Interstitial
Cystitis Network IC Expert Guest Lecture Transcript
Date: February 13, 2001
Topic: A
Multi-Dimensional Approach to Treating IC
Speaker: BJ Czarapeta, Founder - Urology Wellness Center
Moderator: Jill Osborne, ICN Founder
(icnmgrjill)
We'd link to thank our sponsor for tonight's chat: Farr
Laboratories (makers of Cysta-Q). With their support, this and many other
IC support activities are made possible. We are very grateful that they believe
in the needs of IC patients.
(icnmgrjill) Welcome BJ!
(bjczarapeta) Thank you very much Jill. It's nice to be here and to have the opportunity to speak to the participants in this chat room!
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(icnmgrjill) What types of patients do you currently treat?
(bjczarapeta) One of the approaches that the Urology Wellness Center has advocated is a multidimensional approach to IC and to evaluating pelvic pain, such as vulvodynia. I also work with urinary incontinence patients, prostatitis, post prostatectomy, and even some fecal incontinence and chronic constipation patients.
(icnmgrjill) BJ. How did you first get interested in IC?
(bjczarapeta) Well, first off. The fact that I'm doing what I'm doing boggles my mind and the fact that this is my 20th years as a nurse practitioner boggles my mind. When I first started out as a graduate of the adult geriatric program at George Washington University, I started out in geriatrics. I later went into orthopedics and chronic pain. It was an easy jump from chronic pain in orthopedics to chronic pain of the bladder.
(bjczarapeta) In 1987, at a urology nurses meeting, I heard Vicki Ratner's husband speak about IC. He spoke because she couldn't make it to the meeting because of her pain. So, when I got back to DC and discovered that one of my division patients had IC, I became interested and began attending support group meetings of the Northern Virginia Chapter. They were a very progressive support group and shortly thereafter, they discovered Dr. Fugazzotto and his theory about the fastidious infection related to IC. Many of them began to get better on antibiotics.
(bjczarapeta) A few years later, I opened my private practice as an incontinence and IC practice. My initial treatment model for IC was basically antibiotics and biofeedback for pelvic floor muscle spasms. Some of my patients also had back pain. I used my orthopedic techniques on their back pain and discovered, low and behold, that some of their bladder pain went away also. So, I began to research trigger points, muscle spasms and the treatments and developed my multi faceted treatment for IC, which has been developed and refined over the 9 years of my practice.
(bjczarapeta) My basic philosophy is to develop an individualized treatment program that fits the patient rather than trying to get the patient to fit the program. It's full of very simple, non-invasive techniques that have been very very helpful to practically all of my patients.
(bjczarapeta) Let me start with a caveat. Many people get tied into thinking that this is a bacterial infection. I don't really believe that. I believe that because of an unhealthy pelvic organ… an opportunistic infection can get in. My approach to treating IC involves controlling the bacteria present (if any), while making the pelvic organs healthier.
(icnmgrjill) BJ, when you first see a patient, is your first step is a complete urine culture?
(bjczarapeta) Yes, aside from only Dr. Fuzzy, there is only one lab in the country that does the culture for fastidious bacteria that I find reliable. The other lab is United Medical Labs in McLean Virginia.
(bjczarapeta) It's not a simple urinalysis. They do two types of cultures at the same time. One culture is the standard culture that most urologists request when urine goes to the lab. But, they also do a broth culture after doing a washing technique to wash out impurities that would prevent the bacteria from growing. They also do a low colony count and they grow it extra long. In analyzing the results of both cultures, I can tell if there is a fastidious bacteria. These bacteria respond to be treated in a particular manner.
(icnmgrjill) Do you always find bacteria?
(bjczarapeta) Not always, but usually in the great majority of cases.
(icnmgrjill) There is some controversy regarding the use of antibiotics to treat IC, including that they could lead to additional problems, such as a yeast overgrowth.
(bjczarapeta) First of all, though we use antibiotics longer than they are for a simple UTI, our goal is to get the person off the antibiotics. It is probably at least one month of therapy and I always treat for yeast when I treat for infection. That does not mean, necessarily a vaginal yeast infection.
(bjczarapeta) One thing to remember is that yeast produces toxins and the toxins are a bladder irritant. So, the toxins can be in the patients sinuses or their ears or intestines. They can also have an allergy to the yeast itself or to the toxins from the yeast. These toxins create a histamine response that makes the person sick.
