IC Optimist Fall 05 - Interstitial Cystitis Network

The IC OptimistPublisher:Interstitial Cystitis NetworkPO Box 2159Healdsburg, CA 95448(707) 538-9442 (V)(707) 538-9444 (F)www.ic-network.comCopies & Reprint Requests:Single issues are available for purchase.(707) 433-0413http://www.icnsales.comFeatured Writers:Stacey ShannonJulie Beyer, RDMolly Hanna-GliddenJill Osborne, MAImage Credits:Cover: © keeweeboyp. 3: © Offir Kilionp. 4: © rrociop. 8: © Nathan Schepkerp. 12: © YinYangp. 15: © cookiecatagencyp. 18: © Suprijono Suharjotop. 21: © emily2kp. 22: © bobbieop. 27: © photoincIn Memorium:Evelyn White - Former IC Support Group LeaderHer kindness will never be forgottenDesign & Production:Tapia Studios (707) 545-7741Featured Sponsors:Akpharma (Prelief)http://www.prelief.comCystaQhttp://www.cystaq.comBladder Qhttp://www.thenaturalbladder.comAstratech (Lo Fric Catheter)http://www.astratech.comWe welcome freelance query letters and adsubmissions for our publications and websites.For additional info: (707) 538-9442 or emailjill@ic-network.comThe IC Optimist is distributed electronically orin print format four times a year to subscribersof the Interstitial Cystitis Network, a medicalpublishing company dedicated to providinginformation & support for those struggling withinterstitial cystitis, overactive bladder, painfulbladder syndrome and pelvic pain syndrome.The ICN is a division of J.H. Osborne, Inc.from the publisherThe New Year feels like an action-adventure movierun amok. If you’re looking for a villain, look nofarther than Dr. Scott Reuben. He recently pledguilty to falsifying research data for the drugs Vioxx,Bextra and Celebrex that were pulled from the marketa few years ago for triggering strokes and heartattacks. In our editorial, we share his story andexplore the role that patients can play in creating agood vs. questionable research study.Winter is traditionally the time when few researchstudies are released, however, we do have some goodones to share including new, compelling evidence that anthistamines mayhelp reduce bladder symptoms. Chondroitin sulfate may help restore functionin the bladder wall. Botox continues to look promising. I was particularlyinterested in one study that showed that men with chronic testicularpain may actually be suffering from pelvic floor dysfunction.The hot news of this Winter season may surprise you. The patent forElmiron expired in January thus creating an opportunity for a new, genericform to be released provided, of course, that another pharmaceutical iswilling to produce it.Stacey Shannon, ICN Writer Extraordinaire, offers the third and finalpiece to her “She’s Having A Baby” article series, sharing the profoundlytouching birth story of her lovely daughter. She’s very blunt, sharing herstruggles and worries with labor, delivery and being a new mother. We’re sohappy for her! Julie Beyer RD has written a wonderful new article on theoften frustrating struggle we each have with the IC diet! Molly Gliddenhas written a helpful article about how a new medication could potentiallytrigger an IC flare.With a modest earthquake in Northern California and utter tragedy inHaiti, we are reminded that mother nature can be unpredictable andviolent. Thus, I ask you, have you created a home disaster kit for yourfamily?? Have you considered what you might need to help care for yourIC? I’ve shared the contents of my home disaster kit which, living inNorthern California’s earthquake country, is vital.We have a wonderful new resource to share. Ending Female Pain – AWoman’s Manual by Isa Herrera PT is a practical, easy to read book thatcan help patients who are struggling with PFD and pelvic pain. Got amirror?? You’ll use it after you read the book!We also offer several of the recipes submitted in our Holiday Hot DrinkBeverage contest that will give you many new, more IC friendly hot drinksto enjoy during the Winter! Check out the winning recipe “WhiteChocolate Vanilla Bean “Cocoa” with Cinnamon Whipped Cream. You’lllove it!Jill H. Osborne, ICN President and Founder2 • THE IC OPTIMIST • WINTER 10

contents4 ICN Editorial: It’s Timeto Prosecute5 The Latest IC Research8 It’s a Girl!She’s Having a Baby - Part 312 Is the IC Diet Making You Angry?14 Can a Medication Triggeran IC Flare?15 An IC Disaster Kit16 IC Friendly Ezekiel Bread17 Book Review: Ending Female Pain18 Hot Drinks to Warm Your Spirits20 Clinical Trial Announcement21 Self-Help Tip of the Month:The Ultimate IC Friendly Bathroom26 ICN Resource Catalog Copyright © 2010. Any reproduction is prohibited without prior writtenpermission from the ICN.Disclaimer: The Interstitial Cystitis Network website and publications arefor informational purposes only. The IC Network is not a medical authoritynor do we provide any medical advice. Nothing contained in this publicationshould be considered medical advice and should not be relied uponas a substitute for consultation with a qualified medical professional. Westrongly recommend that you discuss your medical care and treatmentswith your personal medical care provider. Only that medical professionalcan, and should, give you medical advice.Opinions expressed in articles are those of the authors and do notnecessarily reflect those of the ICN or its editorial board. The ICNassumes no liability for any material published herein.THE IC OPTIMIST • WINTER 10 • 3

ICN Editorial:It’s Time toProsecuteby Jill Osborne, MAYou may not be aware of the caseof Dr. Scott Reuben, a Massachusettsanesthesiologist who has pled guiltyfor falsifying research data for thedrugs Vioxx (Merck), Bextra (Pfizer)and Celebrex (Pfizer). In a plea dealannounced in January, he has agreedto pay over $400,000 dollars to pharmaceuticalcompanies to avoid moreserious penalties, such as a possibleten year prison term. (1)His crime wasn’t just against thecompanies that gave him money butalso the many patients who wereprescribed harmful medicationbecause of the 21 erroneous papersthat he convinced major journals topublish. The medications werepulled from the market after patientsexperienced sometimes-fatal heartattacks and strokes. (2) Is he culpable??Absolutely.But the issues around Vioxx alsorelate to the FDA approval processand leave many of us wondering justhow these medications received suchquick approvals to market withoutadequate study. We should have astable, trustworthy drug approvalprocess that is used to protectpatients not pad the pockets of variousmanufacturers.Researcher Ray Mankovitz offeredseveral recommendations in hisresponse to a Wall Street Journalblog (1) on the case that I think aresuperb.1. Criminalize the ghostwriting ofresearch papers, falsifying data, andwithholding of conflicts of interestand negative research results. If suchacts result in pharmaceuticals orfoods causing illness/death, homicidecharges should be considered.2. Criminalize acts by drug andfood companies that fund any of theactivities above, including the falsificationor withholding of dataprovidered to the FDA/EPA/USDA4 • THE IC OPTIMIST • WINTER 10for drug/food approvals.3. Criminalize intentional acts byany government employee (such asFDA, EPA, USDA) in charge ofhealth and or the food supply if suchacts result in harm to the public.4. To avoid undue influence, weshould prevent FDA/EPA/USDAemployees from working for anycompany in the fields they regulatefor at least a year after quitting theirpost.5. All research conducted at universitiesreceiving federal fundingshould be posted free, and thereshould be open dialog with consumersvia the web. Transparency ofdata and results is essential.Shortly after I got involved in ICawareness in 1995, I had twopatients share with me that they haddeliberately falsified their symptomdiaries when participating in a study.Why did they do it?? They believedthat they would lose access to theirhealth care and that specific doctorif they didn’t show that the treatmentwas successful even though itwasn’t.Because of the importance of thestudy, I called the FDA and advisedthem that the data had been falsified.I also shared that some patientswere instructing other patients to liewhich, in my opinion, underminedthe validity of the entire study. TheFDA’s reaction stunned me. Theysaid it happened in almost everystudy and that they hoped that therewould be enough honest responses tocouteract any of the fake informationgiven by patients.The responsibility for goodresearch doesn’t just rest with thecompanies and researchers involvedbut also with those of us who participatein their studies. You must providean accurate accounting of howthat treatment affecting you, good orbad, without worrying about the egosof the physicians or researchersinvolved. The last thing we need is atreatment approved which is laterfound out to be even more damagingor harmful.Do you have a story to share??Comments about studies you mayhave participated in?? Email them tome at: jill@ic-network.com(1) White J. Feds Accuse Doc ofFaking Research On Pfizer & MerckDrugs Wall Street Journal Health BlogJan. 15, 2010http://blogs.wsj.com/health/2010/01/15/feds-accuse-doc-of-faking-research-onpfizer-merck-drugs/(2) Rubin R. How Did The VioxxDebacle Happen USA Today10/12/2004http://www.usatoday.com/news/health/2004-10-12-vioxx-cover_x.htm

