Seniors With Interstitial Cystitis

If you’re like most seniors with IC, you’ve probably had bladder or prostate symptoms for years. It might have been some increased frequency during the day or night. You might have had what you thought were bladder or prostate  infections and taken antibiotics for years with little improvement. You may have also received many different diagnoses, such as: urethritis, honeymoon cystitis, urethral syndrome, trigonitis, prostatitis, overactive or a sensitive bladder before the confusing diagnosis of “interstitial cystitis” was made.

With time, it’s very easy to become used to symptoms which just aren’t normal. And, no, they aren’t the result of aging. We forget that a normal person only urinates 3-5 times a day. To us, going 12 times a day is normal. Getting up several times a night seems to be part of life.  Of course, we’re the expert at finding restrooms in our community. But, the hard reality is that many of us choose not to go out and do things out of fear of restroom access. I

The good news is that there is hope. We have excellent self-help strategies now that can relieve and reduce some of that daily discomfort. There are many treatment options available from OTC supplements to bladder instillations.

Senior Patient Stories

Senior WomanWhen Darlene Weiss* was 22 in 1969, she began having symptoms of what she thought was a urinary tract infection.  After numerous rounds of antibiotics didn’t help and doctors at the University of Chicago Hospital and Mayo Clinic told her that her symptoms were imaginary, Weiss decided to just live with the pain. The now 60-year-old, who lives in the suburbs of Chicago, finally got her diagnosis of IC in March 2001.  Her long journey of pain at last had an explanation to go with it. “After two of the most famous hospitals…just brush it off, who are you going to see after that?” Weiss said.  “There’s just nowhere to go.”

Weiss is just one of many older adults dealing with IC. Though her symptoms started early in life, others don’t have the same experience.  And all too often, older patients wait longer to see a doctor, attributing their symptoms of frequency, urgency and even pain to aging. Carol Daniels, now 60, is one of those patients.  In June 2003, she went on the Atkins diet.  Around the same time, she started having frequency and thought it was a result of the diet.  She continued to lose weight while her bladder symptoms continued as well. “I believed it was a ‘middle-age’ thing,” she said.

When she started having pain in October 2005, she knew it was time to see a doctor.  The first urologist she saw discounted IC completely.  “The urologist said, ‘I don’t believe that the condition of IC exists,'” Daniels said.  She next headed to a urogynocologist who diagnosed IC.  Daniels opted for more alternative treatment rather than the potassium test and instillations the urogynocologist recommended, but she at least had an answer for her symptoms.

Nancy Roanoke is another ICer who tried to delay a visit to the doctor, hoping that her symptoms would get better on their own.  The 63-year-old has always been athletic and enjoyed running and walking 10 miles everyday.  Then she got a urinary tract infection in July 2006 that seemed to trigger her symptoms.  She self-diagnosed IC after doing research and tried to manage the condition the best she could without going to a doctor.

“I was afraid to go to a urologist,” Roanoke said.  “[I] kept trying to cure myself.  I would be OK for a day or two then I would slip back to symptoms.” After the symptoms persisted and she had an episode of blood in her urine, Roanoke finally saw a urologist who diagnosed painful bladder syndrome, what her urologist considers to be a mild form of IC. “Age-wise, I felt that it made my condition scarier as when you get into your 60s, bad things can happen to you,” Roanoke said.  “In other words, the deck is stacked against you the older you get.”

IC Optimist Summer 2014While Weiss, Daniels and Roanoke were all in their late 50s or early 60s when they were diagnosed, some patients are even older.  Richard Anderson’s mom was diagnosed with IC in the middle of 2006 at the age of 86.  It all started when Anderson himself was diagnosed with IC in April 2006.  The more he learned about his own condition, the more he saw the same symptoms in his mother.  She had a urinary tract infection after intestinal surgery during the summer of 2005, but her symptoms didn’t get better – even with multiple rounds of antibiotics. Anderson encouraged his mom to speak with her urologist and gave her a two-page printout about IC.  His mom took the papers to her urologist who asked to keep them, because he didn’t know much about IC.  He was willing to work with Anderson’s mom, though.

Anderson said many of his treatments were older and, in Anderson’s opinion, inappropriate. “If it hadn’t been for me, her urologist would have probably hit her with 50% DMSO and done a lot of damage,” Anderson said. Instead, he talked with the urologist and gave him the formula for a rescue instillation developed by IC researcher, Dr. Lowell Parsons. Though all IC patients are different, regardless of age, leading IC researchers and urologists agree that IC has no age limits and can be diagnosed in older patients as well, though diagnosing and treating them may differ a bit.

Getting a diagnosis

Dr. Tomas L. Griebling, associate professor and vice chair of the Department of Urology at the University of Kansas and faculty associate of The Landon Center on Aging, said that urgency, frequency and urge/incontinence are more common in older adults.  This means a doctor will need to establish a correct diagnosis of IC through a combination of clinical symptoms and examination. “Most patients with IC have some component of pain with their symptoms,”Griebling said.  “That often can help begin to differentiate people.”

Griebling, who was also president of the Geriatric Urological Society, said he presented research a couple of years ago looking at older IC patients. “We thought that in general older patients seem to have somewhat worse symptoms at the time of presentation as compared to younger patients,” he said.  “And [they] often don’t respond quite as well or as quickly to therapy…Many patients will have symptoms for a long period of time before they get diagnosed.”

Dr. Phil Hanno, professor of urology at the University of Pennsylvania, said that diagnosing IC in older adults also requires eliminating other possibilities like overactive bladder and infection.  He pointed out that the older the patient is, the more bacteria is present in his or her urine.  Doctors must work to determine whether that bacteria is causing the symptoms or if the cause is from something else, like IC.

Griebling said that he will do a cystoscopy with hydrodistension for older patients to help with diagnosis, as long as the patient is a good candidate for minor surgery. 

Finding the right treatment

Interstitial Cystitis Treatments AUA GuidelinesOnce the patient is diagnosed with IC, then it’s time to consider treatment.  Both doctors agreed that treating an older patient is both different and similar to treating a younger patient. “My practice for older patients is actually very similar to younger patients,” Griebling said.  “What I generally do is tailor the therapy specifically to each individual patient.”

Both Griebling and Hanno start with more conservative and less invasive treatments for IC patients of all ages.  “Conservative management of the elderly is a very good first step, because it has no side effects,” Hanno said.

Prescription medicines in particular can have varying side effects in older patients.

Both Hanno and Griebling mentioned that interaction with other prescriptions is also a concern.   Griebling pointed out that Elavil and other tri-cyclical antidepressants have been successfully used to treat IC, but it can cause constipation and confusion in older adults, so it must be used with care.  Hanno mentioned that Elavil shouldn’t be used for cardiac patients. Anderson found a similar situation with himself and his mother.  He was prescribed Atarax and felt better within two weeks.  When his mother tried Atarax, however, she felt the tranquilizer properties of the drug much more distinctly and was unable to function while taking the medicine.

“Procedures are just more difficult to do when you’re older,”