Date: June 22, 1999
Interstitial Cystitis Network - Chat Log (© 1999, www.ic-network.com)
Topic: A Urology Nursing Perspective of IC
Speaker: Mary Eno R.N., University of Iowa, USA
<icnmgrjill> Welcome everyone to the ICN chat for June 22, 1999. Tonight we welcome urology nurse Mary Eno as our guest speaker. May currently works with the University of Iowa. She has worked in Urology for the past thirteen years. She currently assists in two national IC research studies. Last month, she was a featured presenter at the SUNA conference (The Society for Urologic Nursing Associates) in Dallas, TX, where a significant proportion of the conference was dedicated to IC education. Tonight, we have a similar presentation to the one Ms. Eno presented at the conference and then we'll take Q&A from the floor.
<icnmgrjill> Mary, welcome to our chat tonight! Thank you for visiting the ICN this evening!
<MaryRn> Thank you and I am happy to be here!
-------"Interstitial Cystitis: An Outline" ---------
What is interstitial cystitis?
- Condition of unknown etiology and is one of the most disabling nonmalignant disorders seen by the urologist. It is an uncommon and devastating disease.
- Described as a chronic inflammatory condition of the bladder wall. Patients present with pelvic pain, urinary frequency and urgency of up to 70 times per day.
Who is Affected With Interstitial Cystitis?
- An estimated 700,000 Americans have Interstitial Cystitis
- Ninety percent are women
- Average age of onset is 40
- Twenty-five percent are under the age of 30
- Majority of Interstitial Cystitis patients are over age 18
History of Possible Causes of IC
- (1870) Sir James Simpson: Spontaneous rupture of the bladder lining secondary to ulceration.
- (1887) Skene: First to name the condition Interstitial Cystitis (IC)
- (1896) E. Hurry Fenwick: Simple solitary trigonal bladder ulcer presenting with hemorrhage in 2 men and 1 women
- (1914) Guy Hunner: Predominance in women, location within the dome and lateral walls of the bladder and the presentation with pain versus hemorrhage
- (1920-30) Belief that IC and Hunner's ulcers resulted from bacterial infections reaching the bladder via the bloodstream or by local spread
- (1940-50) Belief in other causes, such as nutritional deficiency, perivesical lymphatic occlusion, hormonal influences, extrinsic pelvic infection and ischemia, allergy and infection and mast cells
- (1960-70) Belief that IC could be a collagen disease, involve organ-specific anti-bladder antibodies and/or a neuro-vegetative-vascular disturbance
- (1980) Belief that IC is a defective surface GAG layer, antibiotics,
- (Present) Belief that IC could involve an Epstein-Barr viral infection and/or fastidious bacteria Current research is actually looking at genetics and the DNA make up of the bladder tissue lining and I do believe that they are looking at inflammatory aspects of the disease. We've come far in the last 100 years and that the researchers are getting closer and closer and closer to solving the mysteries of IC.
How is Interstitial Cystitis Diagnosed?
- Patient Interview and History
- Physical Exam
The Patient Interview and Typical Story
- Patients often report unremitting urinary frequency and urgency
- Patients may have suprapubic pain and pressure when the bladder is full which voiding may relieve
- Nocturia is a common experience (urination throughout the night)
- Dyspareunia is painful intercourse.. and is very common among IC patients
- Onset is acute and most can pinpoint an exact date or time period when their problem began
- Similar to acute cystitis, many are treated with multiple antibiotics in the past before being referred to a urologist
- Suffer with symptoms for anywhere from 3 to 7 years before the correct diagnosis is made
- Endure several evaluations and consults and perhaps even have surgery before being diagnosed with IC
- The average IC patient has seen 3 to 5 physicians before arriving at proper diagnosis
Additional Relevent History
- Allergies, autoimmune disorders, and gynecological and gastrointestinal problems appear more commonly in IC patients
- Many patients notice a fluctuation in their symptoms relating to their ovulatory cycle
- Patients often report a history of childhood bladder problems
- Yet no two patients are alike in their descriptions and their tolerance to their symptoms
During Physical Examinations
- Abdominal, pelvic and neurologic exams are usually unremarkable
- Suprapubic tenderness or bladder tenderness may be found on bimanual exam
- Must exclude vaginitis, urethra diverticulum and vulvitis. These can mimic IC symptoms but require different therapy.
