Q + A ndi Jill Osborne, Woyambitsa & CEO wa Interstitial Cystitis Network
Zotsatirazi zikuchokera ku zokambirana ndi Jill Osborne, Woyambitsa & CEO wa Interstitial Cystitis Network:
Q: Chonde ndiuzeni za mbiri yanu ndi chidwi chanu mu Interstitial Cystitis (IC).
A: Ndine odwala kwambiri a IC. Ndinali ndi zaka 32 pamene zizindikiro zanga zinayamba. Kangapo pamwezi, ndinamva kupweteka kwambiri kwa chikhodzodzo, kukhumudwa, ndi kufunika kokodza nthawi zambiri , makamaka usiku.
Ngakhale kuti zinkakhala ngati matenda , mabakiteriya sanapezekedwe mkodzo wanga.
Zinatenga chaka kuti ndizindikire IC. Pofika m'chilimwe cha 1993, sindinkatha kuyenda mozungulira phokoso popanda kulira. Kuyendetsa galimoto kunali kovuta kwambiri, ntchito inali yovuta, ndipo ine (monga momwe odwala ena a IC anachitira) anavutika kwambiri. Ngakhale kuti ndinali ndi urologist wabwino kwambiri, ndimamva kuti ndine ndekha komanso ndekha. Kenaka, tsiku lina, ndinayankhula ndi wodwala wina wa MC pomponi. Kwa nthawi yoyamba, ndinamva kuti wina amamvetsa bwino vuto langa. Ndaphunzira njira zingapo zothandizira komanso njira zochiritsira zomwe zinandipatsa chithandizo chambiri. Koposa zonse, ndinapatsidwa mphatso ya chiyembekezo.
Ndinayamba gulu langa loyamba lachirikizo la IC patangopita miyezi itatu nditadwala ndikuyang'anira msonkhano wanga woyamba wachipatala wa IC chaka chimodzi. Mu 1994, tinadziŵa kufunikira kobweretsa chithandizo mwathumo m'nyumba ndi maofesi a anthu omwe sankakhoza kupita kumisonkhano yowonongeka, motero kukhazikitsidwa kwa matenda oyambirira a chikhodzodzo ndi magulu othandizira a IC pa AOL.
Mu 1995, ife tinayambira pa webusaiti yonse ya padziko lapansi pakupanga webusaiti ya Interstitial Cystitis Network ndi cholinga chothandizira odwala, chidziwitso chaibulale yowonjezera pa intaneti, ndi zipangizo zamankhwala kwa madokotala (popanda ndalama kwa ochita nawo). Mu Spring 1998, ICN inakhazikitsidwa ngati kampani yoyamba yosindikizira odwala ku IC.
Tsopano tikutumikira odwala pafupifupi 10,000 m'mayiko 16.
Q: Nchiyani chimayambitsa IC?
A: Ngakhale kuti zaka zambiri zalembedwa za matenda a chikhodzodzo (omwe panopa amatchedwa IC), komanso kuti anapeza kuti izo zakhudza amuna ndi ana onse, IC inadandaula kuti anadwala matenda oopsa a amayi m'ma 1950 pamene ochita kafukufuku ananena kuti mkazi atapatsidwa thandizo lachipatala ndi IC yaikulu ayenera kuti "anadana nkhanza kwa mawerengedwe a makolo anagwira masochistically kudzera zizindikiro za chikhodzodzo kuyambira ali wakhanda." Ngakhale lero, odwala ena amakumana ndi madokotala omwe amakhulupirira kuti palibe chithandizo kwa IC koma osati kutumizira kuunika kwa maganizo.
Kuyambira mu 1987, bungwe la US National Institute of Health linasonkhanitsa msonkhano wawo woyamba ku IC, kukhazikitsa tanthauzo la matendawa ndikuyambitsa maphunziro a kafukufuku wamtsogolo. Ofufuza tsopano akukhulupirira kuti IC ingakhale ndi chiyambi, kuphatikizapo zovuta (kumamatira kumatenda komanso osapezeka mumtambo wabwino), kugwidwa kwa GAG wosanjikiza mu khoma la chikhodzodzo, kugwiritsidwa ntchito kwa maselo a mitsempha ndi kutupa kwaukali. Palibe mgwirizano pa nthawiyi chifukwa cha IC ndipo ambiri amakhulupirira kuti ndi matenda, mwina ndi maonekedwe osiyanasiyana.
