Q Q + A naJill Osborne, Nheyo & Gwaro reInststal Cystitis Network
Izvo zvinotevera zvinobva mubvunzurudzo naJill Osborne, Nheyo & Gavhuna we Interstitial Cystitis Network:
Mubvunzo: Ndapota ndiudzei nezvemashure enyu uye kufarira muInstitial Cystitis (IC).
A: Ndinonyanya kufanana neC IC varwere. Ndaive nemakore 32 apo zviratidzo zvangu zvakatanga. Kakawanda pamwedzi, ndakaona kurwadziwa kwakanyanya, kusagadzikana, uye zvinodiwa kuti urinate nguva dzose , kunyanya usiku.
Asi kunyange zvazvo zvakanzwika sehutachiona , mabhakitiriya haana kumbowanika mumuti wangu.
Zvakatora gore kuti ndiongorore IC yangu. Pakazosvika zhizha ra1993, ndakanga ndisingakwanisi kutenderera bhokisi pasina kuchema. Kutyaira kwaive kwakaoma, basa rakanga risingaiti, uye ini (semamwe varwere veC IC) ndakaona kurwadziwa kusingagadziki. Kunyange zvazvo ndakanga ndine unhu hwakanaka hwehuroyi , ndainzwa ndiri ndoga uye ndoga. Zvadaro, rimwe zuva, ndakataura nemumwe murwere IC pafoni. Kwekutanga, ndainzwa kuti mumwe munhu ainyatsonzwisisa mamiriro angu. Ndakadzidza nzira dzakasiyana -siyana dzokubatsira uye zvirwere zvinowanzoitika zvakaguma zvindipa ruzivo rukuru. Chikuru chezvose, ndakapiwa chipo chetariro.
Ndakatanga kambani yangu yekutanga IC kutsigira boka remwedzi mitatu mushure mokunge ndarwara uye ndakatungamira musangano wangu wekutanga weCI wezvechiremba gore rimwe gare gare. Muna 1994, takaona kudiwa kwekuunza rubatsiro mumisha uye mahofisi eavo vakanga vasingakwanisi kuenda kumisangano yemo, saka kuiswa kwekutanga kwechirwere chechirwere uye mapoka ekutsigira IC paAOL.
Muna 1995, takaenda kune webhu hwepasi rose nekuumba Interstitial Cystitis Network webhusaiti nechinangwa chekupa rubatsiro uye ruzivo kuvarwere, mabhuku ekutsvakurudza yakawanda paIndaneti, uye makiriniki ezvinyorwa zvechiremba (zvose pasina mari kune vatinotora). MuChitungu 1998, ICN yakagadzwa seyekutanga kugadzirisa makambani ekutsvaga kuI IC.
Iye zvino tinoshumira vanenge vanenge 10 000 varwere munyika 16.
Mubvunzo: Chii chinokonzera IC?
A: Pasinei nemakumi emakore ekunyorwa kwebladder syndrome (ikozvino inonzi IC), pamwe nekuwanikwa kuti yakabata vose varume nevana, IC yakanyadzisa kunyoresa chirwere chinonyangadza chevakadzi mugore ra1950 apo vatsvakurudzi vakaratidza kuti mukadzi aive pasi pekuchengetwa kweutano neC IC yakaoma angave "akadzosa kuvenga kune zvizvarwa zvevabereki zvakagadzirwa nemachisti kuburikidza nezviratidzo zvekuvira kubva paucheche." Kunyange nanhasi, vamwe varwere vanosangana navanachiremba vanotenda kuti hakuna kurapwa kune IC kunze kwekutsvaga kuongororwa kwepfungwa.
Zvakanga zvisati zvaitika muna 1987 apo US National Institutes of Health yakagadzirira musangano wavo wekutanga weCI, kusimbisa tsanangudzo yechirwere ichi uye kutanga chirongwa chekutsvakurudza mune ramangwana. Vanotsvakurudza iye zvino vanofunga kuti IC inogona kuva nemitoo yakasiyana-siyana, kusanganisira zvichida kufadza (inogona kukamatira kumasukisi uye isingawanikwi muhutachiwana hwehutachiwana), kuputsika kweGAG kutarisana mumadziro echando, zvinogona kuita mast cell kushandiswa uye neurogenic kuvhiringidzika. Hapana kubvumirana panguva ino pamusana peCI uye vazhinji vanotenda kuti iyo chirwere, zvichida nemhando dzakasiyana-siyana.
