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Interstitial Cystitis / Painful Bladder Syndrome

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Surgery continued...

A third method to reroute urine involves making a new bladder from a piece of the patient's colon and attaching it to the urethra. After healing, the patient may be able to empty the newly formed bladder by voiding at scheduled times or by inserting a catheter into the urethra. Only a few surgeons have the special training and expertise needed to perform this procedure.

Even after total bladder removal, some patients still experience variable IC / PBS symptoms in the form of phantom pain. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and after seriously considering the potential outcome.

Are there any special concerns?

Cancer

There is no evidence that IC / PBS increases the risk of bladder cancer.

Pregnancy

Researchers have little information about pregnancy and IC / PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC / PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.

Coping

The emotional support of family, friends, and other people with IC / PBS is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. See the Interstitial Cystitis Association of America's website under "Support Groups" to find a group near you.

Hope Through Research

Although answers may seem slow in coming, researchers are working to solve the painful riddle of IC / PBS. Some scientists receive funds from the Federal Government to help support their research, while others receive support from their employing institution, drug pharmaceutical or device companies, or patient support associations.

NIDDK's investment in scientifically meritorious IC / PBS research across the country has grown considerably since 1987. The Institute now supports research that is looking at various aspects of IC / PBS, such as how the components of urine may injure the bladder and what role organisms identified by nonstandard methods may have in causing IC / PBS. In addition to funding research, NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.

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