Mutengo Wekurarama neUlcerative Colitis: Meg's Nyaya

Zvemukati

• Kuwana kuongororwa uye kurapwa
• Kuenderera mberi bvunzo uye kurapwa
• Kuwana raramo

Zvinonzwisisika kunzwa usina kugadzirira mushure mekuonekwa uine chirwere chisingaperi. Pakarepo, hupenyu hwako hunomiswa uye zvaunokoshesa zvinochinja. Hutano hwako uye kugara zvakanaka ndiko kwaunonyanya kukoshesa uye simba rako rakazvipira kutsvaga kurapwa.

Rwendo rwekupora harumbofi rwakareruka, uye zvingangodaro kuti uchasangana nezvipingamupinyi zvishoma munzira. Chimwe chezvipingamupinyi, chokwadika, ndeye nzira yekubhadhara iyo mutengo wekutarisira chirwere chisingaperi.

Zvichienderana nemamiriro ako ezvinhu, unogona kuve neinishuwarenzi yehutano uye mari inokwana kubhadhara kurapwa kwako pasina kunyanya kunetseka.

Kana, zvinogona kuti iwe uri pakati pemakore makumi maviri, usina inishuwarenzi, kuchikoro, uye uchishanda basa renguva isina kuzara kwe $ 15 paawa. Izvi ndizvo zvakaitika kuna Meg Wells.

Yakanga iri 2013 uye Meg anga achangotanga chirongwa che master paSonoma State University. Akanga achidzidza tsika tsika manejimendi, achitarisira kuti rimwe zuva achashanda kunhoroondo mamuseum seacurator.

Meg anga ane makumi maviri nematanhatu, achigara ega, uye achishanda basa renguva isina kuzara. Aive nemari yaingokwana kubhadhara rendi yake nemari yechikoro dzakasiyana siyana. Asi nyika yake yakanga yave kuda kuchinja zvinoshamisa.

Kwenguva yakati, Meg anga ave achisangana nezvinhu zvakaita sekuzvidya moyo kwakashata, gasi, uye kuneta. Akanga akabatikana nebasa uye akapedza zvidzidzo, saka akasendeka kuenda kuna chiremba.

Pakazosvika Mbudzi ya2013, zvisinei, zviratidzo zvake zvakave zvinotyisa kusateedzera.

"Ndanga ndichienda kuchimbuzi zvakanyanya," akadaro, "uye ndipo pandakatanga kuona ropa, uye ndanga ndati," Zvakanaka, chimwe chinhu chiri, chakashata chaizvo. "

Ulcerative colitis (UC) rudzi rwechirwere chinoputira ura (IBD) chinokonzera kuzvimba uye maronda kukura mumatumbu makuru. Muzviitiko zvakawanda, chirwere chinokura zvishoma nezvishoma uye chinowedzera kuwedzera nekufamba kwenguva.

Chikonzero chaicho chemamiriro acho hachizivikanwe, asi vaongorori vanotenda kuti genetics, zvakatipoteredza, uye immune system yakanyanyisa inogona kutora chinzvimbo.

Ropa muzvigaro chiratidzo chakajairika cheUC. Meg paakaona ropa, akaziva kuti yaive nguva yekuwana rubatsiro.

Meg yakanga isina inishuwarenzi yehutano panguva iyoyo. Aifanira kubhadhara mazana emadhora muhomwe kuitira kushanya kwese kwachiremba, kuongororwa ropa, uye kuongororwa kwezvituru zvaitora kuti abvise zvikonzero zvakajairika zvezviratidzo zvake.

Mushure mekushanyirwa kwakawanda, timu yake yehutano yakakwanisa kudzikisira pasi chikonzero chechiratidzo chake kuUC, chirwere cheCrohn, kana gomarara rekoloni.

Mumwe wavanachiremba vake akataura kuti zvingave zvakanaka kumirira kusvikira ave neinishuwarenzi yehutano asati atora nhanho inotevera - colonoscopy. Maitiro aya anogona kusvika pamadhora mazana mana pasina inishuwarenzi yekuvhara.

Mune imwe nguva yekupererwa, iye akatenga hurongwa hweinishuwarenzi yehutano kubva kune broker. Asi paakadzidza kuti hazvingafukidze chero hupi hupi hutano hwehutano mudunhu rake, aifanira kukanzura hurongwa.

"Mushure meizvozvo, vabereki vangu vakatora nzvimbo nekuti ini ndaingorwara zvekutadza kubata nazvo," akadaro Meg. "Panguva iyoyo, ini ndaingobuda ropa uye ndichirwadziwa zvakanyanya."