The Latest IC ResearchAntihistamines May Deserve aSecond Look for Therapy of BPSEditor’s Note - When you considertreatments for interstitial cystitis, thefirst that usually come to mind are thebladder coatings like pentosan polysulfate(Elmiron) or bladder instillations(rescue instillations, etc.) but weshouldn’t understimate the potential ofother adjunct medications that have thepotential of reducing discomfort. Casein point is the use of an antihistamine.Hydroxyzine HCL (Atarax) andHydroxyzine Pamoate (Vistaril) havebeen shown to be modestly helpful inreducing some IC symptoms. This newstudy suggests that some OTC antihistaminesmay be even more helpful.Clearly, more research is needed.Activation of bladder-associatedcircuits in the central nervous systemare purported to initiate substance Prelease by peripheral nerves in thebladder that then promote substanceP-mediated mast cell activation.This can release histamine that actson nociceptive neurons to inducepelvic pain that originates from thebladder. A subset of BPS patientsexhibit increased density of substanceP fibers in the bladder submucosawith substance P fibers inclose proximity to mast cells.Accumulation of lamina propriamast cells is correlated with BPSsymptoms, and increased levels ofurinary histamine metabolites havebeen detected in BPS patient urines.Pilot studies using hydroxyzine (H1Rantagonist) and cimetidine (H2Rantagonist) have shown modest therapeuticeffects for BPS symptoms.Dr. Charles Rudick and colleaguesfrom Chicago studied pharmacologicattenuation of pelvic pain in amurine model of BPS. They examinedthe therapeutic effects of multipledrugs on pelvic pain induced bypseudorabies virus injection throughthe skin into the abductor caudalisdorsalis muscle while animals weremaintained under anesthesia. Whileresults showed minor therapeuticeffects from hydroxyzine and cimetidine,newer antihistamines seemedto be more efficacious. The H1Rantagonists diphenhydramine andcetirizine reduced pelvic pain by atleast 40%. The H2R antagonist ranitidinewas more effective than cimetidineor famotidine, reducing 77%of the pelvic pain behavior. Protonpump inhibitors, histamine receptor3 agonist, and gabapentin had littleor no effect on pseudorabies virusinduced pelvic pain in this animalmodel.The authors’ data identify histamine1 and 2 receptors and neurokinin1 receptor as therapeutic targetsfor direct intervention in pelvicpain of BPS.Perhaps the newer, easily available,safe, over-the-counter H1 andH2 antihistamines deserve a moresystematic and coherent evaluationto identify their potential place inthe treatment of BPS. The authorssuggest that such clinical trials wouldbe welcome.Source: Rudick CN, Schaeffer AJ,Klumpp DJ Antihistamines MayDeserve a Second Look for Therapy ofBPS BMC Urol. 2009 Nov 12;9:16(Reprinted with the permission ofUroToday.)Intravesical Chondroitin SulfateShows Potential TherapeuticPromise for BPSAuthor - Phil Hanno MD (Urotoday)Editor’s Note - This editorial bymaster IC writer Phil Hanno MDcaught my eye. As you know, we'vehad a number of bladder instillationsthat have been proposed for IC, eachwith some success including intravesicalelmiron, rescue instillations, intravesicalhyaluronic acid (Cystistat) and intravesicalchondroitin. Their method ofaction is interesting. Some, like rescueinstillations, appear to help fight inflammationand/or soothe nerves while othersare designed to help promote theintegrity of the bladder wall.In this editorial, Dr. Hanno sharesthe research of a team in Oklahomawhich has shown that chondroitin, whenused intravesically in rats, restores whatappears to be normal bladder liningfunction. Of course, the use of chondroitinas a bladder instillation isn't newin IC circles. It's been used for years ina product called Uracyst, available inCanada and Europe. But this is a keeninsight into its potential. WatsonPharmaceuticals is in Phase III studiesof a new chondroitin instillation for IC.- Jill O.It seems evident that in manycases, bladder pain syndrome pathophysiologymay involve epithelialdysfunction. The bladder maintains acomplex set of defenses comprisingtight junction proteins and a denseglycosaminoglycan (GAG) layer onthe specialized urothelial apical cells(umbrella cells). These defenses arepresumably compromised in someBPS patients causing the urotheliumto become “leaky”, resulting in theappearance of substances addedintravesically into the circulation orreabsorption of fluorescein fromurine. The GAG layer has been proposedto represent a major componentof the impermeability barrier,though its importance can be questionedbased on the variability ofsymptomatic results from GAG therapiestaken orally or administeredintravesically. Intravesical GAGtherapy with sodium pentosan polysulfate,heparin or hyaluronic acidhas not yet been proven efficaciousin large, multicenter, randomizedcontrolled trials.An important publication by PaulHauser and colleagues fromOklahoma City looked at the GAGchondroitin sulfate in an animalmodel to explore its possible applicabilityto therapy of BPS. Let me stateat the outset of this report that I(Philip Hanno) have been a consultantfor Watson Pharmaceuticals, acompany currently testing intravesicalchondroitin sulfate for BPS inphase 3 trials around the country.The Oklahoma group, led by RobertHurst, quantified chondroitin sulfateTHE IC OPTIMIST • WINTER 10 • 5

inding to normal and acid damagedmouse bladder over the range of pHvalues expected in urine.Chondroitin sulfate provides severalpotential advantages overheparin, sodium pentosan polysulfate,and hyaluronan in simple barrierrestoration. It has no effect on thecoagulation system (although thishas not been a problem with anyintravesical treatment to date), it isinactive against many receptor systemsthat are affected by heparinoidsand hyaluronan, and it is inexpensive.Hauser and co-workers found thatin a model of acid damaged rat bladder,intravesical chondroitin sulfaterestored bladder impermeability torubidium ions to control levels.86Rubidium belongs to the samefamily of elements as potassium andis used as a model for potassiummovement across membranesbecause of the impractically shorthalf-life of potassium isotopes. Theyquantified the capacity of acid damagedbladder to intravesically absorbapplied chondroitin sulfate andfound that this binding is saturable,supporting the intravesical dose of400 mg used currently marketed inCanada for BPS intravesical therapy.Source: Hauser PJ, Buethe DA,Califano J, Sofinowski TM, CulkinDJ, Hurst RE Chondroitin sulfateintravesical solution is currently inphase 3 testing in the US. J Urol. 2009Nov;182(5):2477-82(Reprinted with permission ofUrotoday.)Chronic Testicular Pain Can BeA Symptom of Pelvic FloorDysfunctionMost men with IC report pain atthe tip the penis and also, to a lesserextent, in the scrotum or testicles.There is no doubt that men withthese “unexplained” symptoms areoften treated with antibiotics underthe mistaken assumption that theycould have a prostate infection.A study conducted in theNetherlands has demonstrated thatthis scrotal pain could be originatingfrom a previously undiagnosed pelvicfloor disorder. They assessed 41 men6 • THE IC OPTIMIST • WINTER 10with chronic testicular pain forpelvic floor tension and overactivity.On EMG, 88% (36 men with an agerange of 23 to 73 years) had anincreased pelvic floor resting tone.The authors urge men who strugglewith urination, defecation and/orsexual function to have a pelvic floorexamination which assesses theexternal and internal sphincter, thepuborectal muscle, and the levatorani. They suggest, as a first line therapy,biofeedback training and relaxationexercises. In a heartfelt conclusion,they offered, “referral to andtreatment by a pelvic floor physiotherapistafter ruling out other underlyingpathology may result in a decreasedneed for invasive surgical therapy,abundant use of antibiotics or othertreatment options…Hopefully this willreduce the long lasting medicalizaton ofthese patients.”Source: Planken E. et al ChronicTesticular Pain as a Symptom of PelvicFloor Dysfunctuion, Journal of UrologyVolume 183, Issue 1, 177-181(January 2010)Role of HydrodistentionDebated in The UKResearchers in the UK surveyedvarious gynecologists, urogynecologistsand urologists to determine howthey used cystodistention (akahydrodistention), including anThe authors urge menwho struggle withurination, defecationand/or sexual functionto have a pelvic floorexamination.assessment of the indications for use,techniques used, benefits seen andcomplications experienced.Cystodistention was most commonlyperformed for the diagnosisand treatment of IC, as well as forpatients who had reduced bladdercapacity and/or overactive bladder.Cystodistentions performed wereconsidered “short duration” distentionsfor under twenty minutes.The author concluded “It appearsthat cystodistension has a role in practice;however, its indications and benefitsare still controversial and there is awide variation in the technique of cystodistensiondue to lack of standardisation.Further research is needed beforeany conclusions about its benefits andsafety can be made.”We agree. The role of hydrodistentionhas been debated for the pastten years. There is one study byWaxman(1998) which found thatthe procedure itself had the potentialof creating petechial hemorrhagingin the bladders of normal womenthus suggesting that a false positivefor IC could be observed. Yet, manyclinicians agree that while the procedurecan create bleeding, typical ICpatients have more findings in theirbladder wall than a normal patient.In some urology clinics, hydrodistentionis not performed initially infavor of other less traumatic testssuch as the anesthetic challenge recommendedby Dr. Robert Moldwinor the Potassium Sensitivity Test(KCL) suggested by Dr. LowellParsons.Patients also have strong opinions.Some have tolerated the testwith no related complications whileothers believe that it worsened theirIC symptoms and condition.Ultimately, the decision to performa hydrodistention is madethrough a careful consideration ofthe pros and cons of the testbetween the patient and the physician.Source: Mahendru AA, Al-TaherH. Cystodistension: certainly no standardsand possibly no benefits--surveyof UK practice. Int Urogynecol J PelvicFloor Dysfunct. 2010 Feb;21(2):135-9.

