Living with interstitial cystitis (IC) is a challenge that requires creativity, patience and determination. Because there is no cure for IC or an effective treatment that works for everyone, people with IC discover that they must take an active role in managing their lives. What follows is a variety of suggestions to help you live with IC on a daily basis, compiled from questionnaires completed by IC patients and their doctors, and publications available through the Interstitial Cystitis Association (ICA).
Many IC patients find that diet plays an important role in helping them control the condition and avoid flare-ups. Others note that what they eat or drink seems to have no effect on how they feel. If you have not tried modifying your diet, it is worth experimenting with different foods and beverages to see if this works for you. The most common suggestions from IC patients are:
• Avoid beer, wine, alcohol, caffeine, fruits, aged cheeses, yeast, cured or processed meats, artificial sweeteners and carbonated beverages. Substitute decaffeinated, reduced-acid, teas and coffees. Drink non-carbonated bottled water instead of tap water
• Follow a low-acid diet, eliminating such foods as tomatoes, vinegar, mayonnaise, ketchup, mustard, and fruits and juices, or products that contain these ingredients
• Avoid spicy foods and chocolate (which contains caffeine)
• Add fiber to your diet to promote regular bowel movements
• Do not smoke
• Eat several small meals instead of one large one
• Try Prelief®, a dietary supplement containing calcium glycerophosphate, which has been shown in research studies on IC patients to help reduce bladder pain and urinary urgency when used with acidic foods and beverages. For more information, call 1-800-994-4711 or go to http://www.prelief.com/.
• Try Cysta-Q® and Prosta-Q®, dietary supplements that have been shown in clinical studies to reduce the urinary urgency, frequency, and pain of IC and nonbacterial prostatitis. For more information, call 1-877-284-3976 or visit http://www.cystaq.com/ or http://www.prostaq.com/.
• Desert Harvest® Whole-Leaf Aloe Vera capsules have been shown in a clinical trial to reduce the pain, frequency, and urgency associated with interstitial cystitis, painful bladder syndrome, chronic pelvic pain, and nonbacterial prostatitis. Capsules are made in a special concentration not available in your local health food store brands. For full study results check http://www.desertharvest.com/ or call 800-222-3901 for more information and a free sample.
When you are in discomfort or pain, or tired from nights of disrupted sleep, you may find it difficult to exercise. IC patients with severe symptoms know that even the gentlest movement can make them uncomfortable. Yet many people with IC, even those seriously affected, do make the effort to engage in some form of exercise and report feeling better physically and psychologically as a result.
Try these gentle exercises:
- Low impact aerobics
- Walking
- Yoga
- Tai Chi
- The Body Recall system developed for the elderly and disabled, which includes a range of exercises that can be done in bed.
Most people with IC recognize that stress plays a part in exacerbating symptoms or bringing on flare-ups. Simply dealing with having IC and the accompanying symptoms can be a source of stress in itself. In addition to using regular exercise to combat stress and relieve pain, IC patients suggest:
• Learning basic relaxation techniques
• Using meditation tapes and/or visualization
• Learning self-hypnosis
• Receiving massages
• Psychotherapy to learn coping skills and stress- reduction techniques
Many IC patients find at least partial pain relief in simple strategies that can be done at home. These include:
• Placing a cold pack, heating pad or hot water bottle directly on the perineum (area between the anus and vagina in women, and anus and base of penis in men). Experiment to see whether cold or heat works best
• Taking a warm sitz bath, with or without Epsom salts – draw a small amount of water into the bathtub or use a plastic sitz bath (available at drug stores), which fits over the toilet
• Placing your knees against your chest, reclining with spread legs or adopting a squatting position
• Drink a glass of water mixed with one teaspoon of baking soda. Consult your doctor before taking if you are on a salt-restricted diet.
For most IC patients, the difficulty they experience engaging in and enjoying sexual activity is one of IC's more debilitating aspects. However, IC does not have to bring an end to your sex life. By taking a creative approach and remaining open to alternatives, many IC patients have found ways to be intimate and loving.
Instead of defining sex exclusively as intercourse, think of sex as a range of activities that can include oral-genital sex, massage, mutual masturbation, sharing fantasies, and simply holding and being held.