- Microscopic hematuria and pyuria may or may not be present
- By definition, the urine culture must also be negative
- Vaginal and urethral cultures must also be negative for gonorrhea, fungus, Chlamydia and Trichomonas
- Voided, catheterized or bladder wash cytology's are usually performed to rule out other diagnosis
- Currently, this is the most important diagnostic tool. However, it may change in the future.
- Rules out other diseases to rule in IC
- Anesthesia allows for sufficient distention to enhance visualization of pinpoint petechial hemorrhages and/or Hunner's ulcers
- Includes the hydrodistention followed by refilling and observation. Through anesthesia the physician has the opportunity to carry out a therapeutic hydrodistention and perform bladder wall biopsies
- Classic description of IC is a reddened bladder with a reduced capacity and fissures and scars that crack and bleed after distention
- Described also as small bleeding raspberry-like spots; the quantity and exact locations are variable
- The trigone is usually spared, and predominantly the posterior wall, dome and lateral walls are affected
Laboratory, Radiographic Studies and Urodynamics
- There is no commonly accepted serologic test to diagnose IC, although some may be in development, such as the recently discovered GP51 studies.
- There are no radiographic studies to diagnose IC
- Because most patients are evaluated by several physicians before being diagnosed with IC, frequently they have under gone voiding cystourethrograms, intravenous pyelograms, CT scans and even MRI's
- No specific urodynamic findings in IC patients
What is the Treatment of Interstitial Cystitis?
- Diagnostic hydrodistention under anesthesia
- Oral Medications
- (Advantage of oral therapy are they are not invasive, painless and simple to administer)
- Tricyclic Antidepressants
- Calcium Channel Blocker
- Synthetic Sulfated Polysaccharide
- Treatment of Mild to Moderate Pain (Non-Opioids)
- Nonsteroidal Anti-inflammatory drugs
- Treatment of Moderate Pain (Opioid Therapy)
- Treatment of Severe Pain (More Opioids)
- Fentanyl Transdermal Patch
- DMSO Cocktail: DMSO, Prednisone, Sodium Bicarbonate
- Silver Nitrate/Heparin
- (Treatment of last resort-it is invasive and irreversible)
- (Patients may or may not improve and can even do worse)
- augmentation cystoplasty
- urinary diversion
New Innovations for Treatment of Interstitial Cystitis
- Bladder Instillations
- Peripheral Nerve Stimulation
How Does Interstitial Cystitis Impact Quality of Life?
- IC greatly impacts patient's lives far beyond the symptoms of pelvic pain, frequency and urgency
- Physical, social, and emotional well-being are greatly influenced, leading to social isolation, unemployment, disability, depression and even suicide
How Does Interstitial Cystitis Impact Quality of Life?
- Affects their personal, family and professional lives. Many people with IC find travel difficult or impossible, some must work reduced schedules, and others are forced to claim disability. Many refrain from sexual intimacy for fear of exacerbation of their IC symptoms. Many do not participate in sports and leisure activities, and others are unable to fulfill important family obligations
- Patients Face many challenges to conquer their disease
The Future for those Affected with Interstitial Cystitis
- Spite of new treatments and pain management techniques, too many patients are misdiagnosed and many are diagnosed and are not helped by any treatment. I believe there must be a relationship between ones' belief about illness and the psychological adjustment of the chronically ill patient.
- The ICA, ICN and NIDDK strive to keep patients informed and through continued research they are maintaining a united front. It remains a challenge to health care workers and researchers. With determination, talented researchers, and sufficient funding, I believe the cause and cure of IC will one day be found.
My heart goes out to those of you with IC! While there are times when you may feel that you are alone or that your doctor does not understand it, I want you to remember that the urology nurses do want to help you!
<icnmgrjill> Thank you Mary for that presentation. It was very helpful for us to see the information that you presented to your peers and to hear some of the "clinical" basics that we, the patient, aren't always aware of. So.. first things first (1) What advice can you give an IC patient who is trying to work effectively with their doctors and nurses? What do we do wrong?? and what do we do well?
<MaryRn> Let's start with what IC patients do well. IC pts are well informed for the majority. You get good information that you bring to the physicians attention. think a physician will respond better to patients who are well informed. Patients who are not educated about IC are much more challenging to treat!