Botox Found Safe & Effective InTwo Year StudyResearchers in Italy reported on a2-year efficacy and tolerability studyof intravesical botulinum A toxin(BoNT/A) injections in patientswith painful bladder syndrome (PBS)that did not respond to conventionaltreatments.Thirteen women were prospectivelyincluded in the study. The preliminaryassessment included voidingdiary, urodynamics, urinary tractultrasound and the visual analogscale (VAS) for pain quantification.All patients received multiple injectionsof 200 U commercially availableBoNT/A diluted in 20 ml 0.9%NaCl, under cystoscopic guidance.Clinical evaluation, urodynamics,urinary tract ultrasound and VASwere repeated at least two times peryear throughout the follow-up.A total of 58 injections wereadministered with a mean of 4.8 +/-0.8 injections per patient. The meaninterval between two consecutiveinjections was 5.25 +/- 0.75 months.At 1 and 4 month follow ups tenpatients reported a subjectiveimprovement. Mean VAS scores,mean daytime and night-time urinaryfrequency decreased significantly.Nine patients at 1 month andseven at the 4-month check-up complainedof dysuria. The three nonrespondersto the first intravesicaltreatment session underwent anotherthree months later with satisfactoryresults. At 1 and 2 years follow upthe beneficial effects persisted in allpatients. No systemic side effectswere observed.The authors conclude thatIntravesically injected BoNT/A iseffective and safe in the mediumtermmanagement of patients withPBS. As the beneficial effectdecreased progressively within a fewmonths after treatment, repeat injectionswere needed over time.Source: Giannantoni A et. al. Twoyearefficacy and safety of botulinum atoxin intravesical injections in patientsaffected by refractory painful bladdersyndrome Curr Drug Deliv. 2009 Oct29.Prevalence of Interstitial Cystitisin Vulvodynia Patients Detected byBladder Potassium SensitivityIntravesical potassium sensitivityhas been reported in 82% of vulvodyniapatients, suggesting the bladdergenerates their pain and indicatinginterstitial cystitis (IC)/painfulbladder syndrome deserves greaterattention in the differential diagnosisof vulvodynia. The aims of this studywere to: (i) determine the prevalenceof IC as detected by intravesicalpotassium sensitivity; and (ii)survey for urinary, pelvic pain, andsexually associated symptoms inpatients with vulvodynia.Consecutive patients with vulvodyniawere surveyed for urinary andpelvic pain symptoms using thepelvic pain and urgency/frequency(PUF) questionnaire, and tested forabnormal epithelial permeabilityusing the potassium sensitivity test(PST). Rates of positive PST weredetermined overall and by PUF scorerange, and were compared inpatients with intermittent vs. constantvulvodynia symptoms.Of 122 vulvodynia patients, 102(84%) had a positive PST and 97(80%) had urologic symptoms. Ofthe 87 sexually active patients, 81(93%) reported pain associated withsex. Patients with constant (72/87,83%) vs. intermittent symptoms(30/35, 86%) had no significant differencein rates of positive PST.Mean PUF score was 13.2. PUFscores of 3-4 were associated with an86% rate of positive PST; scores 5-9,44%; 10-14, 84%; 15-19, 87%; 20-24, 86%; and 25 and above, 100%.Most patients with vulvodynia havea positive PST and urgency/frequency,indicating pain of bladder origin(IC). IC deserves far greater considerationin the differential diagnosisof patients with vulvodynia. Thisrepresents a dramatic change for thegynecologic paradigm of vulvodynia,which in many cases appears to bereferred pain from the urinary bladder.Source: Kahn BS, Tatro C, ParsonsCL, and Willems JJ. Prevalence ofinterstitial cystitis in vulvodynia patientsdetected by bladder potassium sensitivity.J Sex Med 2009 Oct 20Elmiron Patent has ExpiredThe patent for Elmiron ® (pentosanpolysulfate sodium) expiredJanuary 19, 2010 raising a varietyof concerns. Having a patentexpire means that the drug is nowavailable for manufacturing as ageneric medication. For patients,this can be a very good thingbecause generics are usually muchless inexpensive than the brandname medication. As one patientreported on our website, Elmiron ®can cost over $700 per month ifyou lack drug prescription coverage.To have that monthly feereduced to, say $25 per month,This represents adramatic change forthe gynecologicparadigm ofvulvodynia, which inmany cases appears tobe referred pain fromthe urinary bladder.would allow many more patientsaccess to this vital therapy.Of course, the challenge is profitability.Elmiron ® is only FDAapproved oral drug for the treatmentof interstitial cystitis thus itdoesn't have as large a marketshare as other popular generics.Will another pharmaceutical companystep in and try to capture themarket? At this point, we're notaware of any companies who areconsidering making pentosan polysulfatein a generic form. But, wehope so. We’ll keep you posted onfuture developments.THE IC OPTIMIST • WINTER 10 • 7

It’s A Girl!She’s Having a Baby - Part 3by Stacey ShannonIn my previous two articles, Ishared about my journey to get pregnantand then what pregnancy waslike up through my second trimester.When we left off, I had just enteredmy third trimester and was just startingto feel the baby on my bladder.Now the baby is here, and I’m happyto share how the end of the pregnancyand labor and delivery went.The Third TrimesterWith the third trimester, I wasgrowing more and more excited asmy belly was growing bigger and bigger.I never had a complete conceptof how large it was until I look backat photos now that it’s gone. Itwasn’t until this trimester and nearthe end of my pregnancy, though,that strangers even began to talk tome about being pregnant. The bellywas obviously a baby one and notjust extra weight.I have read that the thirdtrimester can be similar to the first asfar as energy level goes. I was moretired than I had been in the secondtrimester, but I wasn’t nearly asutterly exhausted as I had been inthe first trimester. I also had a definiteincrease in heartburn. I keptTums beside my bed and took thempretty much every night in order tosleep better.Sleep became a whole other issue.Through all of my bladder issues,sleep has never been a problem forme. Even though I’d have to get upand go to the bathroom, I never hadtrouble falling back asleep. Being inmy third trimester, getting comfortableenough to sleep was a challenge.My back hurt, my hips hurtand I could only sleep on either myleft side or right side. Lying on myback cut off some blood flow to thebaby, but it also made me nauseous.I had many people tell me thatthis lack of sleep in the thirdtrimester was in preparation for thelack of sleep that comes once thebaby is born. Not to get ahead ofmyself, but I daresay that is not true.Nothing can prepare you for that!And while the baby was growingand hanging out around my bladder,she didn’t cause me any pain. I definitelyhad frequency, but it wasn’teven all that much more than what Iwas used to with IC anyway.My biggest bladder concern duringthis trimester was labor anddelivery. I had to decide what sort ofpain management I wanted to do ifany. I was back and forth. I worriedthat having an epidural would makemy chronic back pain worse (I havea degenerated disc). I was extra worriedabout the catheter that wouldaccompany the epidural and whatthat would do to my bladder. On theother hand, I was also worried abouthow I’d go to the bathroom if Ididn’t have an epidural.I talked to my doctor. He said thedecision was mine, but he alsoassured me that it was the 21st centuryand I needn’t suffer if it was toomuch to bear. He said some womendescribed contractions as not muchmore than menstrual cramps.I talked to my husband. We finallydecided that I’d try to go naturaland play it by ear. If I needed anepidural then I wouldn’t beat myselfup. But, we knew with my luck andhealth history that having an addedmedical procedure increased my riskfor problems.We also met with a labor anddelivery nurse through the hospitalto complete all our paperwork. Italked with her about my bladderconcerns. She did mention that if Ihad an epidural, then I’d have IVfluids. Once I started pushing thecatheter would be removed and theydidn’t usually empty the bladder8 • THE IC OPTIMIST • WINTER 10

