Mutengo weKurarama neUlcerative Colitis: Nyaya yaJackie

Zvemukati

• Kuwana kuongororwa
• ‘Zvinotyisa’ zvinodhura zvekutarisira
• Kumhanya pasi pane sarudzo
• Kuvhiya mina, zviuru zvemadhora
• Kukumbira rubatsiro
• Kushungurudzika kwekugara inshuwarisi
• Kufungidzira kudzokazve kunotevera

Jackie Zimmerman anogara muLivonia, Michigan. Zvinotora maawa akati wandei kutyaira kubva kumba kwake kuenda kuCleveland, Ohio - rwendo rwaakaita kasingaverengeki kwekugadzwa kwechiremba nekuvhiya.

"[Iyo] ingangove inguva inosvika madhora mazana maviri pese pandinoenda ikoko, pakati pechikafu, negasi, nenguva, uye nezvinhu zvese," akadaro.

Nzendo idzodzo dzinongovawo chikamu chemubhadharo uyo Jackie aifanira kubhadhara kuti agadzirise ulcerative colitis (UC), chirwere chisingaperi chaanga achigara nacho kwemakore.

UC rudzi rwechirwere chinoputira ura (IBD) chinokonzera kuzvimba uye maronda kukura padumbu remukati memukati ura (colon). Inogona kukonzera kuneta, kurwadziwa mudumbu, kubuda kweruoko, uye zvimwe zviratidzo. Inogona zvakare kutungamira kumatambudziko akasiyana siyana, mamwe acho ari kutyisidzira hupenyu.

Kurapa mamiriro, Jackie nemhuri yake vakabhadhara zviuru zvemadhora mumabhizimusi einishuwarenzi, macopay, uye madhiri. Vakabhadharawo mari kubva muhomwe yekufamba, mishonga yemutengesi (OTC), uye zvimwe zvinodhura zvekutarisira.

"Kana tiri kutaura izvo zvakabhadharwa neinishuwarenzi, isu tangofanana nemamiriyoni emadhora," akadaro Jackie.

“Zvichida ndiri mubanga remadhora zviuru zana. Zvichida zvakanyanya nekuti handisi kufunga nezvese zvinobviswa pakushanya kwese. "

Kuwana kuongororwa

Jackie akaonekwa aine UC mushure mekugara nemudumbu (GI) zviratidzo kweanenge makore gumi.

"Ndakanga ndichitambura nemaronda ekudzivirira maronda kwemakore gumi ndisati ndaona chiremba nezvazvo," akadaro, "asi panguva iyoyo, ndakanga ndiri kuchikoro chesekondari, uye zvainyadzisa."

Muchirimo 2009, akaona ropa muchigaro chake uye akaziva kuti yaive nguva yekuona chiremba.

Akaenda kune imwe nyanzvi yeGI. Akayambira Jackie kuti achinje dhayeti yake uye akamurayira mamwe mawedzera ekudya.

Kana nzira iyoyo ikasashanda, akaitisa sigmoidoscopy inochinja - mhando yemaitiro anoshandiswa kuongorora rectum uye yakadzika colon. Akaona zviratidzo zvekutaura kweUC.

"Panguva iyoyo, ndakanga ndazara nemoto," Jackie akayeuka.

“Zvairwadza zvisingaite. Icho chaive chiitiko chaicho, chaicho chinotyisa. Uye ndinorangarira, ndanga ndakagadzika patafura, nzvimbo yacho yapera, uye akandibata pabendekete rangu, ndokuti, 'Usanetseke, chingori chironda cheronda.' ”

Asi zvaityisa sechiitiko ichocho, hapana chaigona kugadzirira Jackie kumatambudziko aachatarisana nawo mumakore anotevera.

‘Zvinotyisa’ zvinodhura zvekutarisira

Panguva yaakabatwa chirwere, Jackie aive nebasa renguva yakazara. Haana kufanira kupotsa basa rakawanda pakutanga. Asi pasina nguva refu, zviratidzo zvake zvakawedzera, uye aifanira kutora nguva yakawanda kuti agadzirise UC wake.

“Sezvo zvinhu zvakawedzera, uye zvakakurumidza, ndakanga ndiri muchipatara zvakanyanya. Ndakanga ndiri muEER pamwe vhiki imwe neimwe kwemwedzi. Ndanga ndichigara kwenguva yakareba muchipatara, "akaenderera mberi," ndanga ndichishaya basa rakawanda, uye vanga vasingandibhadhare panguva iyoyo yekuzorora. "

Nguva pfupi mushure mekuongororwa kwake, chiremba weGI waJackie akamunyorera mesalamine (Asacol), chinwiwa chemumuromo chekubatsira kudzikisa kuzvimba mukoloni yake.

