a interstitial cystitis: recognizing and caring for a wounded bladder nutrition 411

nutrition 411
Interstitial Cystitis: Recognizing and
Caring for a Wounded Bladder
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coming from the bladder. Many patients report their pain
is urethral, with varying degrees of pelvic pain. Other patients report back pain, shooting pain down the legs, and
pain that is positional — for example, sitting in one place
too long can trigger symptoms. In addition, both men and
women report pain with intercourse. Men with IC often experience penile pain at the moment of ejaculation; women
can experience pelvic pain up to 24 hours after intercourse.
Women’s symptoms also may increase premenstrually and
at ovulation.8 Brookoff9 explains that IC is primarily visceral. The messages for visceral pain travel to the same area of
the brain where emotions are generated, so IC patients may
appear to be highly emotional. In addition, IC pain can be
neuropathic; the person is in pain for so long, the nerves become damaged, resulting in more intense pain signals over
time. Patients considering cystectomy need to weigh the
perceived and potential benefits of bladder removal with
fact that many continue to experience neuropathic pain after surgery.
The other two cardinal symptoms of IC are frequent urination and an unexpected urge to get to the bathroom immediately. Patients have reported having to use the bathroom up
to 60 times a day. Nocturia and the resultant sleep disruption
become a major cause of distress for patients.
Although knowing clinical descriptions of the disease is
valuable, no definition of IC is complete without the vivid
comments IC patients use to explain how they feel. Often
patients will describe the pain as if they have “razor blades
or battery acid” in their bladders. Patients may be frustrated
because they are fine one moment and doubled over in unbearable pain the next.
Common comorbidities include irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, vulvodynia,
and various allergies, all suggesting a connection with the
immune system. Patients also may experience a variety of
mood or mental health disorders related to their disease.
People living with chronic pain often experience a tremendous amount of stress, suffering emotionally as well as
physically. Social lives may be disrupted and intimate relations strained. The despair and disability of many with IC
is very real; nearly half of all IC patients cannot hold fulltime jobs, and many patients become depressed. Suicidal
thoughts are not uncommon, and frequently, patients act
on those thoughts.10
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ccording to the Interstitial Cystitis Association (ICA),1
interstitial cystitis (IC), a painful and puzzling bladder disorder, “is a condition that consists of recurring pelvic
pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency.”
The RAND Interstitial Cystitis Epidemiology study2 reported
in 2009 that approximately 3 to 8 million women and 1 to 4
million men suffer from IC.
Historically, IC was considered a chronic pelvic pain syndrome originating in the bladder, but epidemiological studies
comparing IC with similar conditions belie the simplicity of
this statement. International researchers working to describe
what is happening to an IC bladder are including other syndromes similar to IC; hence, IC is referred to alternatively
as painful bladder syndrome (PBS), bladder pain syndrome
(BPS, used primarily in Europe), and hypersensitive bladder
syndrome (HBS, used primarily in Asia). Men also may be
diagnosed with chronic prostatitis (CP), which shares similar
symptom characteristics with IC. For the purpose of simplicity, in this article the condition will be called IC.
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Julie Beyer, MA, RD
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Clinical Presentation
Patients with IC experience urinary pain, frequency, urgency, and nocturia that cannot be attributed to other causes;
thus, diagnosis frequently is by exclusion.3-5 Although symptoms of IC can be confused with a urinary tract infection,
urine from an IC patient does not show any bacteria when
cultured. The fundamental pathophysiology of IC is a damaged or wounded bladder lining. Both the glycosaminoglycans (GAG) layer (the protective mucous coating on the
surface of the bladder) and the urothelial layer (the skin-like
barrier that transmits the messages of pain and urgency to
the brain) can be damaged in a bladder, causing IC symptoms. Diagnosticians may observe glomerulations, or petechial hemorrhages, when a patient undergoes a cystoscopy
under anesthesia; however, there is some concern this damage could be caused by the procedure itself. Approximately
7% to 9% of patients actually have ulceration (Hunner’s
ulcers) in the bladder lining.6 Mastocytosis (akin to having
hives in the bladder) is also a common finding.7
Assessing Bladder/Urethral Symptoms
For diagnostic purposes, IC pain generally worsens as
the bladder fills with urine and is relieved upon emptying the bladder. The pain may or may not be perceived as
Julie Beyer, MA, RD, is a registered dietitian and interstitial cystitis patient. You may contact her at: www.ic-diet.com. This article was not subject to the
Ostomy Wound Management peer-review process.
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nutrition 411
• Consider treatments from least to most conservative
depending on initial presentation of the patient. Pain
management is important at every level.
• Consider multimodal treatments to control the various
aspects of the condition.
• Second-line treatments include pelvic floor physical
therapy, and both oral and intravesical medications.
• Third-line treatments include cystoscopy under anesthesia and treatment/excision of Hunner’s ulcers if
indicated.