Mubvunzo: Ndezvipi zviratidzo zveInstitial Cystitis?
A: IC varwere vanogona kuona humwe hutano hwekuvhenekera (nguva dzinopfuura masere pazuva), kukurumidza kukanganisa, uye / kana kurwadziwa kwekara. Nechinangwa chekuongororwa, chiremba anogonawo kuita hydrodistention kuti aone zviduku zvishoma zvinokonzerwa nehemorrhages inowanikwa mumakumbo emakirini eCI, anonzi glomerulations.
IC varwere vanogonawo kuwana rudiro rwekuzorora kakawanda usiku ( nocturia ), kusagadzikana nepabonde, uye kuoma kugara kana kutyaira motokari. IC varwere vanogonawo kuva nechikwereti chakakosha uye / kana kunzwisiswa kwezvokudya (zvakadai sekranberry juice, acids, doro, chokoti, macrovirusi, nezvimwe).
Iwe unogona kazhinji kuziva murwere we IC nekugara kwavo vachida kushandisa imba yekugara, kunyanya pavanenge vachityaira marefu marefu.
Mubvunzo: Ko IC yakasiyana sei nedzimwe nharo dzemuviri?
A: Ahh ... iyi ndiyo mubvunzo we $ 10,000. Iwe unofanirwa kuyeuka kuti chidimbu chinogona kungotaura mutauro mumwechete, wekutambudzika, kuwanda, kana kukurumidza. Nokudaro pasinei nemamiriro ezvinhu kana kushungurudzika, varwere vese vanogona kuva nezviratidzo zvakafanana.
Prostatitis varwere, somuenzaniso, kazhinji vanonzwa kurwadziwa kunorwadza , nguva zhinji, kuderedza urine kubuda, uye zvichida kusava nemarwadzo uye kurwadziwa kare, panguva, kana mushure mokunge uchisarudzwa .
Urethritis varwere vanogona kuwana nguva yakawanda, kukurumidza, kana kurwadziwa kunyange zvazvo ichiita sekuputika kwechiremba chete. Urethritis inogona kukonzerwa nehutachiona kana kunzwisisika kune sese, spermicides, mabhizimisi ekugeza, kana douches. Varwere vanowanzonyunyutira marwadzo anononoka, dzimwe nguva panguva yekuzorora.
Urethral syndrome ndeimwe nguva inoshushikana yebladder. Vanachiremba havana kubvumirana pamusoro peshoko re urethral syndrome. Chaizvoizvo, rinoratidzika sechishandiswa kune varwere vanogona kunge vane nguva yakawanda kana kuti vanokurumidza, asi vasina chirwere chinowanikwa.
Trigonitis imwe chirwere chinenge chiine zviratidzo zvakafanana neC (kutengesa, kukurumidza, kana / kurwadziwa). Trigonitis inoshandiswa apo vanachiremba vanocherechedza kuti katatu muchechi yacho ine cobblestone-yakaita sechitarisiko. Vamwe vanachiremba vanopikisa trigonitis sechirwere nokuti vanotenda kuti kutarisa kwetatu kunotarisa nenzira iyo.
Vanopedza simba bladder syndrome varwere vangave vane huwandu, hurumende, uye zvikamu zvekudzivirira.
Ichi chirwere chinotendwa kuti chisingaiti chepfungwa chechivharo. Inonzi detrusor hyperreflexia apo chinokonzerwa neurological chikonzero chinozivikanwa, uye kubvisa kusagadzikana apo pasina maitiro eurologic asina kufanira.
Inonzi cystitis, inorwadza bladder syndrome , uye frequency-urgency-dysuria syndrome inoshandiswa zvakasiyana-siyana kurondedzera kukanganisa kwemajini, kukurumidzira, uye / kana manzwiro ekurwadziwa kana kuti kumanikidzwa kunopoteredza bladder, pelvis, uye perineum.
Mune mumiririri ane mwoyo murefu uye chiremba, tinowanzozvidya mwoyo pamusoro pekurapa zviratidzo kupfuura kupesana kana kukakavadzana pamusoro pe "zita" rechirwere. Kana murwere asinganzwisisiki, vanoda rubatsiro pasinei nezita rayo.
Mubvunzo: IC inowanikwa sei?
A: IC varwere vanoongororwa vane kuongorora maitiro avo, zviratidzo zvavo, uye kubviswa kweimwe zvirwere.