For example, many clinics have a few patients who are totally passive. They do not comply with the treatments recommended. They do not get involved in their medical care. They may not show up for doctors visits and then, in an emergency, they call, but its harder for us to care for them. Some patients just feel that they have to live just the way that they are and that's a difficult obstacle for any doctor or nurse to overcome.
The other thing good about the IC patient is that once it is diagnosed, there is a sense of relief and now the patient can focus on just getting better. Patients want to get well. I truly believe that they want to get well.
<icnjill> Question #2... What is the hardest part about diagnosis from your perspective? What advice do you have for patients who are looking for a diagnosis??
<MaryRN2> Perserverance! People don't seem to have difficulty in the diagnosis part. Just through the conversation with patients, I often learn that they possibly have IC through frequency or urgency. That is one of the successes of our IC clinic. We listen well to our patients, especially the nurses!
<icnjill> Matts Mom wants to know if you have seen a correlation between IC and Epstein Barr syndrome in your clinic??
<MaryRN2> On a few occasions, yes! They are usually in the process of getting a workup for epstein barr before or after they come to see our clinic for IC. It is already scheduled! But the percentage is not great.. just in a few occasions!
<icnjill> Here's an anonymous question from the floor. When is the right time to call the doctors office?? Some patients find that when they need help and make the phone call, the doctors office isn't as receptive as they could be. Any suggestions?
<MaryRN2> Yes.. very good point. Once they are diagnosed, there really should be a contact person in the office. In our clinic, we have two contact people who handle the situations differently than regular staff. We know our IC patients and we go directly to the staff physician, as well as other relevant people, to get the patient proper information care . I have a physician that I can easily go to with questions. Though he is busy, he will always take the time and make recommendations. In general, try to learn who your IC contact person is. If there isn't one, ask for one and then work exclusively with this person.
One other point. Often times, the IC patient can be very urgent with their calls and may get upset if they are not addressed quickly. It's important to realize that we are handling many phone calls simultaneously and, sometimes, we have to place priority on patient who is more severely ill. So, be patient with us. There are times when other patients need our attention and are struggling too. We do our best to get to you all and, with time, we will!
Remember, there are compassionate nurses and physicians out there. Our clinic is an example of one that is very IC friendly! Keep looking until you find one!
<icnjill> Here's another question! Patients often report discomfort after treatments and catheterization. What advice can you give to an IC patient who dreads being catheterized or who experiences discomfort afterwards?? Any suggestions for self help??
<MaryRN2> The most important thing for the patient to do is to relax. We also use a lidocaine jelly on all of our ic patients that helps numbs the urethra prior to the procedure. We also use small catheters and, at times, latex free catheters and gloves. We suggest that patients take bathes to remove the iodine soaps and jellies after the procedure. Also, a lot of patients have vestibulitis and vaginitis, which can complicate the catheterization. Remember, during your regular visits, catheterizations are very short in duration and comfortable to tolerate. So.. don't let a fear of catheterization stop you from having a treatment.
<icnjill> Good point Mary. One of the other things that patients talk about is how to urinate the first time after they are catheterized. Some of us dribble it out because it does sting a bit and others drink a glass of water and just "power through" that first urination. Any suggestions?
<MaryRN2> Sometimes catheterizations can give patients without IC spasms because the bladder knows that there was a foreign object in side and there are current degrees of that among our patients.
<icnjill> Jo has the next question and this is a great question! She wants to know "when should we call the doctor if we notice blood in our urine?"
<MaryRN2> Well, we've had patients report blood in their urine but usually very little blood. It depends upon the degree and amount. If it is grossly bloody, i.e. thick and red with clots, which IC patients RARELY present with (I can't think of one right off hand which has presented this) then you should call the doctor. But, if it's just a trace, are you even sure that it is blood? Sometimes patients just haven't drunk enough fluids and their urine gets darker
<icnjill> Carol L has the next question. She wants to know if you have ever used Capsaicin in your clinic? a capsaicin bladder instillation?
<MaryRN2> No.. we haven't used that in our clinic
<icnjill> We have a question about constipation! Again.. anonymous. We all know that for IC patients, constipation is somewhat uncomfortable. What suggestions do you give to patients who are taking meds that cause constipation.