Kuwana kuongororwa uye kurapwa

Mukutanga kwegore ra2014, Meg akanyoresa muSirivheri 70 HMO chirongwa cheinishuwarenzi chehutano kuburikidza naKaiser Permanente nerubatsiro rwemhuri yake. Kuchengetedza kufukidzwa, iye anobhadhara maprimiyamu e $ 360 pamwedzi. Iyi mwero ichawedzera kusvika kumadhora mazana mana nemakumi mashanu pamwedzi muna2019.

Iye zvakare ane chekuita nekopay kana mari yemubhadharo yemari pamazhinji emishonga yake, kushanya kwachiremba, kurapwa kwevarwere, kurapwa kwevanorwara, uye kuongororwa kwelebhu. Zvimwe chete zvezvikwereti izvi zvinoverengeka zvakamubvisira gore rinobvisirwa kushanya kwechiremba uye bvunzo, inova $ 2 250. Wake inishuwarenzi mupi zvakare anoisa yakakwira yegore pamari yekunze-kwehomwe mari yekugara muchipatara, inova $ 6,250 pagore.

Iine inishuwarenzi yehutano iri muruoko, Meg akashanyira gastrointestinal (GI) nyanzvi. Akave nekolonoscopy uye yepamusoro GI endoscopy uye akaonekwa aine UC.

Mwedzi mishoma gare gare, akatamira kumba kunogara nevabereki vake muVacaville, California.

Panguva iyoyo, Meg anga atanga kutora mushonga wemumuromo unoshandiswa kurapa kuzvimba mumatumbu ezasi. Kunyangwe aine inishuwarenzi kufukidza, aive achibhadhara madhora mazana matatu nemakumi matatu muhomwe pamwedzi pakurapwa uku. Asi iye aive achiri kuenda kuchimbuzi zvakanyanya, achinzwa kurwadziwa mudumbu, uye kuva nefivhiri-senge zviratidzo senge muviri kurwadza uye kutonhora.

Meg anga ave achingobata nekurwadziwa kusingaperi kwemusana kwemakore. Mushure mekukudziridza zviratidzo zveUC, kurwadziwa kwake kumashure kwakanyanya kuwedzera.

"Handina kugona kufamba," Meg akayeuka. "Ndakanga ndakatsetseka pasi, ndisingakwanise kufamba."

Akabatana neyechiremba chitsva cheGI kuchipatara chemuno, uyo akamutumira kuna rheumatologist. Akamuona aine sacroiliitis, kunova kuzvimba kwemajoini anobatanidza musana wako wepazasi kusvika muchiuno.

Mune ongororo ichangoburwa yakaburitswa muArthritis Kuchengeta uye Ongororo, vaongorori vakawana kuti sacroiliitis inokanganisa vangangoita vanhu vane UC. Kunyanya kazhinji, kuzvimba kwekubatana ndiko kwakajairika kusiri-kwematumbu kuomarara kweBD, inoshuma iyo Crohn's & Colitis Foundation.

Meg's rheumatologist akamunyevera kuti yakawanda yemishonga inoshandiswa kurapa sacroiliitis inoita kuti UC iwedzere. Infliximab (Remicade, Inflectra) yakanga iri imwe yemishonga mishoma yaaigona kutora kugadzirisa mamiriro ese ari maviri. Aizoda kushanyira chipatara vhiki ina dzese kuti agamuchire infliximab kubva kuna mukoti.

Meg akamira kutora mushonga wepamuromo waaive uye akatanga kugamuchira infusions ye infliximab. Haana kubhadhara chero chinhu muhomwe nekuda kweiyi infusions kwemakore ekutanga mashoma. Anomupa inishuwarenzi akanhonga chikwereti chemadhora 10 425 pakurapwa.

Meg's GI nyanzvi zvakare yakaraira steroidal enemas kubatsira kudzikisa kuzvimba mumatumbu ake ezasi. Akabhadhara madhora makumi matatu kubva muhomwe paakazadza tsamba yemushonga uyu. Aifanira kungoizadza kamwe chete.

Nemishonga iyi, Meg akatanga kunzwa zvirinani.

“Chandakambofunga yaive zero zero yekurwadziwa, ndizvo chaizvo zvakaita mana pachikamu chekurwadziwa. Ini ndanga ndangozvijairira. "Uye kamwe pandakanga ndiri pamushonga, zvainge zvakaita, maiwe zvangu, ndanga ndichigara mukurwadziwa kukuru uye handina kana kuzviziva."