Muchiitiko chakanakisisa, varwere vanofungidzirwa kuva neC IC vanozadza diary diary pane imwe nguva iyo ichabvumira murwere uye chiremba kuti aone maitiro ekudzidzira, urin volume, uye marwadzo mazinga. Kana kuongororwa kuchifungidzirwa, chiremba anogona kusarudza kuita mamwe maedzo ekuongorora kuti atonge zvimwe zvirwere. Kana izvi zviedzo zvichibuda zvisina kunaka uye chiremba akanyatsotsinhira kuvapo kweC IC, vanogona kusarudza kuita hydrodistention. Nokudzivisa chidimbu nemvura, vanogona kutarisa masvingo echikanya nokuda kwechimiro chechipiki chinonzi petechial (glomerulations) chinowanikwa mune vakawanda var IC. Mamwe maitiro matsva ekuongorora kuongororwa ari kuongororwa.
Mubvunzo: Ndezvipi zvirongwa zve IC?
A: Mumakore kubva musangano wekutanga weCI muna 1987, masayendisiti akaongorora zvizhinji zvingaita uye, pane dzimwe nguva, kupokana kunokonzera.
Zvinosuruvarisa, hakuna mushonga unenge uchisimbiswa se "mushonga" weCI. Nokudaro, zvinokosha kunzwisisa kuti zvipatara zvakawanda zvakagadzirirwa kuderedza zviratidzo panzvimbo yekurapa zvirwere.
Mishonga yeCI inowanzopinda mumapoka maviri: muromo wemishonga kana mishonga inonzi intravesical iyo inowanikwa zvakananga mucheka. Mishonga yemumuromo inogona kusanganisira bhanhire kupfeka, antidipressants, antihistamines , antispasmodics , uye bladder anesthetics.
Mukuwedzera, kushungurudzika kwesimba, hydrodistention / hydrodilation, nekuvhiya zvinoshandiswa. Kuvhiya, kwakadai sekuwedzera kwechimbiso kana cystectomy, inowanzoonekwa chete pashure pokunge mamwe maitiro ekurapwa ave akaongororwa.
Vanachiremba vakawanda vanoshandisa ruzivo rwavo kune varwere kuti vabatsire kusarudza kuti ndeupi mushonga wokurumbidza. Zvinonyaradza kuziva, zvisinei, kuti kana kusarudzwa kwekutanga kusingabatsiri, pane dzimwe nzira dzakawanda dzekuedza.
Mubvunzo: Zvinogona kudya uye / kana mararamiro ehupenyu zvinoderedza zviratidzo zveCI here?
A: Hongu. Varwere vazhinji vakaziva kuti kudya kunogona kukanganisa IC yavo. Zvokudya zvakanyanyisa, zvinodhakwa, uye / kana marashi ndizvo zvinokonzerwa zvakanaka zve IC.
Mubvunzo: Ndezvipi zvinokonzera ngozi dzekusimudzira IC?
A. Mukutendeseka kose, ini handizivi. Zvakajeka kubva pakutsvakurudza kwepachimiro chevamwe varwere veC IC vane nhoroondo yehutachiona hwechirwere .
Mukuwedzera, varwere vanotaura zvisina kufanira pamusoro pezvinobvira zvido zvemasvikiro. Mumhuri mangu, vose amai vangu, hanzvadzi, tete, cousin, uye mbuya vave nezviratidzo zvakasiyana-siyana, asi kwete IC chaiyo. Mune zvimwe zviitiko, pane imwe nhaurirano yevarwere vari kubuda IC mushure mokuvhiya maitiro kana chipatara chinogara. Asi izvi hazvina kugadziriswa zvakasimba. Tichafanira kumirira kutsvakurudza kwakawanda kuti tiongorore ngozi dzezvinhu.
Mubvunzo: Vachiripi IC vanogona kuenda kupi kuti vatsigire?
A: Zvinhu zveC IC zvino zvakagadzirwa munyika dzakawanda kusanganisira Australia, New Zealand, Canada, USA, England, Netherlands, uye Germany. Masangano edu ekutsigira maIndaneti kuburikidza neI ICN anopa mukana wevarwere vanobva kumativi ose enyika kupa rubatsiro kune mumwe nemumwe. MuU.SA, pane mazvimiririra, zvipatara zvakabatanidzwa uye / kana maCA ekutsigira mapoka. Varwere vane nzira dzakasiyana-siyana dzokutsvaga kubva pane izvo zvinowanikwa munharaunda yavo.