again until after delivery. She saidthey often got an entire 1,000 ccsout of bladders.Due to my hydrodistention a fewyears back, I know my bladder onlyholds 600 ccs. She told me to tellthe nurse on duty that information. Iwrote it out on a sheet of paper withother pertinent medical informationto have with me in the deliveryroom. I wanted to be extra preparedin case I wasn’t able to voice myissues.The rest of the third trimester wasrelatively calm. I wouldn’t haveanother ultrasound unless I hadproblems. While I certainly didn’twant problems, I wished I could seethe baby growing inside of me. I didfeel her moving much more andcould even see her moving beneathmy skin, especially when I lay downat night. It was awesome and exciting!Labor and DeliveryWhile I stayed excited, as my duedate neared, I also started to get a bitimpatient. I’m sure this is true forevery mom-to-be. I also started toget anxious. I wondered about delivery.And, I have to admit, I wished Iwould know when it would happen. Ilike to plan things! I did what Icould by preparing the nursery, washingnewborn clothes, freezing mealsand finishing up my work.My due date was Oct. 5. Duringmy final month, I was seeing myob/gyn every week. He continued tomonitor my chronic high blood pressure,which had been doing wellthroughout my pregnancy. In myfinal two appointments, though, itwas slowly creeping upward.During my appointment on Sept.23, my doctor said I was dilated 2centimeters. I had been having someregular sort of contractions that day.But, by that afternoon they stopped.Three days later, I had some regularcontractions again and a bit of afever. I called the on-call doctor atmy ob/gyn’s office, and she had mego to labor and delivery. I spent acouple of hours there, but the babywasn’t on her way.I went home a bit disappointed,Stacey and family!but I also didn’t want the baby tocome before she was ready. By mynext appointment on Sept. 30, thebaby had dropped lower. I wasexhausted and anxious to have herhere.My blood pressure was still creepingup. I was dilated to 4 centimeters.So, my doctor decided to induceme. I was to report to labor anddelivery at 6 a.m. on Oct. 1. My husbandand I, though excited to haveher here, left the office in shock andawe realizing we really were about tomeet our daughter.I showered, shaved my legs andfinished packing my bags that night.We were up bright and early andheaded to the hospital. It was early,but we were excited and running onadrenaline. By about 6:20 a.m., I washooked up to the fetal monitor, anIV with pitocin and an automatedblood pressure cuff.The nurse checked me and said Iwas only barely dilated to 2 centimeters.I was a bit discouraged that myprogress seemed to be going thewrong direction. But, we settled in.Contractions started very soon thereafter.They were coming every fewminutes to start with and then evenmore frequently.I was able to get up a few times togo to the bathroom and that wasn’t aproblem. The nurse showed me howto unhook my monitors so I could goon my own. I especially loved gettingrid of the blood pressure cuff forbathroom trips since it was going offevery 10 minutes and hurt my arm.When lunchtime came aroundand I hadn’t made a ton of progress,my ob/gyn broke my water. It wasn’tthe worst pain, but it most definitelyhurt.By 3 p.m. my contractions weremuch more intense. I was gettingtired and still not very dilated. Idecided to go ahead and get anepidural. I had learned with IC thatpain management is partly mental.My mental side wasn’t doing so well.In fact, I was ready to be finished. Ieven told the nurse and my husbandI was done and didn’t want to do anymore. That’s when I knew I neededhelp.The epidural was inserted. To thisday, I’m still not sure if it worked likeit was supposed to. I could still feel alot and move my legs. They inserteda catheter for me. I requested a pediatriccatheter. My bladder hurt forprobably an hour or two after that. Itwas very uncomfortable. Then finallyit settled down.One thing no one had ever toldme about epidurals is that not onlyare you not allowed to get out ofbed, but you’re also not allowed tomove yourself. So, every 30 minutesor so, I’d have to call the nurse tocome and flip me over. My positionsTHE IC OPTIMIST • WINTER 10 • 9

were very limited. I couldn’t be flaton my back, but I couldn’t be fullyon my side either.I also learned that if you didn’tmove enough to each side, then theepidural wouldn’t get to both sides.At one point, my pain got so intenseon my right side that I thought theepidural had come out.I’d like to say it wasn’t a longnight. But, it was. I was progressingvery slowly. I was able to get a littlebit of rest but not a lot. My bloodpressure was going up, and I endedup with a fever. They gave meTylenol for the fever and those sipsof water were priceless. I wasparched. The baby, however, wasdoing great.After a long night and starting tofeel the contractions more, in spiteof the epidural, I was finally dilatedto 10 centimeters around 4 a.m. andbegan to push. I could feel the contractionsenough to know when topush.Two and a half hours later, mydoctor came in. Evidently the babyhad barely moved. He said he could10 • THE IC OPTIMIST • WINTER 10help me now or let me push a coupleof more hours and then help methen. He wanted to use forceps. I wasexhausted and had no clue what todo. My husband left it up to me. Iwas too exhausted to go two morehours, so I agreed.Things went quickly after that.The doctor used the forceps, then Ihad to give two big pushes and mydaughter entered the world at 6:35a.m. I would like to say I was completelycalm and serene, but I actuallyscreamed. I’m still embarrassed bythat, but all I can say is that I reallydid feel what was happening.All I wanted to know, though, wasif she was indeed a girl and if she wasOK. She was on both counts. Theylaid her a bit on my stomach so Icould see her. I noticed immediatelythat she has my husband’s attachedear lobes! My husband cut the cord,which was short, and then followedher across the room to watch her getcleaned up.Lexiana Faith Shannon was 7pounds, 8 ounces and 21 inches long.She had quite a set of lungs on her.My doctor even commented thatshe’d keep us awake all night.While she was being cleaned up, Iwas getting put back together. As mydoctor was stitching me up, we eventalked about IC and the AmericanUrological Association conferencesI’ve attended.After DeliveryWhile labor and delivery werehard – harder than I’d even imagined– after delivery was most definitelyharder than I thought it would be.I won’t go into all the details, butafter having a baby is like a woman’sworst menstrual flow times three.Along with that, I also ended upwith a hemorrhoid from pushing.The hemorrhoid area is what feltmost sore for me. I was able to takehigh doses of ibuprofen to deal withthe pain instead of pain medicine,which was good. I don’t functionwell with pain medicine. Along withnot feeling well, I also had screamingnewborn to deal with.Lexiana and I had a few issues stillto deal with. I had more than shedid, for which I am thankful. Sheended up with jaundice. We had totake her in for blood work. She wasalso losing weight and not havingdirty diapers. We took her in to beweighed every other day, too. Shewasn’t sleeping at all at night andwould scream most of the night withnothing to comfort her.Fortunately supplementing withformula seemed to help. By the endof the first weekend, we found outthat she wasn’t latching right to eat.She just couldn’t figure out what todo with her tongue. So while Ithought she was eating for the houror so she’d spend at my breast, shewas actually getting very little milk. Istarted pumping and bottle feedingher, and she started doing much better.In the meantime, I ended up nothaving a bowel movement for nearlya week. While that in itself is miserable,the backup was causing extrapressure on all my sensitive parts.And I wasn’t able to eat or drinkmuch, which was a concern as mymilk seemed to be taking longer thanusual to come in.

Is the IC DietMaking You Angry?by Julie Beyer, MA, RDWhen I was first diagnosed withinterstitial cystitis, the one thing Iwasn’t worried about was the dietgiven to me by my urologist. Afterall, I was a dietitian, right? I wasgood at helping other people managetheir special diets, and I was confidentI could do it for myself. I cutout caffeine and eliminated some ofthe more irritating foods like tomatoesand citrus fruits. I drank morewater and avoided heavily spicedfoods.Shortly after my diagnosis, however,I was at a gathering where theonly things on the menu were pizza,soft drinks, and beer. That was whenit really hit me. This is going to bemy life from now on—navigatingfood and drink all day, every day.Instantly, I felt beaten down andbetrayed by my own body. It was adepressing realization that this wasn’tgoing to be as easy as I thought.Maybe you recognize yourself inthat moment of despair and have asimilar story to tell. Today I realizethat my reaction to that experiencewas just one stage toward acceptingmy disease and the lifestyle changesthat go along with it. It is common,in fact, for people who are diagnosedwith a chronic illness to pass throughthe same “Stages of Grief” that werefirst described in 1969 by ElizabethKübler-Ross in her ground-breakingbook On Death and Dying: denial,anger, bargaining, depression, andacceptance.The important thing to recognizeis that Kübler-Ross describes a cyclicaljourney through these stages to astate of acceptance. In fact, somecontemporary therapists have actuallyrenamed this process the “Stages ofAcceptance.” Individuals may experiencethe stages in a different orderand may even re-cycle through thestages before coming to some senseof peace with their situation. In fact,it is not unusual for patients todescribe what they feel as theyaccept their condition as a “new normal.”I have experienced all of thesestages myself, and as a nutritioncounselor, often spend more timeguiding my IC patients through thevarious stages than I do educatingthem on what to eat.Many IC patients seek my helpsoon after they are first diagnosed. Itis not hard to spot those who are indenial about the diet. They begintheir session with statements such as,“Diet pop is the one thing that doesn’taffect me.” Or, “I have had coffee everymorning for 20 years, and it neverbothered me before.” Others figurethat they are already in pain; theymay as well eat the foods they wantto eat, denying the fact that changingtheir diet can go a long waytoward alleviating those same symptoms.Even after a person begins tounderstand how their body reacts tovarious foods, it is not uncommonfor someone to experience denial,and that denial can be truly blinding.A few years ago, I kept runningto the urgent care convinced that Ihad a bladder infection. After thethird visit, I realized that my symptomswere probably being caused bythe grapefruit I was eating nearlyevery day! If anyone knew better, Idid, but that is how powerful denialcan be!Anger is another stage that can behard to break through. Sometimespatients are angry at family membersbecause they don’t have to watchtheir diets as carefully. Chronic painand lack of sleep often intensify feelingsof anger, making it harder forpatients to make good food choices.The one thing I remind patients,however, is that they are not alone.Almost everyone does or shouldmake better food choices for one reasonor another whether they areoverweight, diabetic, or have a historyof heart disease in their family.Another common situation I facewith patients is bargaining. In manyways, a person has to be “ready” tomake a change, especially when itcomes to something as personal asfood choices. Patients will try tocompromise by saying, “I will do any-12 • THE IC OPTIMIST • WINTER 10