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• Fourth-line treatments include neuromodulation and
continued pain management.
IC
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• First-line treatments include patient education,
stress management, and self-care including dietary
modification.
Current IC Treatments
Previously, experts had considered IC to be a disease
with little, if any, chance of improvement regardless of treatment.13 Although IC still does not have a cure, the outlook
is much brighter. A variety of lifestyle changes, medications,
and medical treatments are available to ease symptoms, improve quality of life, and possibly provide relief in the form of
a remission. As a result, an individualized treatment plan often involves patients working with a multidisciplinary team
that includes urologists, gynecologists, nurse practitioners,
counselors, physical therapists, and dietitians.11 In 2011, The
AUA11 published the most comprehensive treatment guidelines to date (see Table 1), establishing a plan based on individual patients’symptoms presentation, beginning with the
least invasive treatments (lifestyle modifications) and graduating to various medical and surgical interventions.
Medications. Currently, pentosan polysulfate (PPS, Elmiron™ Janssen Pharmaceuticals, Inc, Titusville, NJ) is the
only oral medication approved by US Food and Drug Administration (FDA) for use in IC. PPS is believed to help
rebuild the damaged GAG layer of some patients. Because
an objective assessment of PPS effectiveness would require
secondary invasive procedures, evaluation of PPS efficacy is
still primarily dependent on the subjects’ self-evaluation of
symptoms. Reports of efficacy vary, with between 32% and
50% of patients on PPS reporting improvement in their
symptoms. The primary drawback of PPS is its low bioavailability; only 10% of PPS is absorbed in the digestive tract.14
However, PPS now has received attention in the scientific
community when used as an intravesical instillation combined with other drugs, specifically lactose-bound heparin.
Although researchers still are not certain how this process
works, it is thought that the PPS instilled in the bladder assimilates into the GAG layer more effectively than when used
as an oral treatment.15
Other oral medications used to treat IC symptoms in patients include urinary anesthetics, tricyclic antidepressants
such as amitriptyline (for pain relief ), anti-convulsants,
immunosuppressants, opiates, and nonsteroidal anti-inflammatory agents.16 Antihistamines (hydroxyzine HCL or
hydroxyzine pamoate) can successfully reduce symptoms in
patients who have demonstrated high mast cell distribution.
Antihistamines also can reduce anxiety and act as a sleep aid
for patients. Antibiotic and antifungal therapy are controversial treatments, but occasionally considered if an infection is
suspected to be present despite sterile urine.
With the advent of anticholinergic therapies used in cases
of overactive bladder (detrusor overactivity), it is important
to note that IC is not the same as overactive bladder and generally does not respond to anticholinergic therapy.17
Medical interventions. Allergy testing and treatment may
seem like an unusual therapy for IC, but a large number of
IC patients present with allergies, and many report some
relief of symptoms when they undergo allergy treatment.
Botulinum toxin A (BTX-A) shows promise in early trials as
an intramuscular injection.18 Researchers also are evaluating
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Table 1. A summary of American Urological Association treatment guidelines for interstitial cystitis/
bladder pain syndrome
• Fifth-line treatments include treatment with cyclosporine A and intradetrusor botulinim toxin.
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• Bladder removal and urinary diversion are considered
“last resort” unless patient’s bladder structure warrants
earlier intervention.
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Adapted from Interstitial Cystitis Treatment Algorithm (American Urological Association)11
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Diagnosing IC
The primary diagnostic challenges are for patients to
convey their unusual bladder symptoms to their medical
care providers and the ability of those providers to recognize patients’ bladder symptoms as something requiring
further investigation. Diagnostic methodologies have been
hotly debated in the past 10 years. The 2011 guidelines developed by the American Urological Association (AUA)11
recommend using tests and questionnaires that create the
least amount of trauma to the patient or bladder.11 Of
course, the least invasive medical procedure would entail
a measurement biomarker unique to IC patients, the most
promising of which is the antiproliferative factor (APF) discovered by Keay et al12 and reported in 2002.
As previously stated, getting an appropriate diagnosis
relies on educating patients and physicians to the possibility of IC while increasing the awareness of newer tools
and diagnostic resources among primary care providers.
Until more universal diagnostic criteria are developed,
IC remains a disease of exclusion, and clinicians and researchers alike generally follow a systematic, multifactorial
diagnostic pathway.
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titis, and epididymitis in outpatient urological practice: The Canadian PIE
Study. Urology. 2005;66:935–940.
6. Kanai A, de Groat W, Birder L, Chai S, Hultgren S, Fowler C, et al. Symposium report on urothelial dysfunction: pathophysiology and novel therapies. J Urol. 2006;175:1624–1629.
7. Theoharides TC, Kempuraj D, Sant GR. Mast cell involvement in interstitial cystitis: a review of human and experimental evidence. Urology.
2001;57(suppl 6A):47–55.
