IC Does Not Change Your Heart....
Yes, this is a strange way to begin a self-help section but it's important. Interstitial cystitis cannot change your heart. You are still a daughter, mother, husband, son, grandmother and your capacity to love is, quite possibly, even stronger today than it was before IC. We encourage you to nurture your family connections through phone calls, emails, potlucks and more. Don't lose touch. Stay connected and remember that it is your family and close friends who want to care for you. Ask them for help when you need it.
Your capacity to learn and grow is as powerful today as it was yesterday. IC does not change your intellect. Thus, we encourage you to take a moment, each day, to learn more about IC through books, newsletters and websites. The more information you gather, the better you will be able to discuss your medical care with your physician.
IC does not change your hands. You can still write, paint, draw, write or work with a computer. What you choose to do with your hands will make the difference. Taking the time to do a voiding diary can help you track your symptoms. Writing in a journal can help ease your worries. Immersing yourself in a hobby can brighten your day and give you a sense of accomplishment.
If you find yourself struggling on any given day, ask yourself a very simple series of questions.
(1) What can you do, at this very moment, to soothe your bladder?. Would a heating pad help?? How about using your medication??? Would resting help?? If so, do it!
(2) What can you do, at this very moment, to lighten your heart?? Call a friend or family member. Get on-line and connect up with an IC buddy?? Get out and take a walk in the park??? Just do it... big or small... just do it!
By being active, rather than passive, you will go far!!!! Now prepare yourself to do some work!!! It all begins with you!
The IC Diet
If you're new to IC, the first practical thing that you can to do help your bladder is to modify your diet. It's quite simple. When your bladder is wounded, irritated or injured, it's very susceptible to irritation by foods such as coffees, teas, green teas, sodas, diet sodas, cranberry juice, etc. Worse, a daily acid wash can prevent the bladder from healing in a timely manner. Thus, diet modification is your first line of defense.
Managing IC Flares
Many IC patients have periods of flare and remission. Some patients report flares after eating foods that irritate their bladder, such as coffee or diet soda. Men and women with IC often experience flares after driving in a car or having sex. Many women experience flares when they ovulate and/or right before their period.
Exercise and Fitness
IC Friendly Exercises
Exercising with interstitial cystitis has pros and cons. Some IC/PBS 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 athlete, smooth activities which keep the hips level with minimal jarring to the bladder, are an ideal compromise. Rowing, for example, is a great exercise as it puts no pressure on the crotch, does not traumatize the pelvic floor muscles and provides a great aerobic workout using both your arms and legs.
We suggest the following exercises:
- Walking rather than running. Smooth fast walking keeps your hips level yet gives you a great aerobic workout.
- Elliptical machine rather than stairmaster.
- Recumbent bike riding rather than spinning. A recumbent bike puts much less pressure on the crotch.
- Stretch classes
- Gentle Yoga
- Gentle weights- Please avoid the machine that drives your knees in and out.
- Swimming - Pool chemicals are the biggest barrier here. Try to find a pool that doesn't chlorine. Always remove your suit and shower immediately after leaving the pool.
Because IC patients often struggle with muscle tension, it can be hard for us to do some of the workouts we're very used to, such as spending 40 minutes on an elliptical machine. Unfortunately, some of these machines can create pelvic floor muscle tension if used to excess, thus it's important to mix up your workouts in the gym. Try five minute intervals using the treadmill, rower and recumbent bicycle.
Alternate your workouts regularly between aerobic and strength building (resistance training) activities. Aerobic exercises build heart and cardiovascular fitness as well as improve your stamina, immune system and mental outlook. Resistance training (weight lifting with free weights or machines) helps tone muscles, builds lean muscle mass and reduces the risk of osteoporosis. Many athletes alternate between aerobic and resistance training every other day.
Listen to your body. If an activity creates pain, stop and change to something else. On days when you're IC is flaring, don't force yourself to workout. Sometimes a quiet walk up and down the street is all you need to lift your spirits and mobilize your body's natural pain fighters, the endorphins.
If you're going to embark on a new, aggressive, exercise program, please talk with your doctor before beginning, particularly if you're very out of shape. Go slow!
Clothing & Soaps
Comfortable and loose clothing is essential for an IC patient, particularly during flare periods. Why?? IC patients often struggle with what we call "The IC Belly" that comes and goes during flare periods. It's not weight gain but just a sign of inflammation. Thus, many IC patients prefer wearing skirts, stretchy jeans, yoga pants and/or anything else that doesn't put pressure on the belly and crotch. Belts, tight jeans, and pantyhose can put uncomfortable pressure on the waist, belly and urethra. Loose cotton leggings and thigh high stockings are good alternatives.