thing you say except give up my tea.”Or, they will procrastinate changingtheir diet saying that they will startan elimination diet after their son’swedding (or after the cruise, or aftergraduation, etc.) What sets bargainingapart from denial is the idea thata person is willing to recognize thatthey need to change. Bargaining orcompromising can be a way for thatperson to ease into the changes slowly.The fourth stage defined byKübler-Ross is depression. Now youmay want to argue that depression ispervasive throughout the process,and you would be partially right. Butthe defining characteristic of thedepression stage in the cycle of griefis “pre-acceptance”—the idea that theperson has generally accepted theircondition, but is experiencing heavyemotions about it. Many IC patientsactually get stuck in this phase for along time, especially when it comesto their food. They may follow theirdiet, but feel beaten down, or resoluteto never enjoying food again. Ifyou find yourself stuck in this stage,take baby steps to educate yourself.Attend support groups or visit theICN message boards to learn howother people are coping with the ICdiet. Surround yourself with goodresources that provide you withrecipes and menu ideas. A great wayto break out of this stage is to try onenew recipe a week. That one simplechange can help you realize thatyour situation is not hopeless, andthat you really can enjoy food again.Finally, what does dietary acceptancelook like to an IC patient? Asyou may guess, this depends entirelyon the person, but I like to think ofit as a more active, peaceful stagethan the previous four. In short, peoplewho finally accept their situationBladder Problems?Enjoy everyday life,again!Some foods are keeping many people from doing thethings they once enjoyed. Are you one of the many whoavoid car rides, little league games, movies and familydinners because of the effects of acidic foods?Many people are highly sensitive to food. For some,various foods can cause occasional heartburn, for othersthe "hidden irritant" in foods can exacerbate urinaryproblems or bowel distress. In most of these cases, theproblem lies with the unsuspected acid in the foods.Prelief is a safe, effective over-the-counter product thatcan help you stay comfortable. Prelief works by taking theacid irritant out of foods, so these foods are less likely totrigger problems. With Prelief you can enjoy life again.Go ahead...take that long car ride, cheeron your favorite little leaguer andwatch the entire movie. A tripto the grocery store won't haveto include a map to the restroom;a family dinner can be longand lingering!Available in the antacid section atAlbertson's, Eckerd, Long's, Meijer,Osco, Publix, Rite-Aid, Savon,Walgreen's and many other fine stores.Also available by phone or www.prelief.com.Once a personrecognizes that dietcan make a difference,they can focus theirenergy on determiningtheir personal triggerfoods.become more engaged in the processof helping themselves. Once a personrecognizes that diet can make adifference, they can focus their energyon determining their personaltrigger foods, researching newrecipes, and creatively finding substitutesfor foods they may be missing.Patients who accept the fact thatthey need to change their diet areoften vocal advocates of the IC dietand reach out willingly to help otherpatients.Do you remember that social situationI told you about with the pizza,soft drinks, and beer? Well, ten yearslater, I can honestly tell you I havegone through all of these stages—some multiple times. I still strugglewith the fact that one strawberry canput me in a flare, but to be honest,my diet is probably much healthiernow than it was before I was diagnosedwith IC. I am able to see theIC diet and other lifestyle as challengesrather than burdens. I havedeveloped numerous coping strategiesto help me navigate food choices,preparation, and eating awayfrom home. And eventually, workingpersonally with the IC diet gave methe confidence to reach out and helpother IC patients through the ICNforums and the Confident Choices books.¨Safe. Reliable. Effective.CALL 1-800-994-4711for literature and a couponP0212 ©2005 AkPharma Inc.Julie Beyer, MA, RDAuthor: Confident Choices:Customizing the Interstitial CystitisDiet and Confident Choices: ACookbook for Interstitial Cystitis andOveractive BladderTHE IC OPTIMIST • WINTER 10 • 13

Can a Medication Trigger an IC Flare?by Molly Hanna-Glidden14 • THE IC OPTIMIST • WINTER 10When a sudden IC flare begins,we’re often puzzled about whatstarted it. Was it a long car ride??Intimacy?? That secret bite of chocolate??Ovulation??? You may be surprisedto learn that some flares canbe triggered by medications, includingsimple over the counter coldmedicines to a newly prescribedantibiotic. Symptoms of frequency,urgency, pressure or pain can occurwithin 30 minutes of taking the irritatingproduct.During a recent support groupmeeting, an IC patient mentionedshe had tried 8 different medicationsto help lower her cholesterol. Witheach brand she tried, she developedmore severe bladder symptoms. Aftermuch difficulty, she found alternativeways to reduce her cholesteroland is now symptom free. AnotherIC patient in attendance had noproblem taking his cholesterol medication.This drives home the pointthat drug sensitivities and reactionsare very individual.Another point to be aware of isthat drugs come in many forms andvariations. For example, hydroxyzinepamoate (aka Vistaril) is often moreeasily tolerated than hydroxyzineHCL (aka Atarax). Patients havereported that some stronger antibiotics,such as Augmentin, can bevery irritating where as other mildermedications are more bladder friendly.Chemotherapy can involve veryharsh medications which are notoriousfor irritating the bladder. One ICpatient being treated for breast cancerreported she was able to tolerateTaxol and Herceptin treatment butfound Cytoxin very bladder irritating.It’s also worth noting that it maynot be the medication at all triggeringthe flare, but the dyes, fillers andinactive ingredients included. Somepatients may discover that a medicationthey’ve taken over time withgreat success suddenly becomes bladderirritating. Why?? The formulamay have changed or, perhaps, thepharmacy could be using a new, differentmanufacturer. This is particularlytrue with generic medicationsthat are often rotated by pharmacies.Patients who are extremely drugsensitive might find a “compoundingpharmacy” to be helpful. Compoundingpharmacies custom make medicationsfor patients with or withoutvarious fillers. Larry Maida RPh CP,a compounding pharmacist, offered“We work closely with physicians tocreate drugs that can meet a particularpatient’s needs, including the useof different dosages and routes ofadministration, such as transdermalgels.” For example, many womenwho try using brand name estrogencreams report that it burns the vulvaor vagina. Why?? The brand namemedications often use harsh preservatives,such as propylene glycol. Anoption worth trying is a preservativefree estrogen cream made by a localpharmacist.Of course, drug sensitivity variesfrom person to person and if you’vestruggled with side effects in thepast, you’re probably very cautiousabout trying new medications. Askyour doctor for a small sample beforeyou leave the office so that you cantest your sensitivity. If no samples areavailable, ask your doctor if he wouldwrite you a prescription for a smallamount (perhaps a weeks worth) ofmedication so that you can test yourtolerability to it before you have toinvest in a months supply.One point to remember. If a pillhas an imprint of a line down themiddle of it (i.e. it’s scored), it maybe possible to cut it in half. In fact,some prescriptions ask that you onlytake half a pill. However, before youreduce any dosage, you should verifywith your doctor if this would beadvisable for you.Do NOT stop important medications,such as thyroid or blood pressuremedications (to name a few), toavoid irritating your bladder. Yourlife could be a stake. You must speakwith your doctor first. Share yourconcerns and experiences. Do nothide or ignore any unusual reactionsyou may have had. Tell them that itis bothering your bladder badly andthen ask “Is there an alternative medicationor generic that I can try?” or“Is there a different dosage that I couldtry?”Taking charge of your health isvital. Once you find what medications,if any, are right for you, youcan gain strength and live well inspite of your IC!Molly Glidden is co-author of thebook PLEASE UNDERSTAND –The Interstitial Cystitis Guide ForPartners, now available for purchasein the ICN Shop.More Drug Tips1) When picking up a refill, look forany change to the medication, includingcolor, size, brand or manufacturersname. Be vigilant. If a flare-upoccurs, check with the drug manufacturerfor any possible change made tothe medication.2) Keep a record of medicationsthat do irritate the bladder.3) Report any drug side effects orcomplications to the manufacturerand the FDA (http://www.fda.gov)How to Find a Compounding PharmacyMost communities have at least one compounding pharmacy available. Checkyour yellow pages or ask your doctor for a referral.There are also some pharmacies that provide mail order services, including:• Maida Pharmacy – Arlington, MA- 1-781-643-7840;http://www.maidapharmacy.com/• Women’s International Pharmacy, Arizona & Wisconsin - 1-800-279-5708;http://www.womensinternational.com/• Market Compounding Pharmacy- Northridge, CA –1-800-771-1110;http://www.marketcompoundingpharmacy.com/