Mubvunzo: Ndezvipi mazano aunayo kune IC varwere?
A: IC chirwere chakaoma kuva nacho nokuti hachioneki kunze. Tinotarisana nedambudziko rakasiyana-siyana rekuita kuti vanachiremba uye nhengo dzemhuri neshamwari tive nechokwadi chokuti isu hatinyatsogutsikana uye tinoda kutarisirwa. Ndinotenda kuti varwere vanoda kuve vatori vezvematongerwo enyika vane hutano mukurapa kwavo.
Hatigoni kutarisira kupinda muhofisi yechiremba kuti tigamuchire kurapwa. Pane mukana wekuti tive nechiremba izvo hazvibvumi kunyange IC sechirwere chechokwadi. Tinofanira kunge takagadzirira kushanda zvakanaka nevanachiremba vedu, kuunganidza ruzivo runogona kubatsira, uye kuva nhengo inoshingaira mukurapa kwedu.
Nzira yakabudirira yeI IC yakanaka kwazvo. Kunyangwe isu tose tinoshuva kuti tinogona kuita chete kurapwa kunoporesa IC yedu, izvi hazvisi chokwadi panguva ino nenguva. Pane kudaro, tinofanira kuedza kuvaka chigadzirwa chemashonga emagadzirirwo anobudirira anoshanda pamwe nekuvandudza hupenyu hwedu neCI yedu.
Chirwere chechirwere chinoshandiswa pakuporesa ndicho chinokosha. Kunyange zvakadaro, isu tinodawo hutano hwakanaka hwekuzvida-mazano nemaitiro uye kudya. Hapasati yambove yakakosha nguva yevashandi ve IC kuti vadzidze kusununguka kwakanaka uye maitiro ekugadzirisa pfungwa.
Uye kana zvasvika pakushushikana kwedu nemanzwiro, kuva neI IC kunogona kukanganisa ukama hwedu nemhuri hupenyu. Ino inguva yakanaka yekuisa pfungwa paunyanzvi hutsva, kusanganisira kushandiswa kwemashure madiki pfupi sekupa mazano.
Mubvunzo: Pane chimwe chinhu chandisina kutaurira chaunofunga kuti chakakosha kuti vakadzi vazive here?
A: Sevatungamiri veboka rekutsigira, chimwe chinhu chandinoona kakawanda ndivakadzi vanonetseka kuti kana vakanonoka uye vachizorora, kuti vari "kupa" kune chirwere chavo.
Kakawanda, vanozvikumbirira kuenda kumhuri uye zviitiko zvehupfumi pasinei nematambudziko akaoma ekutambudzika nokuti vanoda kuve akajairika. Hazvina mubvunzo, kuramba kwavo kunonoka kunogona kutungamirira kumarwadzo anorwadza akaoma zvikuru kubata.
Ndinotenda zvakasimba kuti tinofanira kunge tine ruremekedzo rwakanaka pamiganhu yedu. Dai takanga takaita pangozi yemotokari uye tainge tavhuna gumbo redu, raizove rakakandwa uye hatizove tichimhanya. Asi neCI, hatigoni kuisa chiganda uye kuti, nokuti varwere vanogona kutama nyore, vanokanganwa kuti ivo, chaizvoizvo, vakakuvadzwa. Kuremekedza kwakanaka kwomuviri wedu kudikanwa kwekuzorora, pamwe nekucherechedza kwokutanga marwadzo kuitira kuti tisazviitire zvakanyanya, zvinokosha kuti tibate kwenguva refu.
Pakupedzisira, vakadzi vakawanda vanofunga kuti kana vakamira vachizorora, havasi vanaamai vakanaka kana madzimai. Inogona kuva utsinye hwekuora mwoyo uye kuora mwoyo kwavanoita kuti vatende kuti havakodzeri kutsigirwa kubva kumhuri yavo. Ivo uye isu tinofanira kuyeuka kuti isu tose tinorwara. Sevanaamai kana madzimai, tinoda kutora avo vatinoda. Asi kana isu pachedu tiri kurwara, isu kazhinji hatitsvaki rubatsiro ratinoda. Chirwere chisingaperi hachichinje rudo rwedu rwedu mumoyo medu kumhuri dzedu. Zvimwe ino ndiyo nguva yako yekurega mhuri yako ikuchengetedze iwe.