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
When 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.”
While 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.
Finding the right treatment
Once 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,” Anderson said. Hanno said he doesn’t limit his treatment options when it comes to older patients. While he is careful to be aware of the person’s needs and history, he also said he’ll do more invasive treatments like instillations, Interstim and TENS units if necessary. “If they don’t respond to standard therapies, I don’t think it’s right to withhold more aggressive treatment for the elderly if they’re interested,” Hanno said. With that said, though, Hanno also mentioned that perfect is the enemy of good in that if a patient’s symptoms are minor enough that they aren’t impacting daily life, then more aggressive treatment isn’t necessary.
Both Hanno and Griebling agree that all patients should start with self-help strategies like diet. Daniels, who has spent the last year focusing on more alternative treatments anyway, said that diet has been a big help to her. Anderson also found that diet changes helped his mother. After Anderson’s mom broke her hip, getting up to go to the restroom became even more difficult. Though she had a commode by her bed, Anderson’s mom still struggled, especially at night. He suggested she try working with her diet. “As soon as she stopped the cranberry and tomato juice, things got significantly better,” Anderson said. “The diet absolutely helped.”
Griebling pointed out that older patients can take longer to get relief from conservative or more invasive treatment,so patience is a necessity. “Sometimes we do need to do more for older patients because they often don’t respond as readily to some treatments,” he said.
Maintaining quality of life
While diagnosis and treatment are the first steps to living with IC for any patient, maintaining a quality of life is also important, especially for older patients who can’t get around as easily. Anderson said his biggest concern with his mother happened when she was placed in a long-term care facility after breaking her hip. When she was calling for the bedpan multiple times throughout the night, the nurses got frustrated with her and told her she’d have to learn to “hold it.” “They were just going to torture her because they didn’t know,” Anderson said. At his mom’s request, he printed out information about IC and posted it on her wall. Weiss, who took 32 years to get diagnosed, also suggested printing out information for caregivers when necessary. She is helping her mother through cancer right now and said the best thing for older patients in particular is to have an advocate.
For Roanoke, her advocates come in the form of her husband, best friend and now her physical therapist who treats her pelvic floor dysfunction. “I brought my husband in with me,” she said. “He was very helping in dealing with the doctor and also reminded me of things the doctor said during the interview which I had forgotten. It should definitely be a three-person interview.”
Along with having a support system in place, finding the right doctors also makes a difference. After Anderson’s experiences with his own IC diagnosis and then with his mother, he sees the importance of having a doctor informed about IC and making sure other doctors are familiar with the condition as well. “My biggest issue…is you’ve got to get the medical professionals aware of IC,” he said. “Even if my mom were the only person, I’d say it was a big deal.”
Other patients agree. Roanoke said patients should look for a doctor who is easy to talk to, who has credentials and who understands IC and its related effects. “Being as specific as possible with my symptoms seemed to work best,” Daniels said. She also said that finding a doctor to treat the entire patient would be nice. Though she hasn’t found that herself, yet, she still has hope. “I don’t think care providers give [IC] much credence,” she said. “I don’t think they worry about whether any medicines they give you will upset your bladder. Everyone these days seems to be so specialized. They only treat one part of you – not as a whole.”
Doctors like Griebling are working to change that. He said that often he will work with other specialists as well to make sure that the entire patient is being treated in order to maintain his or her quality of life. Anderson, whose mother passed away in July of this year from other medical complications, said other issues for family members to be aware of are when a loved one is in a long-term medical situation. During his mother’s final stay in the hospital, the staff kept wanting to remove her catheter without thinking of how difficult and impossible it would be for his mother to physically get up for the restroom as often as she would need to. He was concerned how the situation would go upon his mother’s discharge from the hospital as well. “You shouldn’t be releasing patients to go home without a plan so they can handle the urgency [and] frequency,” he said. In the meantime, older patients are continuing to find ways to live IC and carry on with their lives as best as they can.
* Some names have been changed in part or in whole
Managing Treatment Costs
No matter how we slice it, medical care is expensive. Appointment co-payments, testing fees and the cost of medications is often far too much for a senior to afford. Luckily, there are several options available. On our website, you’ll find a patient assistance program center where you can contact companies to receive medications for free IF you meet their income guidelines. Luckily, several medications also come in the far more affordable generic form, including both the antidepressants (i.e. amitryptiline) and antihistamines (i.e. hydroxyzine. You can learn more about the MANY therapies for IC in our ICN Treatment Center.
Paying for treatments out of pocket, without insurance, is almost impossible, particularly when the only FDA approved drug for IC (which has a fairly low effectiveness rating) can cost up to $500 a month. If you don’t qualify for patient assistance programs and cannot afford to purchase medications out of pocket, you might want to consider the OTC supplements commonly used by IC patients to reduce their symptoms (i.e. Cystoprotek, Cystaq, etc.). They each have research supporting their ability to reduce bladder symptoms and, interestingly, Cystoprotek has been found to be helpful for some patients with severe IC who have failed other therapies. Please talk with your doctor before trying any new supplement or treatment as they might react negatively with medication you are already taking.
You are not alone. Let us repeat this. You are really not alone. You have thousands of brothers and sisters with IC who, like you, have been scared, frustrated, tired and confused about their health. Luckily, you can find support in the ICN Support Forum. We have have message boards dedicated for patients Over the Age of 50 and 60!. Please join in and share your thoughts, worries, words of comfort, words of inspiration and, of course, your IC story!