8. Warren JW, Diggs C, Brown V, Meyer WA, Markowitz S, Greenberg P. Dysuria at onset of interstitial cystitis/painful bladder syndrome in women.
Urology. 2006;68:477-481.
9. Brookoff D. Interstitial Cystitis and Pain Management. Presentation at the
Northern California Summit on Chronic Pain, Santa Rosa, CA. 1997. Available at: www.ic-network.com/handbook/brookoff.pdf. Accessed September 15, 2011.
10.Ratner V. Current controversies that adversely affect interstitial cystitis patients. Urology. 2001;57(suppl. 6A):89–94.
11.Hanno PM, Burks DA, Clemens JQ, et al. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome. American Urological Association
(AUA) Guideline 2011. Available at: www.auanet.org/content/guidelinesand-quality-care/clinical-guidelines/main-reports/ic-bps/diagnosis_and_
treatment_ic-bps.pdf. Accessed September 15, 2011.
12.Keay S, Zhang CO, Shoenfelt JL, Chai TC. Decreased in vitro proliferation
of bladder epithelial cells from patients with interstitial cystitis. Urology.
2003;61:1278–1284.
13.Propert KJ, Schaeffer AJ, Brensinger CM, Kusek JW, Nyberg LM, Landis
JR, and The Interstitial Cystitis Data Base Study Group. A prospective
study of interstitial cystitis: results of longitudinal follow up of the interstitial cystitis database cohort. J Urol. 2000;163:1434–1439.
14.Erickson DR, Sheykhnazari M, Bhavanandan VP. Molecular size affects urine
excretion of pentosan polysulfate. J Urol. 2006;175(3 Pt 1):1143–1147.
15.Muthusamy A, Erickson DR, Sheykhnazari M, Bhavanandan VP. Enhanced
binding of modified pentosan polysulfate and heparin to bladder—a strategy for improved treatment of interstitial cystitis. Urology 2006;67:209–213.
16.Nickel JC. Opioids for chronic prostatitis and interstitial cystitis: lessons
learned from the 11th World Congress on Pain. Urology. 2006;68:697–701.
17.Minaglia S, Ozel B, Bizhang R, Mishell DR. Increased prevalence of interstitial cystitis in women with detrusor overactivity refractory to anticholinergic therapy. Urology. 2005;66:702–706.
18.Smith CP, Radziszewski P, Borkowski A, Somogyi GT, Boone TB, Chancellor MB. Botulinum toxin A has antinociceptive effects in treating interstitial
cystitis. Urology. 2004;64(6):871–875.
19.Oyama IA, Rejba A, Luknan JC, Fletcher E, Kellogg-Spadt S, Holzberg
AS, Whitmore, KE. Modified Thiele massage as therapeutic intervention
for female patients with interstitial cystitis and high-tone pelvic floor dysfunction. Urology. 2004;64(5):862–865.
20.Beyer JA, The IC Diet and Food List 2011. Available at: http://ic-diet.com/
IC%20Diet%20and%20Food.
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pelvic floor physical therapy with validated instruments, providing evidence of efficacy of a therapy that has been used
successfully for years in many patients.19
Instillations. Intravesical instillations can be helpful for
some patients and include dimethyl sulfoxide (DMSO), heparin, lidocaine, and the previously mentioned offlabel use of
PPS dissolved in a solution. External and surgically placed
sacral neuromodulation devices have been used successfully
in some patients, although overall results have been mixed.
Much more invasive surgical procedures can be used, with
bladder removal considered a last resort.11
Diet and lifestyle changes. Diet and other lifestyle modification techniques are very helpful in helping IC patients
take control of their symptoms. Patients often suspect that
certain foods trigger their symptoms long before they are diagnosed. For most IC patients, the worst offenders are tomato
products, cranberry juice, citrus fruits, soy, coffee, tea, sodas,
alcoholic beverages, chocolate, and spicy foods.20 A wellconstructed elimination diet plan including symptom and
food intake journals can help uncover other individual food
sensitivities. Stress management education can be nearly as
important in diet to modify the effects of stress hormones on
the urinary system.11 n
References
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1. Interstitial Cystitis Association. What Is IC? 2009. Available at: www.
ichelp.org/Page.aspx?pid=327. Accessed September 15, 2011.
2. Barry SH, Stoto MA, Elliott M, et al. Prevalence of interstitial cystitis/painful
bladder syndrome in the United States. J Urol. 2009;181:20–21.
3. Hanno PM. Interstitial cystitis—epidemiology, diagnostic criteria, clinical
markers. Rev Urol. 2002;4(suppl 1):53–58.
4. National Institute of Diabetes and Digestive and Kidney Diseases, National
Institutes of Health. Interstitial Cystitis/Painful Bladder Syndrome. 2005.
Available at: http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/. Accessed September 15, 2011.
5. Nickel JC, Teichman MH, Gregoire M, Clark J, Downey J. Prevalence,
diagnosis, characterization, and treatment of prostatitis, interstitial cys-
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