(bjczarapeta) I attribute my concurrent administration of yeast medication to the lack of complications from the antibiotics. I really can't remember a resistance to the antibiotics having occurred.
(icnmgrjill) So... one big way that you differ from Dr. Fuqazzotto's approach is that you advocate a relatively short treatment time compared to the months of antibiotics that he has advocated.
(bjczarapeta) I also advocate full dose, whereas he tends to lower the size of the dose. I lower the frequency of the dose, but recommend full strength.. where as he keeps and extends the frequency and lowers the dose.
(icnmgrjill) What happens when you first see a patient?
(bjczarapeta) We use the first patient visit as an information gathering session. I'm interested in finding if they have bacteria, how frequent they urinate and how much they go. I'll do a physical exam looking for signs of yeast and trigger points/muscle spasms (and for various assymmetries of the back and pelvis that can participate in spasms.
(icnmgrjill) Kdial has the first question. She wants to know if the back pain can be centered around the kidneys?
(bjczarapeta) My experience is that most people don't actually know where the kidneys are. The kidneys are under the ribs in the back. Most people think they are lower. They are higher up the back and under the ribs. Kidneys don't hurt when they move but many people have spasms of their back muscles when they move, particularly quaddratus muscles, which comes from the back over the kidneys and comes around and hooks to the front of the pelvis. Relieving that muscle spasm there can relieve a lot of the pain they perceive in their back and in their kidneys. Most IC patients do not have kidney infections.
(icnmgrjill) Don asks "Have you had success treating Hunner's Ulcers with your approach?"
(bjczarapeta) I actually have Hunner's ulcers patients who have responded favorably to antibiotics to the point that their doctors said that their bladders looked better. I believe that he indicated that the ulcers went away.
(bjczarapeta) However, I should say that I don't usually advocate repeated cystoscopies. Cystoscopy is necessary because the symptoms of IC are similar to the symptoms of bladder stones and bladder cancer and these need to be ruled out in the beginning... and then, maybe, periodically if there is a change of symptoms.
(icnmgrjill) Have you found that Hunner's Ulcers patients often have underlying severe pelvic muscle issues going on. I say that because the AMA released a study a few years ago which showed that pelvic muscle injuries in childhood can lead to frequency/urgency/bladder symptoms later in life and some researchers believe that a muscle inflammation can lead to a deterioration of the bladder wall.
(bjczarapeta) Yes.. I believe that too. That's what I'm finding. In our orthopedic assessments of patients, we're finding, in at least 75% of patients, an orthopedic muscular skeletal problem that, when relieved, relieves a lot of the symptoms, like a rotated pelvis, where one leg is shorter than the other. Also there are foot problems and if you have foot problems and you walk funny this promotes spasms in the pelvic floor. I frequently refer people to orthotics.
(bjczarapeta) This past year at the IC convention in Minneapolis they began to say that IC wasn't just in the bladder and that it was a total body problem. I've been saying that for years.
(icnmgrjill) Francine asks "I've had IC for two years... my doctor just discovered that I have spina bifida of the last three vertebra in my spine. He thinks this could be contributing to my bladder and bowel problems. Is this possible?"
(bjczarapeta) With the vertabra not being closed, as is found in spina bifida, the nerves are exposed. This can affect the bladder. Whether this is actually happening in her case, I can't say. She should definitely see a neurologist.
(icnmgrjill) Charlie asks "I'm a 74 year old male with IC and for the past several months, I have developed chronic nasal congestion and have all of the symptoms of an allergy. Is my IC condition in any way responsible for my nasal congestion??"
(bjczarapeta) There
is no way that I can say for sure. Going on my basic premise that a lot of
this is orthopedic, one thing that a lot of people don't know is that if you
have a spasm of a muscle in your neck, this can contribute to nasal congestion
and runny noses. If a persons spine is assymetrical and they have muscle spasms
in their neck, they may want to check with a physical therapist to get rid
of the muscle spasms. (This is discussed in one of the most prominent books
that we have on trigger points - Janet Travell's "Trigger Point Manual.")