Q: Kodi zizindikiro za Interstitial Cystitis ndi ziti?
A: Odwala a IC angathe kuthandizidwa pafupipafupi (kasanu ndi kamodzi patsiku), kupweteka kwachitsulo, ndi / kapena chikhodzodzo. Pofuna kupeza matenda, dokotala akhoza kupanga hydrodistention kuti apeze tizilombo toyambitsa matenda omwe amapezeka m'mitsempha ya odwala IC, otchedwa glomerulations.
Odwala a IC angathe kuthandizanso kukodza usiku uliwonse ( nocturia ), osagonana, komanso kuvutika kukhala kapena kuyendetsa galimoto. Odwala a IC angakhalenso ndi chikhodzodzo chochepa komanso / kapena kukhudzidwa kwa zakudya (monga madzi a jranberry, acids, mowa, chokoleti, citrus, ndi zina zambiri).
Nthawi zambiri mumatha kuzindikira wodwalayo wa IC chifukwa nthawi zambiri amayenera kugwiritsa ntchito chimbudzi, makamaka pamene akuyendetsa mtunda wautali.
Q: Kodi IC ikusiyana bwanji ndi matenda ena a chikhodzodzo?
A: Ahhh ... ili ndi funso la $ 10,000. Muyenera kukumbukira kuti chikhodzodzo chimangolankhula chinenero chimodzi, chomwe chimapweteka, nthawi zambiri, kapena modzipereka. Choncho ngakhale kuti ali ndi vuto kapena zoopsa, odwala chikhodzodzo akhoza kukhala ndi zizindikiro zofanana.
Mwachitsanzo, odwala a proststatitis amamva kupweteka kwapweteka , nthawi zambiri, kuchepa kwa mkodzo, komanso mwina kuperewera ndi kupweteka, kusanayambe, kapena kutha.
Odwala matenda a urethritis amatha kupezeka pafupipafupi, mofulumira, kapena kupweteka ngakhale kuti akuwoneka ngati kutupa kwa chiberekero. Urethritis ukhoza kuyamba chifukwa cha matenda kapena zokhudzana ndi sopo, spermicides, mankhwala osambira, kapena douches. Odwala nthawi zambiri amadandaula chifukwa cha ululu wozembera, nthawi zina akamakodza.
Urethral syndrome ndi nthawi ina yosautsa ya chikhodzodzo. Madokotala sanatsutse za tanthauzo la matenda a urethral. Kwenikweni, zikuwoneka kuti amagwiritsidwa ntchito kwa odwala amene angakhale ndifupipafupi kapena ofulumira, koma popanda matenda omwe amapezeka.
Trigonitis ndi matenda ena omwe ali ndi zizindikiro zofanana ndi IC (kuthamanga, kufulumira, kapena / kupweteka). Trigonitis imagwiritsidwa ntchito pamene madokotala akuwona kuti katatu mu chikhodzodzo ali ndi mawonekedwe ofanana ndi maonekedwe a koblestone. Madokotala ena amatsutsana ndi trigonitis monga matenda chifukwa amakhulupirira kuti katatu mwachibadwa amawoneka motero.
Odwala kwambiri a chikhodzodzo amatha kukhala ndifupipafupi, mofulumira, komanso masewera olimbitsa thupi.
Matendawa amakhulupirira kuti sagwiritsidwe ntchito kansalu. Amatchedwa detrusor hyperreflexia pamene matenda amadzidzidzi amadziŵika, ndi kusokonezeka kwadzidzidzi pamene palibe vuto la matenda a ubongo.
Matenda a cystitis, matenda opweteka kwambiri a chikhodzodzo , komanso matenda afupipafupi-omwe amachititsa kuti asamangidwe, amatha kusinthana, komanso / kapena kupweteka kapena kuthamanga kuzungulira chikhodzodzo, pelvic, ndi perineum.
Pakati pa odwala ndi odwala, nthawi zambiri timadandaula zambiri za kuchiza zizindikiro kusiyana ndi kupweteka kapena kukangana pa "dzina" la matendawa. Ngati wodwalayo sakuvutika, amafunikira thandizo mosasamala dzina lake.
Q: Kodi IC imapezeka bwanji?
