Question: My wife of 42 years was diagnosed with interstitial cystitis. The doctors she consulted did not share with us their suspicions, but rather subjected her to months of tests and x-rays while leaving her in pain. I am angry because I feel there was a lot of neglect and that the local medical system was milking all the insurance they could. That being said, she was told that her condition was not curable, and that the most that could be done would be to manage it. Would you please share with us the facts on interstitial cystitis? Is there hope for her to have a normal life?
Dr. Hibberd's Answer:
Interstitial cystitis is a non-infectious inflammatory condition of the bladder. 90% of cases occur in women. It is initially asymptomatic, but symptoms appear as damage to the bladder wall proceeds unchecked. Diagnosis is difficult without excluding other underlying curable conditions first; hence your slew of studies. It does indeed have no cure. With treatment, 90% of patients improve. Its causes are unknown, but appear to involve the loss of the protective layer of mucin from the bladder wall that is exposed to urine.
Our bladder is the collecting bag in the front of our upper pelvic area that serves as a reservoir for urine excretion from both of our kidneys. When the bladder loses its protective lining, the next cell layer becomes exposed and inflamed. Symptoms of bladder wall irritability are frequency and urgency with spasms, and are seen in the absence of any definable infectious process. Pelvic pain may be present. When persistent, bladder scarring occurs along with a loss of bladder elasticity and capacity. Incontinence of urine is often seen in progressive cases.
Treatment is difficult and involves dietary as well as topical bladder treatments. Surgery is not uniformly successful, but cystoscopic bladder ulcer resection may help some. Sacral nerve root stimulation has been used with some degree of success. Bladder removal and urinary diversion is provided as a last resort for those with unrelenting pain. No non-prescription supplements have been shown to reliably prevent or improve this condition.
Lifestyle changes may be very helpful. Avoid tobacco products, spicy foods, alcohol, and foods high in potassium, which include fruits, tomatoes, bananas, chocolate, and caffeinated drinks.
Oral treatments are useful and include pentosan (a heparin-like product that helps restore the bladders protective lining), and antihistamines.
A number of topical bladder lining treatments are provided by installation of various solutions into the bladder (i.e. BCG, DMSO, pentosan solution, etc), usually after a cystoscopy are used with varying degrees of success, so allow your urologist to offer these early.
Bladder pain is managed by low doses of anti-depressants (often tricyclic agents such as imipramine) and NSAID medications.
Interstitial cystitis is associated with an increase risk of bladder malignancy (remember that chronic inflammatory states often precede malignant cell transformation). Regular cystoscopic surveillance and biopsy for malignant change is advised.
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