Asi mushure mekutanga mushonga, akagadzira kuwanda kwemvura yakatenderedza moyo wake - zvisingawanzoitika mhedzisiro yemesalamine. Aifanira kurega kushandisa mushonga, kuvhiyiwa moyo, uye kupedza vhiki iri munzvimbo yevanorwarisa (ICU).

Iyo yaive yekutanga yeakawanda anodhura maitiro, uye akawedzerwa kugara muchipatara iye aizove nekuda kwehutano hwake.

"Panguva iyoyo, mabhiri anga achingo kungopinda mukati. Ndaiavhura ndobva ndangoti, 'Ah, iyi yakareba uye inotyisa,' wozoita senge, 'Chii chiri chidiki, chii changu chisina kushomeka, muripo? '”

Jackie akanyoresa muhurongwa hweinishuwarenzi yehutano hwaizobatsira kubhadhara mitengo yekutarisirwa kwake. Kana zvikave zvakanyanyisa kuoma kutenga mari yake yemwedzi yemadhora mazana matanhatu, vabereki vake vaipindira kuti vabatsire.

Kumhanya pasi pane sarudzo

Jackie zvakare ane multiple sclerosis (MS), chirwere chemuviri chinogumira mimwe yemishonga yaanogona kutora.

Nekuda kwezvirambidzo izvi, chiremba wake aisakwanisa kumupa biologic zvinodhaka zvakadai se infliximab (Remicade), iyo inowanzoshandiswa kurapa UC kana mesalamine iri patafura.

Akapihwa budesonide (Uceris, Entocort EC) uye methotrexate (Trexall, Rasuvo). Hapana imwe yemishonga iyi yakashanda. Zvaiita sekunge kuvhiya kungave kwake kwakanyanya kuita.

"Panguva iyoyo, ini ndaive ndichiramba ndichiderera maererano nehutano," akawedzera, "uye pasina chandaishanda nekukurumidza, ndaive ndatanga kutaura nezvekuona chiremba anovhiya."

Ndipo pakatanga nzendo dzaJackie kuCleveland Clinic muOhio. Aizofanira kuyambuka miganhu yenyika kuti awane rubatsiro rwaaida.

Kuvhiya mina, zviuru zvemadhora

PaCleveland Clinic, Jackie aizoitwa oparesheni kuti abvise colon yake pamwe neremarara uye agadzire dziva rinozivikanwa se "J-homwe." Izvi zvaizomutendera kuti achengetedze chituru uye achichipfuudza zvisina basa.

Maitiro acho aizove nemabasa matatu akapararira pamusoro pemwedzi mipfumbamwe. Asi nekuda kwekukanganisika kusingatarisirwi, zvakatora oparesheni ina uye rinopfuura gore kupedzisa. Akave nekuvhiya kwake kwekutanga munaKurume 2010 uye kekupedzisira munaJune 2011.

Mazuva akati wandei vasati vavhiyiwa, Jackie akagamuchirwa muchipatara kunoongororwa pre-operative. Akagarawo kwemazuva mashoma mushure meimwe nzira yekutevera-kuongorora uye kuchengetedza.

Panguva yekugara muchipatara, vabereki vake vakatarisa muhotera iri padyo kuti vagomubatsira kuita izvi. "Tiri kutaura zviuru zvemadhora muhomwe, kungova ipapo," akadaro Jackie.

Kuvhiya kwega kwega kwaiita madhora zviuru makumi mashanu kana kudarika, yakawanda yacho yaibhadhariswa kukambani yeinishuwarenzi.

Yake inishuwarenzi mupi aive amugadza gore rinobvisirwa madhora zviuru zvinomwe, asi muhafu yepiri ya2010, kambani iyoyo yakabuda mubhizinesi. Aifanira kutsvaga akasiyana mupi uye awane chirongwa chitsva.

“Gore rimwe chete, ndakabhadhara madhora zviuru gumi nezviuru kubva muhomwe nekuti kambani yangu yeinishuwarenzi yakandidonhedza uye ndaifanira kuwana imwe nyowani. "Ini ndanga ndatobhadhara yangu yakabviswa uye yekubuda muhomwe, saka ndaifanira kutangazve pakati pegore."

Kukumbira rubatsiro

MunaJune 2010, Jackie akarasikirwa nebasa.

Akange arasikirwa nebasa rakawandisa, nekuda kwekurwara uye nguva dzekurapwa.

"Vaindidaidza mushure mekuvhiyiwa ndokuti," Hei, unodzoka riini? ’Uye hapana nzira yekutsanangurira vanhu zvausingazive,” akadaro.

“Ndakanga ndisipo zvakakwana. Vakanga vaine nyasha nezvazvo, asi vakandidzinga, ”akadaro Healthline.

Jackie akagamuchira madhora mazana matatu pasvondo mukushaikwa kwemabasa, yaive mari yakawandisa kwaari kuti akwanise kubatsirwa nenyika - asi isina kukwana kubhadhara mari yekurarama uye mari yekurapwa.