A: Odwala IC amapezeka ndi kufufuza machitidwe awo, zizindikiro zawo, ndi kuthetsa matenda ena.
Pazochitika zabwino kwambiri, odwala amene akuganiza kuti ali ndi IC amatha kulembetsa kalata yotsatila nthawi yomwe ingathandize wodwala ndi dokotala kuti aziwona mavoti, mavoti a mkodzo, ndi maulendo opweteka. Ngati matenda akudziwika, dokotala angasankhe kuchita zoyezetsa zina kuti athetse matenda ena. Ngati mayesowa atuluka bwino ndipo dokotala akukayikira kwambiri kukhalapo kwa IC, angasankhe kupanga hydrodistention. Polepheretsa chikhodzodzo ndi madzi, amatha kuyang'ana makoma a chikhodzodzo chifukwa cha kuchepa kwa petechial (glomerulations) yomwe imapezeka m'magulu ambiri a IC. Njira zatsopano zowonetsera matenda akufufuza tsopano.
Q: Kodi mankhwala a IC ndi chiyani?
A: Kuyambira pa msonkhano woyamba ku IC mu 1987, asayansi asanthula zambiri zomwe angathe kuchita, ndipo nthawi zina amadzitsutsana.
Mwatsoka, palibe mankhwala omwe angakhazikitsidwe ngati "mankhwala" kwa IC. Choncho, nkofunika kumvetsetsa kuti mankhwala ambiri apangidwa kuti athetse zizindikiro kusiyana ndi kuchiza matenda.
Mankhwala a IC amapezeka m'magulu awiri: mankhwala osokoneza bongo kapena mankhwala opatsirana omwe amaperekedwa mwachindunji mu chikhodzodzo. Mankhwala ochiritsira amatha kupaka zovala zowononga, zowonongeka, antihistamines , antispasmodics , ndi anesthetics ya chikhodzodzo.
Kuphatikiza apo, kugwedeza mitsempha, hydrodistention / hydrodilation, ndi opaleshoni amagwiritsidwa ntchito. Opaleshoni, monga kuwonjezeka kwa chikhodzodzo kapena cystectomy, kawirikawiri amaganiziridwa pokhapokha ngati njira zina zothandizira zowonongeka zakhala zikufufuzidwa.
Madokotala ambiri amagwiritsa ntchito zochitika zawo ndi odwala kuti athandize kusankha chithandizo chomwe angapereke. Zimalimbikitsa kudziwa, komabe, ngati kusankha koyamba sikuthandiza, pali njira zina zambiri zoyesera.
Q: Kodi kusintha kwa zakudya ndi / kapena kusintha kwa moyo kungachepetse zizindikiro za IC?
A: Inde. Odwala ambiri aphunzira kuti zakudya zingakhudze ma IC. Zakudya zomwe zimakhala zovuta kwambiri, zakumwa zauchidakwa, ndi / kapena zamchere zimayambitsa kwambiri IC.
Q: Kodi ndizifukwa ziti zomwe zingayambitse IC?
A. Muwona mtima wonse, sindikudziwa. Zikuwoneka bwino kuchokera ku kafukufuku wamagazi omwe odwala ena a IC ali nawo mbiri ya matenda a chikhodzodzo cha ana .
Kuonjezerapo, odwala amalankhula momveka bwino za machitidwe omwe angakhalepo. M'banja mwathu, amayi anga, alongo, azakhali, msuweni, ndi agogo aakazi akhala ndi zizindikiro zosiyana siyana, koma osati IC. Nthaŵi zina, pakhala kukambirana kwa odwala omwe akupanga IC pambuyo pochita opaleshoni kapena kuchipatala. Komabe izi sizinatsimikizidwe mwamphamvu. Tiyenera kuyembekezera kufufuza kwina kuti titsimikizire zifukwa zoopsa.
Q: Odwala a IC angapeze kuti thandizo?
A: Ntchito za IC tsopano zakhazikitsidwa m'mayiko ambiri kuphatikizapo Australia, New Zealand, Canada, USA, England, Netherlands, ndi Germany. Magulu athu othandizira pa intaneti kudzera ku ICN amapereka mwayi kwa odwala ochokera kuzungulira dziko lapansi kuti athandizane wina ndi mzake. Ku USA, pali magulu ovomerezeka, ogwira ntchito kuchipatala komanso / kapena ICA. Odwala ali ndi njira zambiri zoti afufuze pogwiritsa ntchito zomwe zikupezeka m'dera lawo.