An IC Disaster Kitby Jill Osborne, MALiving in Northern California,I’ve experienced several scary earthquakes,the worst of which was theLoma Prieta quake that collapsedseveral freeways years ago. InJanuary, we had another substantialquake just a few hundred miles frommy house. Water mains broke, houseswere knocked off foundations andgas leaks filled the air. Yet, the communitywas prepared and had greatemergency services. There was noloss of life. Such are the riches thatwe have that the people of Haiti donot have.I cannot verbalize how badly I feelfor those victims who are currentlyfighting for their lives. They havedone nothing wrong. They didn’tdeserve what has happened to themand I hope that you’ve made even asmall donation to help them recoverfrom this horrific tragedy.We’ve been told to expect a verylarge earthquake, similar to 1906, inthe next fifty years and we have tobe prepared, particularly those of uswith medical conditions. Do youhave a disaster kit for your home andfamily should you suffer a naturaldisaster?? More importantly, haveyou thought about how that couldaffect your IC?Several years ago, I created onefor my home with supplies for myelderly parents, two elderly neighbors,my pets and myself. It sits in avery large plastic container outsideon our deck. I thought I’d take amoment and share some of its contentswith you. It has cost maybe$100 to put together so far but it isworth it!Reading Glasses - Don’t underestimatethe importance of settingaside a few old pairs of glasses forfamily members who require them.Water Supplies - In addition toseveral cases of water set aside in ourgarage, our kit includes two water filtersso that, if needed, we can usewater from local creeks or lakes.Non-perishable Food - I includedboth canned and packaged campingfood and energy bars. Don’t forgetcan openers. Of course, we also havea plentiful supply of canned foods,flour and sugar in our garage provided,of course, that we can get to it.A Way to Cook - A smallpropane powered grill and two extrapropane bottles. Cans of sterno toheat pots to boil water and makesoup.Clothing - Changes of clothing,extra socks and sturdy shoes.Light source - Flashlights andmany extra batteries of all sizes.Communications - Battery poweredor wind-up radio.Medical Supplies - An extensivemedical kit with pain medication,antibiotics, OTC pain relievers,aspirin and more.Sleeping - Thermal blankets,sleepings bags, tent & Aero beds orpads.Personal Hygiene - Soap, detergent,antibacterial gel and shampoo.Don’t forget plastic bags for sanitationand disposal.THE IC OPTIMIST • WINTER 10 • 15

Paper supplies - including toiletpaper, Kleenex and paper towels.Restroom Supplies - TravelJohnsfor restroom access and femininehygiene supplies. In a pinch, menstrualpads can be used for woundcare.Pet Supplies - including wet food,dry food and cat litter.For your IC, I encourage you tothink about what you need on adaily basis. The one time use heatingpads are a great idea. I think I’ll puta ten pack in there to help not onlywith pain but to keep people warm.I think I’ll search the web forsome of the bucket style portablepotties because I can’t expect myelderly parents with bad hips toIC FriendlyEzekiel Breadsquat over a hole in the ground. Youcan actually use a toilet seat on topof a large plastic bucket in a pinch.Having periwash bottles on handor intimate wipes can help preventbladder infections when water isn’tavailable. Antibacterial gel to washhands is a great option.Of course, copies of your prescriptionsare essential but perhaps havingsome of the OTC products onhand, like AZO Bladder Pain ReliefTablets might be a good idea. Ifyou’re prone to yeast infections, havinga package or two of OTC yeasttreatment makes sense,Several extra pairs of underwearand mini pads will come in handy,particularly if you struggle with anyleakage.I have to say that I’m always surprisedto find people here who donot prepare. I don’t understand why.I am the principal care giver in myfamily at this point in time. It’s myjob and I’m going to try to protectthose around me.Do you have any other suggestionsfor an IC Emergency Kit?? If so,please send them to me at: jill@icnetwork.com.I’ll be keeping a runninglist on our website for patientsto print out.So far, the year 2010 is prettyrough. Let’s hope things calm downin the coming months.When a patient asks us to recommendan IC friendly bread, wealways say “Try Ezekiel Bread.”Made by Food For Life, this highfiber, high protein and kosher certifiedbread is not only IC friendlybut also IBS friendly. Why?? It’s notmade with heavily processed flourthat can concentrate allergens nordoes it contain any additives, artificialcolors or preservatives that canirritate the bladder. Rather, it’smade from the actual sprouts ofseveral grains and legumes, includingwheat, barley, beans, lentils,millets and spelt. When these aresprouted and combined, a completeprotein is created.In my twenties, I developed foodsensitivities and IBS that wereexacerbated when I ate typicalwhite grain breads and cereals. Iwould become very bloated, gassyand nauseous for hours after I ate.Some breads even triggered anirregular heart rate for me. Ezekielbread has been a lifesaver. My sensitivebody loves this rich, nuttybread. It comes frozen but oncedefrosted has no “freezer burn.”Every morning I have two pieces ofEzekiel toast or, my personalfavorite, French toast. It makestasty grilled cheese sandwiches too!But, Ezekiel has an unexpectedbenefit, it is low glycemic and carriesthe Diabetic Friendly seal. Ifind myself much more satisfied andless likely to snack afterwardsbecause it lacks the insulin rushthat high glycemic breads trigger.It’s also high in fiber, ideal forpatients who struggle with occasionalconstipation.For patents who have gluten sensitivities,Ezekiel bread could alsobe an option. According to theirwebsite “Any product that containswheat (including semolina, durum,spelt, triticale, and kamut) rye, barley,or oats cannot be consideredGluten-Free. What is important is thesprouting process, through enzymaticactivity, changes gluten to a moredigestible or tolerable state. Manyindividuals with mild gluten sensitivitiesuse sprouted products with noadverse side affects or allergic reactions.”Obviously, if you do strugglewith celiac disease or any glutensensitivity you should talk withyour doctor before consuming anyproduct that may contain gluten,including this bread.Food For Life products(http://www.foodforlife.com),including their breads, muffins,pasta and cereal can be found invarious natural health stores andsome mass market grocery storesacross the nation. Visit their websitefor a list of resellers.-Jill Osborne16 • THE IC OPTIMIST • WINTER 10

Book Review:Ending Female Pain -A Woman’s Manualby Jill Osborne, MA“Ending Female Pain - AWoman’s Manual” by Isa Herrera,MSPT is a ground breaking book forwomen with pelvic and sexual pain,containing dozens of easy, helpfulexercises and tips that offer hope forpatients with pelvic floor problems,vulvodynia, IC, etc. etc. This bookgives you vital, easy and effectivestretches, exercises and tips to helpyou take control and manage yourpelvic pain symptoms.Her discussion of pelvic anatomyis amazing. Yes, my friends, you willneed to get a mirror. She’ll walk youthrough an excellent and absolutelyfascinating anatomy lesson so thatyou can see, with your own eyes, ifyour pelvic floor is tight, relaxedand/or if you’re doing your reversekegel or kegel exercises correctly.She teaches you how to find andreduce trigger points in your pelvicfloor. She offers massage tips thatare easy and very effective at reducingadhesions around c-section andother surgery scars, including episiotomies.Her discussion of thevulva and vulvar skin techniques isprobably the best we’ve read.“Thanks to Bladder-Q,I have my life back again.”—Antoinette JeanNATURAL - SAFE - EFFECTIVEMoney Back GuaranteeLearn more at www.thenaturalbladder.comUsing both pictures and diagrams,she offers a series of exercises andstretches for the relief of pelvic pain,including reverse kegel exercises, aGREAT series of exercises using apilates ball, several yoga positionsthat stretch out the pelvis, upper legsand lower back and several foamrolling techniques.For those of you who work at acomputer or at a desk all day andstruggle with back and tooshie discomfort,she offers a series of easy,discrete stretches you can do at workto help you reduce muscle stress andtension.What makes this book trulyunique and a must read for anyonewith IC and pelvic pain, is herpractical discussion of sex and howto reduce discomfort. Her tips aresuperb... from performing a reversekegel exercise before intimacy tohelp reduce pelvic floor tension, tousing vaginal dilators for patientswith vaginismus to a very unusualand obviously effective “vaginalsteam” that can help make intimacymore comfortable.Now available through the ICNMail Order Division for $29.95 (15%off for Angel Subscribers).THE IC OPTIMIST • WINTER 10 • 17

Hot Drinksto WarmYour SpiritsLast November, we announced aHot Drink Contest on our website togive IC patients more tasty ICfriendly options for the cold monthsof winter. The response was wonderfuland we’re delighted to share severalnew ideas with you. Please notethat some recipes may use low acidor herbal coffees that are clearly forpatients who are more diet tolerant.You’ll also find some recipes that areideal for patients who are very dietsensitive. These recipes excludesome ingredients that could be moreirritating such as coffee, soymilk orwhite chocolate.White ChocolateVanilla Bean “Cocoa”with Cinnamon Whipped CreamBy ICN Member n2indigoky3 cups whole milk1 cup of good quality whitechocolate, chopped1 vanilla bean (I use a Madagascarvanilla bean)sugar or honey to taste1 cup whipping creamdash cinnamonPut milk in saucepan and split vanilla bean, scrape out the middleand add the whole bean and scrapings to the milk (and or brewed coffee).Slowly bring to a boil, add white chocolate and then top withfresh whipped cream with a dash of cinnamon.* You can also use Tyler’s no acid coffee to make this a latte which isdelicious! (add 1 cup of coffee in lieu of one of the cups of milk)18 • THE IC OPTIMIST • WINTER 10FIRSTPLACE!SECOND PLACE:Pumpkin Pie LatteBy ICN Member Daisy1-2 tbsp canned pumpkin2 Tbsp vanilla extract1/4 tsp cinnamon1/4 tsp ginger1 cup your choice of milk (soy orregular)1 tbsp Silk creamer, optional3 tsp honey, sugar or sweetenerto taste1/2 cup strong low acid coffee orherbal coffee substituteIn a saucepan, heat milk, Silkcreamer, sugar and pumpkin pureeuntil steaming. Stir in vanilla,cinnamon and ginger. Remove fromheat, blend with a hand blenderuntil thick and foamy. Pour into alarge mug, along with the brewedcoffee. Top with a sprinkling ofground nutmeg. Serves 1.

