Patient Resources for Interstitial cystitis (IC)

By Kyle Ramsey

Posted:5/24/10

What is IC?

Interstitial cystitis, or as it often referred to, IC, is a condition that consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency (feeling a strong need to go). It can also be referred to as:

• painful bladder syndrome (PBS)
• bladder pain syndrome (BPS)
• hypersensitive bladder syndrome (HBS)

Patient Resources

Although there may not be a cure for IC at present, there are many ways methods of coping with the condition. This comprehensive list of small changes may help ease pain in day-to-day life.

Eating with IC

There is little material research on the effect food has on interstitial cystitis. However, many people with IC report that certain foods appear to irritate their bladder. To this end, they attempt to alter their diets to prevent flare-ups.

Research links a handful of foods and drinks to IC flare-ups, including:

• Coffee, tea, soda, alcohol, and citrus juices including cranberry juice

• Foods and drinks with artificial sweeteners (aspartame and saccharin)

• Hot peppers and spicy foods

However, there appears to be great individual variation in the effect of foods and drinks on IC symptoms. In this regard, patients must alter their personal preferences as per food choice. Keep in mind that patients have reported to experience flare-ups with apples but apple sauce for example may be enjoyable to them. To track these trigger foods, it is recommended to keep a diary as to document flare-ups and symptoms.

Many people with IC note worsening of symptoms with foods, drinks, medicines, and supplements containing preservatives and artificial ingredients and colors—such as benzyl alcohol, citric acid, and monosodium glutamate (MSG). If you have milk allergies or are lactose intolerant, your IC symptoms may worsen when you drink milk and eat dairy foods.

Diet modification is the first line of defense for patients struggling with interstitial cystitis or painful bladder syndrome (IC/PBS). Since sensitivity to various foods can vary among individuals, it is important to determine your personal trigger foods.

Finding the Right Doctor

Managing any chronic illness depends, in part, on your choice of doctor. In this regard, interstitial cystitis (IC) is no different. A urologist is a doctor specializing in bladder diseases. Some gynecologists and urogynecologists (women’s health doctors) also treat people with IC.

Involving a physician who specializes in treatment of your type of illness beyond that of a general physician is important to your quality of care. Look for a doctor who has experience taking care of people with IC. When you meet the doctor, decide whether you would be comfortable discussing personal issues such as sexual relations and urination problems.

Your doctor will work with you to decide on a treatment plan. To help you make informed decisions, pick a doctor who will discuss a range of treatment options with you. You may wish to talk with your doctor about including psychological support, pain management, physical therapy, and stress management in your IC treatment plan.

It’s your right to change doctors, consult other physicians, or seek second opinions. If you find your physician unsatisfactory, do not allow your health and well-being to suffer.

Exercise

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
• Tai Chi
• Pilates for IC
• Walking
• Yoga
  Learn more about exercise and IC.

Stress

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.
• Going to psychotherapy to learn coping skills and stress reduction techniques.

Smoking Cessation

Cigarettes irritate the bladder and may worsen IC symptoms of frequency and urgency. Constant coughing, often a result of long-term smoking, puts pressure on the abdominal area and may heighten pain associated with the pelvic floor muscles. Bottom line, quitting smoking may help reduce the severity of your IC symptoms. A study done in China about the prevalence of IC in women (Neurourol Urodyn. 2008 Jul 31) found that smoking was correlated with IC symptoms. There are lots of online resources about quitting smoking. Check out the American Cancer Society and the National Cancer Institute for more information.

Sexuality

For some 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:

• 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 antispasmodic or pain-reducing medications before sex and lubricants during intercourse to 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.
• Try working with a trained sexual therapist, especially someone with experience with the chronically ill.

Learn more about IC and intimacy.

Clothing

Wearing clothes that are comfortable and non-restrictive can help provide basic relief for IC patients. Create a wardrobe that is both fashionable and serviceable, by:

• Wearing loose clothing such as full skirts and loose pants.
• Avoiding belts and clothing that put pressure on the waist and abdomen.
• Trying thigh-high stockings, cotton leggings, or cotton tights.
• Selecting cotton underwear.
• Wearing 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.

Travel

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.

Restroom Access

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 for through the ICA Resource Materials Guide.
• Wear a Medic Alert bracelet that you can show if you are denied access.
• Check out restrooms on the go.
• Apply for a handicapped parking sticker if you are severely affected.

Create a Pill Card

Many people have trouble keeping track of their medicines and remembering when to take them. A pill card is a simple, visual way to show all of the medicines that a person needs to take on a regular basis.

There are also online tools to help you keep track of your medicines. Simply input your medicines, dosage, and when you take them and you can print off a paper schedule to take with you, have voice reminders sent to your cell phone or home phone, or have reminders sent to your email when it's time for your next dose. The service listed below is free.

•  MyMedSchedule

The Agency for Healthcare Research and Quality (AHRQ), a Division of the US Department of Health and Human Services (US HHS), developed the following Pill Card Tool. The pill card uses pictures and simple phrases to show each medicine, its purpose, how much to take, and when to take it. FYI: medicines taken "as needed" should not be included on the pill card since they do not follow a regular daily schedule.

AHRQ’s easy-to-follow instructions

No one strategy for 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. Even in the most difficult periods, try to remain flexible, be creative, and test a variety of approaches to managing IC. The first step in gaining control over IC is learning how to help and care for yourself.

On a side note, there is a monthly poll on the front page of the ICA website ( www.ichelp.org) which collects information from patients about living with IC.

SOURCE: Interstitial Cystitis Association (ICA)  http://www.ichelp.org