Q: Ndi malangizo ati omwe muli nawo kwa odwala IC?
A: IC ndi matenda ovuta kukhala nawo chifukwa sakuwonekera kunja. Timakumana ndi vuto lapadera loti tigwirizane ndi madokotala ndi abwenzi athu ndi abwenzi kuti tili osasangalatsa komanso tikusowa chisamaliro. Ndimakhulupirira kuti odwala ayenera kukhala otsogolera pazochipatala.
Sitingathe kuyembekezera kuti tilowe mu ofesi ya dokotala kuti tilandire machiritso. Pali mwayi woti tikhoza kukhala ndi dokotala yemwe savomereza ngakhale IC ngati matenda enieni. Tiyenera kukhala okonzeka kugwira bwino ntchito ndi madokotala athu, kusonkhanitsa mfundo zomwe zingakhale zothandiza, komanso kukhala okhudzidwa ndi chisamaliro chathu.
Kuyenda bwino kwa IC kuli bwino. Ngakhale kuti tonse tikukhumba kuti titha kuchiritsa chimodzi chokha kuti tichiritse IC, izi siziri zenizeni panthawi ino. M'malo mwake, tiyenera kuyesa kupanga chida cha njira zogwirira ntchito zomwe zimagwirira ntchito pamodzi kuti zithetse miyoyo yathu komanso IC.
Zilonda za chikhodzodzo zokhudzana ndi machiritso ndizofunikira. Komabe, tikufunikiranso njira zabwino zothandizira komanso zakudya. Sipanakhalepo nthawi yofunika kwambiri kwa wodwalayo wa IC kuti aphunzire kumasuka bwino ndi njira zowonongeka.
Ndipo pankhani ya kukhala ndi mtima wabwino, kukhala ndi IC kungakhudze maubwenzi athu ndi mabanja athu. Ino ndi nthawi yabwino kuganizira maluso atsopano, kuphatikizapo kugwiritsa ntchito njira zamakono monga uphungu.
Q: Kodi pali chilichonse chimene sindinayankhe chimene mukuganiza kuti ndi chofunikira kuti amayi adziwe?
A: Monga mtsogoleri wa gulu lothandizira, chinthu chimodzi chimene ndimawona mobwerezabwereza ndi amayi omwe amadandaula kuti ngati amachepetsanso kupuma, "akupereka" matenda awo.
Kaŵirikaŵiri, amadzikakamiza kuti azipita kumabanja awo komanso ammudzi ngakhale kuti akuvutika kwambiri chifukwa akufuna kukhala achibadwa. Mosakayikira, kukana kwawo kuchepetsa kungapangitse ululu wowawa kwambiri umene ndi wovuta kwambiri kuchiritsa.
Ndikukhulupirira kwambiri kuti tiyenera kukhala ndi ulemelero wathanzi kwa malire athu. Tikadakhala m'galimoto ya galimoto ndipo tidathyola mwendo wathu, zikanakhala mu kuponyera ndipo sitidzatha kuthamanga. Komabe ndi IC, sitingathe kuimitsa chikhodzodzo ndipo, chifukwa odwala akhoza kusuntha mosavuta, amaiwala kuti, makamaka, akuvulazidwa. Kukhala ndi ulemu wathanzi kufunikira kwa thupi lathu kuti tipumule, komanso kuvomereza koyambirira kwa ululu kuti tisadzipangitse tokha, ndikofunika kuti tithe kupirira nthawi yayitali.
Pomalizira, amayi ambiri amaganiza kuti ngati aima ndi kupuma, iwo sakhala amayi abwino kapena akazi. Zitha kukhala nkhanza za kukhumudwa ndi kukhumudwa kumene amakhulupirira kuti sangayenere kuthandizidwa ndi banja lawo. Iwo ndipo tiyenera kukumbukira kuti tonse timadwala. Monga amayi kapena akazi, timakonda anthu omwe timawakonda. Komabe pamene ife timadwala, sitimapempha thandizo lomwe tikusowa. Matenda osasintha samasintha chikondi chomwe tili nacho m'mitima yathu kwa mabanja athu. Mwina ino ndi nthawi yanu kuti banja lanu likusamalirani.