Undergarments & laundry
IC patients also often struggle urethral and vulvar inflammation. (Can we say "enough" already??) They might have urethral burning, a sensation of feeling "hot" while urination or burning on the vulva. Why? Well, it appears that neuroinflammation is the culprit and that the nerves in that area generally become more easy to irritation. Thus, IC patients are often VERY chemically sensitive, particularly to fabrics and laundry detergents.
For underwear and panties, we suggest simple white cotton underwear, such as the Jockey String Bikinis. We strongly suggest that you avoid nylon and polyester.
For laundry detergent, we recommend ONLY Ivory Snow or Dreft and please rinse twice to make sure that all residue is removed. The mass market Cheer, Tide, All brands are actually quite notorious for triggering irritation and urethral symptoms in many of us, including their "free" versions. Please DO NOT use any fabric softeners or dryer sheets to reduce static. These always leave a chemical residue in your clothes that can trigger irritation.
Self Help Tip - The Case of the Poison Underwear
Self Help Tip - Reducing Skin Irritation & Urine Burn
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, DOVE bars or Very Private Body Wash. For an extra touch in your bath water, try using a few tablespoons of baking soda for an extra soothing touch.
Restroom & Travel Supplies
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 (i.e. urine burn) and burning your outer tissues as it leaves your body. We suggest using plain, white toilet paper, preferably very soft (i.e. the Costco brand is fine) or the Purely Cotton line of toilet papers.
If toilet paper is simply too irritating there are some intimate wipes that don't have the preservatives which can trigger vulvar burning. Natracare Intimate Wipes and Seventh Generation Baby Wipes can be a soothing alternative.
The most soothing of all is simply spraying yourself with water (just water, no chemicals please) every time you use the restroom. How? With a simple squeezable $3 periwash bottle. 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.
Travelling presents its own unique challenges for IC patients. Asking a patient to "hold it" while driving in a car can be excruciating simply because of the jarring of the wheels. Luckily, there are two very easy items that will empower you to take long car rides without the worry of restroom access.. the Popup Tent and Traveljohns. It is important to fight the often self imposed isolation of IC by living your life and going out. The TravelJohn will give you just the comfort that you need to take a trip. Fits easily in your purse, works very effectively, doesn't leak and can be whipped out in a moment's notice.
Self Help Tip - Flying The Friendly Skies
Self Help Tip - IC & Driving: How To Survive A Long Commute
Self Help Tip - The New Car Blues
Because many IC patients struggle with tight pelvic floor muscles, in addition to bladder irritation, sexual relations (particularly intercourse) can be challenging. Men with IC often experience pain at the moment of orgasm when their muscle spasms are the most intense. Women with IC often experience discomfort and their "IC flare" the day after sex when women typically experience uncomfortable muscle contractions for many hours after intercourse. Thus, the secret to sexuality is to pay attention to muscles and, if needed, employee strategies to help reduce and control muscle tension.
Answering Questions About IC
Talking about the bladder can be embarassing but, even more challenging, are those well meaning family or friends who insult you by stating that it is all in your head or who wonder why you are "still" not feeling well. You should develop quick, truthful answers to some of the more common and potentially annoying questions that IC patients have faced so that you can protect yourself, if needed. (Handing a copy of the book The IC Survival Guide often nips questions & accusations in the bud, thank goodness.)
Here are a few standard IC questions and how IC patients routinely answer them.
Question: What is IC?
Answer: IC is an inflammation of and/or injury to the bladder. The bladder can have dozens wound (i.e. Hunner's Ulcers, Petechial Hemorrhages) that can be quite painful. IC affects over 1 million people in the United States.
Question: What does IC feel like?
Answer: It feels differently for different people but most people describe it as feeling like a bad bladder infection. Most patients have frequency, urgency and/or pain, particularly as the bladder fills and urine touches the wounds in the bladder. Patients may have trouble sleeping more than brief periods at a time due to their bladder discomfort. 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. When urine hits the wounds, it creates tremendous pain and discomfort. The only way to reduce that pain is to urinate. 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, orange juice and coffee 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: 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 or bladder wound by ignoring it or wishing it away.
Learn New Skills To Manage Stress & Anxiety
Does stress cause IC? The answer, of course, is no. It's hard for stress to cause a wound in the bladder. However, stress can certainly exacerbate the symptoms of IC as proven in a wide variety of research studies. Stress can activate mast cells in the bladder wall, thus leading to the release of the very irritating histamines. Stress may result in increased levels of nerve growth factors in the bladder. High levels of stress can certainly trigger an IC flare. Thus, its important that you take a look at the stress level in your life and be proactive about controlling and reducing it. Here are some great stress management options:
Take a stress management class! A two hour class could change your life for years by giving you some useful, effective tips for handling stress. Thinkg about it? You weren't born with the skills to handle stress. Go learn some rather than try to recreate the wheel at home.