Other than that any allergies can affect the bladder as well as the rest of
the body so I doubt that the IC is causing the nasal congestion but the same
thing could be causing both IF it is an allergy.
(icnmgrjill) Deb asks... Is it normal to gain weight with IC?
(bjczarapeta) No, it's not normal to gain weight with IC but it is normal to gain weight with the use of some medications, such as Elavil, which can promote food cravings. So, it may result in a weight gain. However, many of my patients on my IC diet lose weight.
(icnmgrjill) That makes think of the IC belly phenomenon. Many of use experience gross swelling around the hips and waist that seems to come and go. One moment we have a flat stomach, but an hour later we can look five months pregnant. Any comments on that?
(bjczarapeta) Makes me think of yeast primarily and also the possibility of constipation, which many IC patients seem to suffer from.
(icnmgrjill) Traci asks "Are their any IC oral medications that are safe to use during pregnancy???"
(bjczarapeta) No physician in their right mind would recommend a medication to a pregnant or lactating mother without permission from their OB-GYN. This is particularly true of Elmiron. However, ampicillin and nystatin are usually considered safe for pregnancy and lactation. Many of the muscle trigger point work can be safe. Bladder training is safe during pregnancy and the diet is safe. As always, talk with your personal medical care provider if you have any specific drugs that you are concerned with.
(icnmgrjill) Louise asks "Has anyone found relief with hormone replacement."
(bjczarapeta) Some
people have but some people have found that estrogen will put them into an
IC flare. So, one just has to check it out and try it under the supervision
of their health care provider.
(icnmgrjill) Susan asks "During a recent 3 week flare.. my urologist
put me on a low dose antibiotics. Why do they do this when no bacteria is
present in the urine?"
(bjczarapeta) Beats me. When I prescribe antibiotics, I usually bacteria in the urine. I'm interested in what she means by low dose. I think he's just trying to cover for a bacteria that he hasn't found. They are probably looking for mycoplasma or anaerobic bacteria that aren't found in culture.
(icnmgrjill) Kaye kaye asks "Is the immune system affected by IC?"
(bjczarapeta) Yes, it is frequently affected by IC and in some cases, may be part of the cause of IC. It's also certainly affected by many of the treatments for IC. Though research hasn't demonstrated a connection between IC and autoimmune diseases, we've certainly seen that some patients have autoimmune vulnerability and those patients may often have fibromyalgia or lupus. Some research shows the possibility of a connection while others don't. More research is needed here.
(icnmgrjill) Jill Jackson asks "Someone in my support group mentioned that the chinese consider IC to be connected to kidney problems. What is the connection, if any??"
(bjczarapeta) I consider it a total body problem.
(icnmgrjill) Another question.. "I've been on antibiotics for several years, off and on, and have suspected that they were the cause of IC particularly because some antibiotics really made my bladder sting more. Any comments?"
(bjczarapeta) Many IC patients have had all sorts of antibiotics thrown at them over the course of their disease. Most of the usual antibiotics given by urologists are to treat gram-negative bacteria. The bacteria that we have found with the broth culture are broth culture are gram positive bacteria and are treated in a different way. I also believe, as you know, it's important to treat for yeast at the same time.
(icnmgrjill) Another question... "How do I know if I have a yeast problem... especially if I don't have a vaginal discharge?"
(bjczarapeta) If you're a woman and if you've been on antibiotics, you probably have a yeast problem. Some of the symptoms of yeast overgrowth described in the book "The Yeast Connection" by William Crook include: fatigue, muscle ache, sugar cravings, difficulty sleeping. Bloating, irritability, foggy brain, sensitivity to smells or absence of smells are also symptoms.
(bjczarapeta) Since I mentioned Crook and the Yeast Connection, I should say that you cannot follow the anti-yeast diet while on an IC diet. There would be nothing to eat. I had one patient end up in the hospital with malnutrition trying to do it on her own. Now, I can say that a lower carb diet is acceptable but not the full anti-yeast diet. I frequently recommend picking the foods from the IC diet but following the Atkins recommendations.
(icnmgrjill) Anita asks "Do you have patients that had success with your program that are willing to talk with others."
(bjczarapeta) Yes... you can find them on the ICN web site. But we're also creating a new web site (urologywellnesscenter.com) for our clinic and that may be another opportunity for you to meet others. In the mean time, you can certainly email me questions. Our site is under revision and development so expect some big changes in the near future!