<MaryRN2> They need to increase their fiber. Drink at least 2 liters of fluids per day, firmly spaced out between the day and evening and to remain active to the best of their ability.
<icnjill> Lisa G wants to know if your clinic has used pelvic floor biofeedback and myosfascial trigger point therapy?
<MaryRN2> No, we haven't as yet. I really believe that it is in our future, more the pelvic floor biofeedback. However, in one of the studies I'm doing in research, Percutaneous Nerve Stim Study (SANS), I think that this may become a future treatment of IC as a form of retraining the pelvic floor.
<icnjill> Lisa has an add on questio. She wants to know at what point in patient care do you determine that this could be beneficial?
<MaryRN2> At this point, when other treatments have failed. But remember, a year from now, I might be answering that question differently!
<icnjill> Can you tell us more about what makes doctors angry. What can we avoid doing? What are the doctors hot buttons?
<MaryRN2> That's a real real good question. Urgency in the phone call and how you come across to the physician can be liabilities especially if you don't follow their original recommendations. The "I want to go back on that afterall" answer is annoying! It's important not to let things get out of hand. If you start noticing that you are getting worse, call and make an appointment. Don't wait until you are in a horrible flare. That's where finding that contact person is really helpful to the patient physician relationship.
<icnjill> One of the things that I've noticed as a support group leader is that some patients just seem destined to doctor shop.. that, within six months or so, the doctor says "I don't want to treat you" and the patient has to move on. I'm thinking of one patient in particular who had such a horrible phone attitude that she alienated the office staff within the first week and, eventually, the doctor.
<MaryRN2> Yes, just last week, I had patient who had a few choice words about their care because their pain was out of control. Yet, she did phone me three days later and apologize. Remember, pain makes people angry. Patients can have good days and really bad days. If you're having a bad day where you are really angry about life.. about IC.. take a step back and a few deep breaths before you talk with your nurse. They want to help you and you need to clearly communicate to them what is going on with your body.
<icnjill> Do you offer psychological referrals for patients who are struggling?
<MaryRN2> Definitely! Having IC is as hard on our patients emotions and coping mechanisms as it is on the bladder. Sometimes a little outside assistance can be very helpful.
<icnjill> Ken wants to know if your clinic has ever done any procedure that involves nerve destruction to reduce pain?
<MaryRN2> Only with oral medications at this point or a TENS unit which isn't nerve destruction, more like distraction. If that is an option, we make the referral to a pain clinic for more intensive pain management procedures.
<icnjill> Theresa has a great question. She asks "How do you know when it is time to change doctors?"
<MaryRN2> Very good question! When you are not getting relief and are not satisfied with your treatment regime... when your quality of life is not improving. You have to give it some time, i.e. like with Elmiron, which can take months before it is beneficial. Some treatment therapies take longer to work. It's important to have some patience.
<icnjill> Is it appropriate for patients to bring things like cookies to the nurses and doctors that help them?
<MaryRN2> Yes, they love it! Just remember to use kind words. Remember that we really are trying to help and your kind words are reward enough.
<icnjill> One last question from Carol! Have you had patients who have had intense clitoral discomfort or irritation? If so, what have you found to be helpful? This is a very good question because one of the "secrets" that IC patients hold back from their providers is that, sometimes, IC discomfort can be slighly arousing... or that the clitoris can become involved.. supersensitive and, in some cases, really painful.
<MaryRN2> One of the things that we see is that some patients have very poor knowledge of physiology and the normal anatomy of a female. Noone has mentioned clitoral discomfort to me but its likely that they are too embarrassed to talk about it. I talk with women about painful intercourse and that's usually how they present it. Or.. they may just not know the different tissues. We often recommend the use of a lidocaine jelly about 30 to 45 minutes prior to intercourse and that can help some but it's the pressure from the penetration that seems to be the greater problem.!
<icnjill> Thank you Mary! We so appreciate the gift of your time tonight
<MaryRN2> Thank you! I truly was honored to be invited!
Special gratitude to Julie Halbur for coordinating this exceptional presentation.
Please review the ICN Disclaimer: Active and informed ic patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice in all cases, we strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. A copy of our more extensive disclaimer can be found at: http://www.ic-network.com/disclaimer.html
© 1999, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Mary Eno and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.