What Is Interstitial Cystitis?
SIMPLY stated, cystitis is inflammation of the urinary bladder. It is more common in women than in men. However, there are many forms of cystitis, with a variety of causes.
What are some common symptoms? The need to urinate very frequently along with dysuria, discomfort when voiding, such as an intense burning sensation. But what about chronic interstitial cystitis (IC)? How is that different?*
Dr. Susan Keay, an expert in the field, admits: “IC is very difficult to diagnose, and even more difficult to treat.” She adds that this disease “can mean years of suffering. IC is an extremely painful, long-term, life-style altering problem that can continue for decades.” Unfortunately, for a long time, many doctors failed to acknowledge this disease and implied that it was all in the patient’s mind. Yet, as one doctor states, “justifying a patient’s symptoms by making a diagnosis of IC is often therapeutic.”
One report states that the number of people in the United States who have IC is over 700,000, “which is 50 percent greater than previously reported.” It is now understood that some men may be diagnosed as having a prostate problem when, in fact, it is IC. The disease, of course, indirectly affects many people—especially the close relatives and others who live with these patients who are in almost constant pain. Obviously, the illness reduces the sufferers’ effectiveness both in the home and in the workplace. In fact, many have to give up work. Sexual relations can also be very painful for the patient.
Since there is as yet no cure, doctors’ efforts are all aimed at reducing the painful symptoms. What are some of the treatments?
Relief, Not a Cure
A primary treatment recommended by Dr. Grannum R. Sant, of Tufts University School of Medicine and New England Medical Center, is the use of antihistamines, tricyclic antidepressants, or pentosan polysulfate, which are taken orally.*
Some doctors recommend hydrodistension, described in the preceding article. Each treatment can give relief for a few months and possibly up to a year. Then there is intravesical (within the bladder) dimethyl sulfoxide (DMSO) therapy. DMSO, which is approved by the U.S. Food and Drug Administration, can reduce symptoms for up to two years. However, Dr. Kenneth Peters, a urologist, has reservations about this treatment, since it can cause severe blood clots and other problems.
A recent treatment used in pilot studies by Dr. Peters involves the use of intravesical Bacillus Calmette-Guerin (BCG). “BCG is a weakened strain of the tuberculosis bacteria,” he writes. It appears to work by boosting the immune system. A controlled trial demonstrated a 60-percent clinical response to this treatment. The patients’ progress was followed for over two years. The result? Dr. Peters says that 90 percent of those who responded to the treatment “continued to have marked clinical improvement in both pain and frequency symptoms.”
Some patients get relief from the drug Elmiron. According to Dr. Raymond Hurm, the drug “actually helps replenish the lining of the bladder.” It takes time, but as one patient said, ‘with Elmiron, it’s easier to live with my bladder disease.’
Another treatment in experimental use is Cystistat, or hyaluronic acid. “This medication is instilled directly into the bladder and is thought to work by replacing the defective GAG [glucosaminoglycan] lining of the bladder. . . . Clinical trials are now  beginning in the U.S. Efficacy is not known at this time.” It has been approved for use in Europe but has not yet been approved in the United States.
Beth Getz, who is a registered nurse and a support-group leader for patients with IC, wrote: “Sometimes patients are reluctant to ask physicians about alternative therapies . . . , thinking that it might suggest that the traditional care they are receiving is inadequate. Today, most urologists who treat patients with IC believe in multimodality approaches, including alternative therapies, as long as these treatments do not put the patient at risk.”
A different line of approach for those with chronic pelvic pain is enrollment in a pain clinic. Treatments can include transcutaneous electrical nerve stimulation, described in the preceding article; nerve blocks; acupuncture; psychological counseling; and functional restoration programs.
Awake! spoke to Dr. Peters, quoted earlier, about the problems of patients who need to urinate 40 or 50 times a day. He recommended the use of a sacral nerve stimulator, which can reduce the visits to the toilet to about six a day. For a patient to use what is called in the United States the InterStim Therapy system, a little apparatus is implanted in the abdomen. It sends mild electrical pulses to the sacral nerve, which controls the bladder.
Surgery, considered the final solution, is no guarantee of success. “The results of bladder surgery for IC are variable,” says Dr. Sant. “Many patients who undergo cystectomy continue to report persistent suprapubic and pelvic pain, even after surgery.” Therefore, the advice that experts give is, Do not rush into surgery to remove the bladder except as a last resort and after very careful consideration.
Hopes for the Future
The Interstitial Cystitis Association, of Rockville, Maryland, U.S.A., states: “While it is unlikely that researchers will find one single cure to help all IC patients, it is very likely that more and more patients will be helped through the development of new diagnostic techniques, new treatment options and new treatment combinations. Once the cause (or causes) of IC are clearly understood, we will be much nearer to a cure (or cures).” Millions of IC patients worldwide will be happy to hear that!
Another form of IC is ulcerative IC, also known as Hunners. It is identified by patches or ulcers that affect all the layers of the bladder wall.
Awake! does not endorse any of the treatments discussed. In all cases we recommend that you consult your own physician regarding any course of treatment or medication. Awake! tries to inform the reader of the medical options that are available according to doctors and other professionals.
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Experts say that the emotional support of family, friends, and other IC sufferers helps the patient with IC a great deal in coping with the ailment. And patients who study their disorder and take an interest in their own care tend to make better progress.
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Foods to Be Avoided
Although there is no clinical scientific evidence linking diet to IC, many doctors and patients have noted some relationship. Dr. Kenneth Peters, a urologist, says that some patients are sensitive to certain foods and that each one should assess which foods worsen the symptoms. He suggests that caffeine and alcohol be eliminated. Tomatoes and citrus fruits also seem to be harmful for the IC patient. However, it is important that the patient maintain a varied and well-balanced diet. Some IC patients report that they have the least trouble with rice, potatoes, pasta, vegetables, meat, and chicken. Also, by drinking plenty of water, the patient dilutes the acid content of the urine and thus reduces irritation to the bladder wall.
The following is a partial list of foods to avoid.
Urologic Nursing, April 2000, Volume 20, Number 2