"Hafu yemari yandaitambira pamwedzi ingadai iri mari yangu yeinishuwarenzi panguva iyoyo," akadaro.

"Chokwadi ndanga ndichikumbira rubatsiro kubva kumhuri yangu, uye ndakafara kuti vaigona kundipa, asi kwaive kunzwa kwakaipisisa kuva munhu mukuru uye ndichifanira kukumbira vabereki vako kuti vakubatsire kubhadhara zvikwereti zvako."

Mushure mekuvhiyiwa kwake kwechina, Jackie aigara achigadzwa kuCleveland Clinic kuti aone kupora kwake. Paakave nekuputika kweJ-pouch yake, chinetso chakajairika chekuvhiyiwa kwaaive nako, aifanira kuita dzimwe nzendo kuCleveland kune imwezve yekutevera.

Kushungurudzika kwekugara inshuwarisi

Kuvhiya kwakaita mutsauko mukuru muhupenyu hwaJackie. Nekufamba kwenguva, akatanga kunzwa zvirinani uye akazopedzisira adzoka kubasa.

Muchirimo 2013, akawana basa pane imwe ye "Big Three" vagadziri vemotokari muMichigan. Izvi zvakamutendera kudzika inishuwarenzi inodhura chirongwa chaakatenga uye kunyoresa muchirongwa-chinotsigirwa chirongwa panzvimbo.

"Ini ndakatora inishuwarenzi yavo, inishuwarenzi yemushandirwi wangu, kekutanga nekuti ndainzwa senge ndakagadzikana zvakakwana kubata basa uye kuti ndaivimba kuti ndichaveko kwekanguva," akayeuka.

Mukuru wake ainzwisisa zvaaida pahutano uye akamukurudzira kuti atore nguva yaanoda. Akagara pabasa iroro kweanenge makore maviri.

Paakasiya basa iri, akatenga inishuwarenzi kuburikidza neinishuwarenzi yenyika iyo yaive yakagadzwa pasi peAnotengeka Care Act ("Obamacare").

Muna 2015, akatanga rimwe basa kusangano risingabatsiri. Akachinja chirongwa chake cheAACA cheimwe chirongwa chinotsigirwa nevashandirwi. Izvo zvakashanda mushe kwenguva diki, asi iye aiziva kuti yakanga isiri mhinduro yenguva refu.

"Ndainzwa kunge ndakagara pabasa ipapo kwenguva yakareba kupfuura zvandaida kune zvinhu zvakaita seinishuwarenzi," akadaro.

Aive aine MS achidzokazve pakutanga kwegore iro uye aizoda inishuwarenzi kuvhara mitengo yekugadzirisa ese ari maviri mamiriro.

Asi mune ino mamiriro ezvematongerwo enyika, iyo ACA yakanzwa yakanyanya kusagadzikana kuti Jackie atenge imwe hurongwa hweinishuwarenzi kuburikidza nekuchinjana kwenyika. Izvo zvakasiya iye achitsamira pane wake waanoshandira-anotsigirwa chirongwa.

Aifanira kuramba achishanda basa raimukonzera kushushikana kwakawanda - chimwe chinhu chingaite kuti zviratidzo zveMS neUC zviwedzere.

Kufungidzira kudzokazve kunotevera

Jackie nemukomana wake vakaroora mukudonha kwa2018. Semurume wake, Jackie aigona kunyoresa muchirongwa cheinishuwarenzi chaakashandira.

"Ndine rombo rakanaka kuti ndakakwanisa kuwana inishuwarenzi yemurume wangu, kuti takasarudza kuroora panguva chaiyo," akadaro.

Urongwa uhwu hunomupa kufukidza kwaanoda kubata mazhinji ehutano husingaperi mamiriro apo achishanda seanozvishandira wega wedhijitari wekushambadzira, munyori, uye mumiririri wevarwere.

Kunyangwe zviratidzo zvake zveGI zviri pasi pesimba, iye anoziva izvo zvinogona kuchinja chero nguva. Vanhu vane UC vanogona kuwana nguva refu yekuregererwa iyo inogona kuteverwa ne "flares" yezviratidzo. Jackie anoita poindi yekuchengetedza imwe yemari yaanowana, mukufungidzira kungangodzokazve.

"Unogara uchida kuva ne stash yemari yekuti kana uchinge warwara, nekuti zvekare, kunyangwe inishuwarenzi yako ichivhara zvese uye zvinoshamisa, pamwe hausi kushanda. Saka hapana mari iri kuuya, uchiri nemabhiri enguva dzose, uye hapana rubatsiro rwevarwere rwekuti 'Ndiri kuda zvekutengesa mwedzi uno.' ”

"Mari iri kunze haina magumo, uye mari inomira nekukurumidza chaizvo kana iwe usingakwanise kuenda kubasa," akawedzera, "saka inzvimbo inodhura chaizvo kuva."