THIRD PLACE:Hot Pear CiderBy ICN Member OllieRAuthor’s Note - I hate pear juicecold, but warm it with spices and ittastes quite delicious! This is a recipe fora sweeter tasting cider... perfect fordessert or a morning treat. If you likemore flavor you can add a little more ofeach ingredient.For a single mug of pear cider:1 Mug worth of pear juice1/2 Tbsp cinnamon1/2 Tbsp ginger1/2 Tbsp allspicedash of nutmeg1-2 Tbsp white sugar*Heat pear juice to a little less thanboiling on stove or in microwave.Add in the cinnamon, ginger, allspice,and nutmeg and stir. Whenthe beverage is nice and hot stir inthe white sugar until it dissolves. Ido not dilute the pear juice and itdoes not bother my IC. I use RWKnudsen pear juice, which is availablein the ICN Mail Order Centerin juice box form.Peanutbuttery Butterscotch DreamBy ICN Member Ollie R3/4 mug milkRounded tablespoon of peanut butter20-30 butterscotch morsels to tasteMini marshmallowsMeasure out the mug of milk andpour it on a saucepan to heat onmedium high. While the milk iswarming, heat the butterscotchmorsels in a small microwave safebowl on high for about 25 seconds.Take out and combine it with thepeanut butter. Stick the whole mixtureback in the microwave for 20-25more minutes until very melted andnearly runny. Pour the mixture inthe bottom of the mug, pouring theheated milk on top when it is ready.Mix well, it will take a little bit for itto all dissolve together. Top withmini marshmallows.Coconut Cream CaramelBy ICN Member Carole1/2 cup organic coconut milk1/2 cup milk2 Tbsp caramel syrup or more totaste (I use Smuckers syrup butwhatever one you can tolerate)Heat above ingredients to boiling.Garnish with fresh whipped cream,shredded coconut and drizzle syrupon top.Mexican Hot “Carob-Cocoa”By ICN Member LoveslifeAuthor’s Note - I’ve always lovedMexican hot chocolate but obviouslycan’t have it now. So I came up withthis alternative that is incredibly closefor me to feel pretty happy with a mugin front of me! I think the carob hasenough bitterness of true cocoa and thewhite chocolate obviously balances outthe flavor with its cocoa butter. What’sreally nifty is that I’ll zip up the portionsin a ziplock back and when I’m at myfave coffee house, I’ll have them throwit in my mug and give me a hot steamedmilk and I can hang with the crowd!2 cups whole milk2 Tbsp Carob powder4 Tbsp white chocolate chips (try tofind ones that actually containcocoa butter without junk. TraderJoe’s has some great ones right now)1/4 tsp cinnamon (You need to knowif you can tolerate it)Put all in a pot and bring to a lowsimmer, stirring to melt the whitechocolate and blend the ingredients.Pour into your favorite mug andenjoy!Eggnog LatteBy ICN Member LovesLifeAuthor’s Note - I’ve already takenmy favorite eggnog and just warmed itup which is quite yum but then decidedto make a Latte with it using my coffeesubstitute and it is decadent. Of courseyou need to find an eggnog that you cantolerate or make your own. Fortunatelyfor me, I’ve done okay with TraderJoe’s eggnog. There’s also other organicnogs that have even less stuff in thembut I guess it just comes down to knowingwhat you can tolerate.1/2 cup of eggnog of your choicewarmed up in a pan (I’ve done it inthe microwave but it comes outlooking funky until I beat it, so Ithink it’s better in a pan)1 cup of strong Teecino, acid freecoffee, or other coffee sub. (I useMaya teecinno or 1/2 Trader Joe’sreduced acid coffee and teecinnotogether).1 tsp sugar or to tastepinch of nutmegdollop of whipped creamBeat the eggnog with a miniblender. Pour the coffee in your mug,add the eggnog, stir in sugar, add thedollop of whipped cream and sprinkleon the nutmeg and enjoyWhite Peppermint PattyBy ICN Member Soupey28Author’s Note: This delicious holidaydrink is something that you can drink allyear long! I love white chocolate and it’sa great alternative to cocoa (plus thepeppermint relaxes my bladder andmaybe that can help you)!1 ounce white chocolate (orchocolate alternative)1/4 tsp peppermint extract8 oz. milk2 tsp white sugarIf you decide to serve for guestsyou can always add in a peppermintor cinnamon stick for flavor and decoration.Hot (or Cold) Pumpkin Pie MilkBy ICN Member IcyJunoMary4 cups 1% organic milk1/2 cup canned organic pumpkin1/4 cup or less organic sugar - totaste1/2 tsp cinnamon1/2 tsp ginger1/4 tsp nutmeg1/4 tsp clovesTHE IC OPTIMIST • WINTER 10 • 19

Mix all together in a blender andthen pour the amount that you wanthot (say one cup) into a saucepanand heat and stir until it is hot.Microwaving makes it foam up andall over your microwave!!! Store theunused portion in the refrigerator.Omit any of the spices that botheryour IC. Add a dollop of low fatwhipped cream if you like and it willtaste like you are having pumpkinpie to drink. I like this cold as well.Mocha Free Mocha LatteBy ICN Member LovesLife8 oz. of strong Maya Caffe Herbalcoffee or Teecino (I use 2 scoops inmy small french press)1 Tbsp carob powder8 oz. whole milk1 tsp vanilla1 to 2 Tbsp raw sugar (depending onhow sweet you like it)Put the carob powder, vanilla andsugar in a tall mug. Pour in the hotTeecino. Stir to blend. Microwavemilk for 2 to 3 minutes (dependingon your microwave) until very hot ina large pyrex measuring cup. Put awire whip into the cup and spin itbetween your hands (as if you’re rubbingyour hands together) until yourmilk gets real foamy. Pour most ofthis on top of your Teecino mix. stirto blend. Top with remaining foam.Enjoy!White Hot ChocolateBy ICN Member Percy1 cup whole milk1 cup half and half1/4 lb. white chocolate (chopped orchips)1/2 tsp vanillapeppermint sticksHeat milk and half and half onmedium just below a simmer.Remove pot from heat and add thewhite chocolate. When the chocolatehas melted add the vanilla andstir. Reheat very gently. Serve with apeppermint stick as a stirrer.Karen’s Hot Cinnamon TeaBy ICN Member Kagey2 quarts water2 or 3 cinnamon sticks1 or 2 tsp ground cinnamonHeat 2 quarts water in microwaveto boiling. Drop cinnamon sticks inwater and let steep. Add 1 or 2 teaspoonsof ground cinnamon. Use aquality cinnamon from Saigon orVietnam, it tends to have a sweetnessto it. Enjoy!!Stabbing, burning, piercing bladder pain? Don’t suffer in silence.A Clinical Research Opportunity: Join in the quest to advance new pain medicines for InterstitialCystitis/Painful Bladder Syndrome (IC/PBS)There are currently few good treatments to treat IC/PBSpain and other symptoms. New medicines are needed. Yetthis can only happen through clinical trials and the willingnessof those living with IC/PBS to take part.A new clinical trial is now enrolling patients with IC/PBSpain. If you suffer from moderate to severe pain associatedwith IC/PBS, please consider this an invitation to take part inan important clinical trial.This clinical trial is designed to see how well a studymedicine for pain works at reducing moderate to severeIC/PBS pain. It will also explore the affect of the medicine onurination frequency and urgency.For a limited time, and in several countries, this IC/PBSclinical study is screening people over age 18 years old withIC/PBS. Once approximately 300 IC/PBS patients haveenrolled in this study, this clinical research opportunity isplanned to close.If you qualify for the study, you will receive 2 subcutaneousinjections of the study medicine or placebo (dummymedicine) at the clinic on two study visits. Over the 24-weekstudy period, after a screening process, you will need to visitthe study center 7 times with at least 3 telephone contactsfrom the research site.To qualify, you must:• Be at least 18 years or older• Have had IC/PBS symptoms (including pain) for at least6 months• Agree to attend the required clinic visits for 24 weeksafter screening, and follow the treatment plan carefully• Agree to keep a daily diary of your symptoms• Undergo cystoscopy unless you’ve had this procedurewithin the past two yearsIf you qualify and agree to participate you will:• Possibly gain more knowledge about your IC/PBS andhow to manage it• Have a greater chance (80%) of receiving the studymedicine, and less of a chance (20%) of receiving theplacebo (dummy medicine)• Keep a daily diary that will carefully monitor your painand other symptoms• Receive medical tests help you learn about your bodyand its response to the study medicine• Possibly be compensated for travelVisit www.BladderPainStudy.org today to see if you mightqualify.20 • THE IC OPTIMIST • WINTER 10

