bladder cancer, one of the best things a smoker can do for the bladder is to quit smoking.
Toilet Paper & Urine Burn
Did you know that blue dyes can be irritating for some people? 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. Costs about $2.00 at your local drug store!
Exercise
Exercise can be amazingly challenging for an IC patients. Some IC patients feel that regular exercise helps relieve symptoms and, in some cases, hastens remission. Others can correlate increased IC pain with vigorous exercise. For the IC athlete, smooth activities which keep the hips level with minimal jarring to the bladder, are an ideal compromise. Walking (rather than running) and gliding on a ski machine (rather than a stairmaster) seem to be reasonable alternatives for IC patients. If you have any concerns about your exercise level, or if you wish to resume vigorous exercise, please consult your physician first.
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.
Restroom Access
Some patients have found it comforting to have a MedAlert bracelet and/or card to help them gain access to restrooms. MedAlert application forms can be found at most pharmacies. The language of choice for your bracelet is: "Interstitial Cystitis: May need frequent restroom access." For more information, please contact Medic Alert at: 1-800-432-5378 or visit their website at: www.medicalert.com
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 ICN offers twice weekly support group meetings. There is also monthly support group that meets via America On-Line.
If you are looking for a regional support group, please visit the ICN web site and/or the various associations for IC. For USA patients, please note that there are support groups affiliated with local hospitals, physicians that function independently from the ICA. We welcome all support groups and affiliations on our neutral web site.
(Editors Note: If you belong in an IC support group that would like to be listed on the ICN web site, please send contact the ICN. All listings are provided at no cost.)
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.
Respecting Your Limits
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. We strongly disagree. A good comparison is someone with a broken arm. If you had a broken arm that was hurting, would you ignore it and use that arm anyway? Of course not. 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.
Travelling with IC
One of the most frustrating challenges of living with IC is the difficulty that many of us have travelling. In my own case, I have found that the vibration of the car can provoke very intense pain. For those with urgency and frequency, access to a restroom is the dominant need and concern. Evelyn White, former IC-Redwood Empire Group Leader and now Arizona ICA State Coordinator, wrote the following tips to help me on my first journey in three years. They're so good, we've decided to share them with everyone! And, I'm happy to say that for the first time in three years, I was able to fly across country and drive almost 1,000 miles. With hope, planning and determination, many IC patients can travel successfully!
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You Can Travel with IC
By Evelyn White, IC patient
If you are like me, traveling with IC can be very challenging and down right scary. I have refused to let IC keep me a prisoner in my home, but I have developed a lot of coping strategies that make my trips much more comfortable, and I would like to share them with you.
1. Consider using a TENS unit if you have pain with travelling. Having my TENS unit makes me feel as if I have one more security device to fight my IC pain. If you don't have a TENS unit I would highly recommend discussing this with your doctor. He can prescribe the unit and should have a company that will allow you to "try before buying." Don't forget to wear pants or a skirt with an elastic waist so that you can adjust the pads easily.
2. Before you leave your house consider taking pain medication as a preventative measure (if you are a pain patient). Often I have found myself on a plane speeding down a bumpy runway, with my bladder screaming at each bump. Now I take my medication on the way to the airport.
3. Whether dining in a busy restaurant or in many public areas, we all know the ladies line up down the street waiting for the restroom while the men's room is empty. Have courage and use the men's room, especially if there is only one stall and you can lock the door. I do this all the time. I wouldn't suggest using the men's room at a 49ER'S game, a rest stop or a concert, but it has saved me many times. People do look at you as if you're an alien when you use the men's room, but I say when you've got to go, you've got to go!
4. If you are stuck in an Airport due to a long layover or a late plane, find a quiet corner and simply stretch out on the floor. It can certainly relieve an aching bladder from long periods of standing or sitting. Once you feel some relief you will not care that people are sneaking looks your way. Besides, that does not matter. Getting to your destination with the least pain possible, does matter.
5. While on the plane, try to reserve an aisle seat (NEVER the middle seat). Coach seating is so tight these days it's almost impossible to move around, but when you are stuck there make the best of it. Carry your walkman with relaxation tapes, the newest and best novel, and use that TENS unit. If you have short legs, sit in a lotus position. Remember, when our pain level is controllable, we can travel with IC. DO IT!