Try some relaxation methods. Pain creates muscle tension which, in itself, can then exacerbate the pain and make it worse. This is why most pain management programs teach you relaxation methods. From listening to a guided relaxation CD to trying meditation, having a calm, peaceful and relaxed body will help! Click here to view several customized relaxation exercises that can help fight flares, reduce pain and improve sleep!
Massage helps. Whether you have a massage once a year or once a month, massages help reduce muscle tension, improve blood flow and, most importantly, make you feel pampered. You're working hard to cope with IC. If anyone deserves a massage, it's you! Save up for it if you can't afford one.
Find someone to talk with. Sometimes, our stress is so complex that we need the help of an expert to really get to the bottom of it. Luckily, counselors and therapists are not only great at stress management, they can also share real, practical tips that can help relieve your burden. A good example is how to handle a toxic relationship and/or someone who demeans you because of your illness. You deserve respect and care, not insults. If you're struggling with family members who just don't get it, find a therapist and ask for strategies that can help.
Who wouldn't have some anxiety when faced with a new medical condition or, worse, pain? Anxiety is a normal response to this situation but when anxiety limits our life, anxiety MUST be treated. Yet, IC patients may be struggling with a double whammy. It appears that anxiety disorder is a genetically related condition to IC. Most IC patients struggle with varying levels of anxiety, often from childhood. And, as we've said before, you should feel no shame nor blame about this. It just happens, often the result of hormonal or even thyroid changes.
Anxiety has two specific components: the sometimes scary physical symptoms (i.e. a panic attack) and all consuming negative thoughts and worries (catastrophic thinking). In a typical panic attack, a patient often feels their heart racing and a strong sense of doom. In controlling and reducing physical symptoms, eating right is essential. Four foods, known as CATS, strongly contribute to physical symptoms, including: caffeine, alcohol, tobacco, sugar (including artifical sugar). Not sure if you believe that?? Try creating a diary that compares your food and anxiety levels.
Breathing can be a powerful weapon against anxiety. Oxygen counteracts the negative effects of adrenaline. Learning good deep breathing techniques, particularly during an anxious episode is vital.
If anxiety is limiting your life and/or making you miserable, there is hope. Anxiety is treatable. ICN President Jill Osborne believes that the six week anxiety management class that she took at a local hospital completely changed her outlook and she hasn't had a panic attack since. Here are some great options to explore.
#1 - Take an anxiety management class. There's nothing more comforting than walking into a room of friendly (albeit faces) of people just like you who are looking for guidance. You'll make great friends, learn quickly that you are not alone and, best of all, learn strategies that can help. Many local hospitals and medical clinics offer free or affordable classes in anxiety management. Call their medical education department and ask for a schedule. Kaiser Permanente, for example, has a superb and affordable anxiety management program at almost all of their clinics that is open to the public, not just Kaiser members.
#2 - Books & Audiotapes. If you're not ready to meet others (You should! It's fun... really!!!), there are books (Coping with Anxiety, Self-Nourishment Companion, etc.) that can get you started in the right direction. Audio programs (Freedom From Worry) can also help!
#3 - Anxiety Experts - There are counselors that offer superb anxiety management programs throughout the USA. Ask doctors and friends for recommendations and check listings in your phone book!
You Don’t Look Sick!: Living Well with Invisible Chronic Illness chronicles a patient’s true-life accounts and her physician’s compassionate commentary as they take a journey through the three stages of chronic illness—Getting Sick, Being Sick, and Living Well. Buy Now
The Hatha Yoga Program for People with IC was developed in the late 1990's for patients with IC. Buy Now
A cardio walking workout is one of the easiest yet most effective ways to lose weight. Get Moving! Walking for Weightloss integrates fitness-walking movements with low impact aerobics techniques. Buy Now
This handy little book, The Daily Relaxer, is one of the easiest and most effective to read if you struggle with relaxation. It's filled with daily tips and strategies to reduce stress and RELAX! Perfect for patients struggling with muscle tension! Buy Now
It is very normal to experience anxiety when faced with a new, confusing and/or painful condition. But, it's not normal to let it dominate our lives. This new book offers ten simple ways to relief anxiety, fear and worry. Don't let anxiety dominate your life. Do something about it today! Buy Now
To a depressed person, the prospect of reading a book or enacting its recommendations can be overwhelming. Author John Preston kept this in mind when he conceived his book. In Lift Your Mood Now, he offers chapters that can be read in five minutes or less. Buy Now
A note from ICN Founder Jill Osborne - It all begins with you. The action you take, or choose not to take, will greatly influence how well you cope with IC. The more passive you are, the more challenging it will be. Your job is to be active, assertive and informed. I'm sorry but saying that you're not going to change your diet WHEN YOU KNOW THAT IT HURTS YOUR BLADDER is foolish. Be prepared to work at it. It won't be easy but it is accomplishable. I hope that your symptoms improve as much as mine have by trying some of the ideas above. Well, not try. I say DO IT!