Self-Help Tip of the Month:The UltimateIC FriendlyBathroomby Jill Osborne, MAWhen I start a New Year, I like toget organized. It’s out with the oldand in with the new and thatincludes my bathroom where, likemost IC patients, I spend a considerableamount of time. Having IC ischallenging and I want to make surethat I have some small pleasures thatwill make those restroom momentsmore bearable. To avoid unnecessarybladder infections, I also need tomake sure that my bathroom staysclean. Here are some ideas!1. Linens That Comfort You!We all have thin towels and rugsthat have seen better days. Once ayear, donate your old, ratty towelsand/or rugs to your local animal shelterand buy yourself some soft, warmand cozy towels and mats. Keep towelsclean by washing atleast twice aweek. If it’s been sitting, damp onyour floor or sink for more than aday, it needs to be washed. To reduceskin irritation, we suggest using IvorySnow or Dreft as laundry detergents.2. Candles To Please You! Ifyou’re like most IC patients, youprobably have a very sensitive senseof smell and the smells that botherus the most usually originate fromthe bathroom. Yet most bathroomsprays are just too strong. Look for agently scented citrus scented candlelike orange or grapefruit for a cleanfresh aroma. If you need a spray, tryOzium brand sprays which reducesmells immediately yet don’t lingerin the air. Avoid strong scent products,like Glade or Febreze. These areoften very irritating to our sensitivenoses.3. Soaps That Don’t IrritateYou! With our sensitive skin and/orvulvodynia, most mass market soapsare too harsh for our skin. The ICfriendliest soaps to use in the showeror bath are Basis for Sensitive Skinor a plain Dove Bar. At your sink,you might find bar soaps too messy.We like to use liquid soaps for ourhands, preferably those for sensitiveskin. The Rainbow brand is perfect ifyou can find it.4. Tissues That Please You!There’s nothing worse than needingto use the restroom only to discoverno toilet tissue. Yikes!! Buy toilet tissuein bulk and always keep at leasttwo new rolls in your bathroom. Youmight consider trying unscented,flushable moist wipes from Natracareor Seventh Generation for an extrasoothing experience. Patients strugglingwith vulvodynia might findfacial tissues softer than regular toilettissue however, if used in quantity,may cause clogs in pipes.ICN member GoldFinch has adaughter with a very sensitive nosewho finds facial tissues irritating. Shesuggests cutting up some old t-shirtsor cotton sheets for use when youhave a runny nose. Simply wash inhot water and then reuse.5. Water To Soothe You! If youstruggle with “urine burn,” vulvodyniaor rectal discomfort, a periwashbottle is a must addition to your toiletroutine. Simply fill with waterand rinse off your sensitive areaseach time you use the facilities. Notonly will this calm and soothe yourvulva and perineum, it also helpskeep bacteria at bay.6. Heat To Relax You! One ofthe most comforting things you canuse during an IC flare is a heatingpad. Once a year, buy yourself a newelectric heating pad (make sure itTHE IC OPTIMIST • WINTER 10 • 21

has a timer or automatic turn off forsafety). Consider buying amicrowaveable pad with a washablecover as well for those momentswhen electric won’t work. If youhave a cold bathroom, consider buyingone of those small space heatersto warm your toes.7. Soda For A Sitz Bath! MostIC patients have learned quicklythat bubble baths and gels can bevery irritating. So, what do you putin your bathwater for a comfortingsoak?? We suggest that you use bakingsoda (1/2 to 1 cup) for an extrasoothing sensation. Some patientslike using Aveeno as well!8. Cleanliness Counts - Thecleanliness of your toilet area canhelp prevent painful bladder infections.Use clean towels for yourhands and body and wash these regularly.Dispose of trash. Using a disinfectantwipe, wipe down your sink,toilet seat and toilet rim atleasttwice a week. Scrub the inside ofyour toilet atleast once a week witha toilet brush. Wash bathroom floorsat least once a week. Look for environmentallysensitive cleansing supplieslike those from SeventhGeneration.Bathtubs require special attention,especially if they have bubble jets.Follow your manufacturers instructionsand clean the jet pipes regularlyas they have been proven to harborbacteria.9. Remove Clutter – We’ve allseen the old bottles of shavingcream, toothpaste and/or perfumesitting lined up along the sink inyour bathroom. They’re so dusty, it’sobvious they haven’t been touchedin years. It’s time to clear the clutteron your sink, shelves and drawers!Throw out items past their expirationdate. Eliminate as many jars asyou can from your sinks and bathtubs.Your goal – a clean sink areathat’s pleasing to the eye and nose!10. Dispose of Old Medications– Medications and OTC productsthat have passed their expirationdate should be disposed of promptly.Failure to do so could endanger yourlife because some medications canbecome harmful or ineffective overtime. Once a year, go through yourmedications, cough drops, shampoosetc. and purge the old, expired items.Some pharmacies accept medicationsfor disposal.Yes, it might take you a few hoursto get your bathroom organized forthe New Year, but it’s worth it in thelong run! Ideally, we want your bathroomto be a clean and soothingrefuge. A lighted candle, a warmshower, cozy towels and a warm robecan work wonders for your spirit. Youdeserve it! Enjoy!The low-friction catheter...for a smooth insertion and withdrawal.With the LoFric H2O, using a catheter is easierand more discreet than ever.• Slim & lightweight design• Hygienic & convenient• Folds down to fit inside a shirt pocketThe LoFric catheter has been on the market for more than20 years and its reliability has been proven in numerousclinical studies. It’s the only one in its class—reduces urethralfriction up to 95% compared with other catheters, which helpsreduce the risk of infections and long-term urethral complications.Call today for a free sample, toll-free: (877) 456-3742.GIVE US A TRY!22 • THE IC OPTIMIST • WINTER 10

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About UsThe Interstitial Cystitis Network is a health education company dedicated to interstitial cystitis and other pelvic paindisorders. Our mission is to present the best research, information, and support directly into the homes and officesof our users (patients, providers & IC researchers). In addition to our magazines and newsletters, the ICN offerscomprehensive support services for patients in the USA and Canada, including the ICN support forum(www.ic-network.com/forum/), bimonthly live support chats (www.ic-network.com/chat/), our patient assistance phoneline and the “Living with IC” educational video series currently available on YouTube (www.youtube.com/icnjill/).Our contact information:Interstitial Cystitis NetworkPO Box 2159Healdsburg, CA 95448 USA.Orders: 707.433.0413Patient Assistance: 707.538.9442FAX: 707.538.9444Facebook: www.facebook.com/icnetworkTwitter: www.twitter.com/icnjill/The IC Optimist is published four times a year and isavailable by US Mail ($60/year) or e-mail ($30/year).Professional subscriptions are also available.Material contained in the IC Optimist is copyrighted, allrights reserved. It may not be reproduced in whole, or part, withoutadvance written permission. Reprint requests shouldbe directed to: newsletters@ic-network.comWhat is IC?Interstitial cystitis (IC), also known as painful bladder syndromeor bladder pain syndrome, is a condition that results in recurringdiscomfort or pain in the bladder and the surrounding pelvic region.The symptoms can vary greatly between individuals and even for thesame person throughout the month, including an urgent need tourinate (urgency), a frequent need to urinate (frequency) and, forsome, pressure and/or pelvic pain. People with severe cases of IC/PBSmay urinate as many as 60 times a day, including frequent nighttimeurination(nocturia).Pain levels can range from mild tenderness to intense, agonizingpain. Pain typically worsens as the bladder fills and is then relieved after urination. Pain may also radiate to the lowerback, upper legs, vulva and penis. Women’s symptoms may fluctuate with their menstrual cycle, often flaring duringovulation and/or just before their periods. Men and women may experience discomfort during or after sexual relations.IC affects patients of all ages, races and cultures. It is found on every continent in the world. Though it was previouslythought to be a disease affecting mostly women, new studies suggest that men suffering from chronic non-bacterialprostatitis may also have IC, thus dramatically expanding the population data. It is not unusual for IC to run infamilies, nor for patients to struggle with a syndrome of related conditions including: IBS, anxiety disorder, vulvodynia,pelvic floor dysfunction, allergies, migraines and fibromyalgia.There are many treatments and self-help strategies now available that can help improve bladder symptoms dramatically.One excellent place to gather information is on the IC Network website (http://www.ic-network.com), where you canread extensive articles on IC as well as participate in our support forum and chats.We welcome you! We believe in you! You are not alone!THE IC OPTIMIST • WINTER 10 • 27

My Mom HasInterstitial CystitisA PAINFUL BLADDER STORYAges 6+includes ten funhome activities &a big word hunt!Helping children understand IC, bladder basics,the IC diet, doctor visits, medication safety andhow they can help around the house.Written By Jill Heidi Osborne, MANOW AVAILABLE$12.50 in print - $10 by email