Use of antispasmodic or pain-reducing medications before sex and lubricants during intercourse can reduce discomfort. Avoid use of a diaphragm because it puts pressure on the bladder. To reduce pain the next day, take a 20-minute sitz bath and place an ice pack on the perineum for 20 minutes after sexual activity.
Working with a trained sexual therapist, especially someone with experience with the chronically ill and disabled, can be helpful.
Wearing clothes that are comfortable and non-restrictive can help provide basic relief for IC patients. Unfortunately, “women’s” clothing is not always designed with comfort in mind, but with persistence and ingenuity, women with IC can create a wardrobe that is both fashionable and serviceable. Here are some suggestions:
• Wear loose clothing such as full skirts and loose pants
• Avoid belts and clothing that put pressure on the waist and abdomen
• Try thigh-high stockings, cotton leggings or cotton tights
• Wear cotton underwear
• Wear low-heeled shoes or slippers to relieve lower back pain. Consider a soft rubbery sole to minimize impact. Use foam inserts in shoes for additional cushioning.
A number of IC patients have been extremely resourceful in seeking products which can make them more comfortable and help them sleep better. They suggest trying:
• A heated mattress pad
• A 2-3” foam mattress pad (egg crate style) for bed and a 3” foam square for chairs
• Cotton or cotton flannel sheets
• White, unscented toilet tissue
• White washcloths for genital cleaning and unscented white soaps
• Pediatric catheters for those who self-catheterize
Travel presents many challenges for people with IC, especially those who are severely affected. However, even these patients, with a little determination, can travel and make the adjustments necessary. Prepare for travel carefully. Try these suggestions to make things a little easier:
• For car travel, carry a portable potty or bedpan in the car. Some IC patients have even installed portable toilets in vans. Portable female urinals are also useful.
• For air travel, arrange ahead of time for an aisle seat near the toilets. Sit on pillows to minimize vibrations. Restrict fluids before and during flight.
• Women can wear absorbent pads and men can use a condom catheter while flying or traveling by other modes where access to a restroom is sometimes restricted.
• Try not to travel during peak seasons when things are more hectic and unpredictable.
• Find out in advance the location of restrooms along your route. Some cities have guidebooks that list them. Check your bookstore.
One of the greatest problems for people with IC in the US is the lack of public toilets. In order to gain access to restrooms in restaurants and other public places, you may need to be assertive.
These steps may help:
• Carry the ICA’s Restroom Access Card, which is available through our Resource Materials Guide.
• Wear a Medic Alert bracelet that you can show if you are denied access (http://www.medicalert.com/).
• Apply for a handicapped parking sticker if you are severely affected.
Many IC patients have explored alternatives to the traditional medical treatments and have found relief from their symptoms. It is important to approach such treatments with an open mind and to be realistic about how much improvement to expect. Treatments that IC patients have used with success include:
- Acupressure, acupuncture and massage therapies
- Biofeedback, mind/body techniques
- Chiropractic treatments
- Homeopathy >Nutritional and herbal therapies
;
- Bladder Retraining Program
The ICA Resource Materials Guide offers an array of self-help literature. This guide may be found on the ICA’s Web site at: http://www.ichelp.org/ or as an insert in our quarterly newsletter, the ICA Update.
Finding some action you can take – in helping support the fight to find a cure for IC or improving your own situation – can make a difference in helping you maintain a positive attitude about yourself and your body. Here are some final thoughts:
- Join the ICA if you have not already done so. By doing so you will be able to learn all about IC, including the latest research and treatments, and you will be helping to fund much-needed IC research.
- Read books on living with chronic illness to help you to understand its dynamics.
- Find the right doctor – one who is not only knowledgeable about IC, but also supportive, interested and innovative in finding ways to help you. Prepare for your doctor’s visits. Write down all of your questions and symptoms in advance.
- Educate doctors, others in the health professions, family and friends about IC.
- Write your senators and representatives to encourage them to support funding for research on IC and women’s health issues.
- If you are unable to work, apply for Social Security disability or private insurance disability benefits. See the ICA’s Resource Materials Guide for detailed information on how to make a successful claim.
As anyone with IC knows, no one strategy for pain relief or coping with daily life is a cure-all. Techniques for controlling symptoms, such as modifying diet, may be effective at some times and not at others. It is important, even in the most difficult periods, to remain flexible, be creative and to continue to try a variety of approaches to managing IC. The first step in gaining control over IC is learning how to help and care for yourself.