(icnmgrjill) kdial says "I hear that IC patients shouldn't try Atkin's diet because it causes keto-acidosis"
(bjczarapeta) I haven't found that. Patients have to remember, with the diet, that it's not just acid with the diet. Most of my patients are doing very well with the Atkins diet, particularly if they have yeast because if you control the yeast you get rid of a lot of the discomfort in the bladder. The yeast toxin is a bladder irritant.
(icnmgrjill) BJ.. here's a tough question.. Did you have any beliefs about IC in your early days.. that have changed dramatically today???
(bjczarapeta) I think what changed most is that I no longer feel that IC is a pure infection. I believe that some patients have an opportunistic infection that is a component. I think that I have always believed that it was total body, that it was outside of the bladder and that the bladder was an end organ in the disease process. I developed that belief because medications for the bladder like pyridium and ditropan didn't work well. And also if the bladder was removed the pain was still there.
(icnmgrjill) Do you use DMSO or some of the other "commercial" prescriptions like Elmiron in your practice?
(bjczarapeta) I never use DMSO and do not believe in it. I do prescribe Elmiron sometimes. I recommend Aloe Vera because we did a study on it which showed that it relieved pain. I will prescribe many of the other medications including muscle relaxants, tricyclic antidepressants, anticholinergics and pain medications when necessary.. but on an individualized basis.
(icnmgrjill) Lisa asks "I have severe pain and spent a few years doing pelvic floor muscle rehabilitation because they said that my muscles were in bad shape. But I didn't respond well. I think my therapist didn't know how to do it properly. Two questions: How long does it usually take for pelvic floor muscles to improve? And how can we find an experienced PT who does pelvic floor work. I feel like I wasted my time."
(bjczarapeta) When doing the pelvic floor muscle exercises and you have IC, the emphasis needs to be on the relaxation phase and not on the total strength of the contraction. I do think that it needs to be used in the total context of all the other measures, including the diet, trigger point therapy, reducing other muscle spasms, fluid management and bowel training.
(bjczarapeta) One of the things that the pelvic muscle can do is that if it is contracted, without contraction of the abdomen, it can turn off the contraction of the bladder. This is what we do to teach urge control in the bladder training.
(icnmgrjill) That's really interesting to me. I talked with a newly diagnosed patient last night whose doctor recommended urethral dilations because she was "leaking". Any comments??
(bjczarapeta) I personally don't believe in urethral dilation in women because they usually have muscle spasm and our goal is to get the muscle to relax. Women have short straight urethras and very rarely do they get scarred from injury, whereas every little boy that has been racked on his bicycle and may have scar tissue in their urethra. Urologists were trained to dilate men for this reason.
(icnmgrjill) Don asks "Do you take out of state patients."
(bjczarapeta) Yes, people are coming in from all over. They usually come into the office and see me two days in a row. The first day is evaluation and the second day I do my darndest to help them. We follow up with phone consults about every two weeks. Insurance does not pay for phone consults but most will pay for the visits.
(icnmgrjill) Have you found that corn is irritant for IC patients given that it can be so acidic???
(bjczarapeta) Corn is on my list of foods that I do not have people eat at the beginning not because of the acidity but, for some, it can be an allergen.
(icnmgrjill) Liz also asks "Have you found any correlation between diabetes and IC."
(bjczarapeta) I have not heard of a correlation between the two.. or that diabetic patients have a greater incidence of IC.
(icnmgrjill) Thank you BJ for yet another wonderful presentation for us. As usual, you packed the house and offered yet another hopeful glimpse into the world of IC treatments.
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BJ Czarapeta's Contact
Information:
The Fairfax
Urology Center
10875 Main St., Suite 208
Fairfax, VA 22030
Phone: 703-591-5443
Related Websites:
Urology Wellness Center
Fairfax Urology
Books
& Resources That You can Purchase:
Patient to
Patient: Managing IC & Related Conditions By Gaye & Andrew Sandler
The Interstitial
Cystitis Survival Guide By Dr. Robert Moldwin $14.95/$12.00 for ICN Subscribers
Group Discounts Available for purchases of 5 or more!
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© 2001, The IC Network,
All Rights Reserved.
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