Iyo nguva yenyaradzo haina kugara kwenguva refu.

Vanhu vazhinji vane UC vanopinda munguva dzekuregererwa dzinogona kupedza vhiki, mwedzi, kana kunyangwe makore. Kuregererwa ndipo apo zviratidzo zvechirwere chisingaperi senge UC zvinonyangarika. Iyi nguva isina zviratidzo haina fungidziro. Iwe hauzomboziva kuti vanozogara kwenguva yakareba sei uye kana iwe uchinge uine imwe flare.

Meg akawana nguva yake yekutanga yekuregererwa kubva muna Chivabvu 2014 kusvika munaGunyana wegore rimwe chetero. Asi pakazosvika Gumiguru, aive achisangana nezviratidzo zvinodzikisira zveUC zvakare. Kuongororwa kweropa uye colonoscopy kwakaratidza huwandu hwekuputika.

Munguva yese yakasara ya2014 na2015, Meg akashanyira chipatara kakawanda kurapa zviratidzo uye kunetseka kwemarasha, kusanganisira kurwadziwa uye kupera simba kwemvura.

“Kushaya mvura mumuviri ndicho chinhu chinonyanya kukuwana. Zvinotyisa. "

Iye GI nyanzvi akaedza kudzora chirwere nemishonga yekunyorera - kwete chete infliximab uye steroidal enemas, asiwo prednisone, 6-mercaptopurine (6-MP), allopurinol, antibiotics, nevamwe. Asi mishonga iyi yanga isingakwani kumuchengeta ari mukuregererwa.

Mushure meimwe kuburitswa nekuchengetwa muchipatara kutanga kwegore ra2016, Meg akasarudza kuvhiyiwa kuti abvise colon yake pamwe nerumumumu. Anofungidzirwa vanhu vane UC vanoda kuvhiyiwa kuti varape mamiriro acho.

Meg akaita kekutanga kwekuvhiya kuviri muna Chivabvu 2016. Chikwata chake chekuvhiya chakabvisa colon yake uye rectum uye chakashandisa chikamu chemuura wake mudiki kugadzira "J-homwe." Iyo J-pouch yaizopedzisira yashanda sekutsiva kwake rectum.

Kuti aipe nguva yekuporeswa, chiremba wake akavhiya mugumo wakatemwa wemuviri wake mudiki kune kuvhurika kwenguva mudumbu rake - stoma iyo yaaigona kupfuudza chigaro muhombodo yeileostomy.

Akave nekuvhiyiwa kwake kwechipiri muna Nyamavhuvhu 2016, apo timu yake yekuvhiya yakabatanidzazve ura hwake mudiki kuJ-homwe. Izvi zvaizomutendera kuti apfuure zvigaro zvakanyanya kana zvishoma, pasina bhegi reileostomy.

Yekutanga yeaya mashandiro anodhura $ 89,495. Mari iyoyo haina kusanganisira mazuva mashanu ekuchengetwa-muchipatara uye bvunzo dzaakatambira mushure, zvakadhura imwe $ 30,000.

Kuvhiya kwechipiri kwakadhura $ 11,000, pamwe ne $ 24,307 kwemazuva matatu ekuchengetwa-muchipatara uye kuyedzwa.

Meg akapedza mamwe mazuva makumi maviri nemana muchipatara kuti awane kurapwa kwepancreatitis, pouchitis, uye postoperative ileus.Iko kugara kunomubhadharira mari inokwana kuita $ 150,000.

Pakazara, Meg akaiswa muchipatara katanhatu muna 2016. Asati apera kushanya kwake, akarova muganho wepagore wakatarwa nemupi wake weinishuwarenzi pakubuda muhomwe mari yekugara muchipatara. Aingofanira kubhadhara madhora mazana matanhatu pakuvhiya kwekutanga.

Kambani yake yeinishuwarenzi yakatora iyo yasara yetab - mazana ezviuru zvemadhora muzvikwereti zvemuchipatara izvo mhuri yake ingadai yaifanira kubhadhara kana iye asina kuvimbiswa.

Kuenderera mberi bvunzo uye kurapwa

Kubva paakarapwa muchipatara muna 2016, Meg anga ari pamushonga wekugadzirisa mamiriro ake. Iye ave zvakare achitevera zvakanyatsonaka zvine mwero kudya, achitora maprobiotic ekuwedzera, uye achidzidzira iyo yoga kuchengetedza ura hwake uye majoini akagwinya.

Hapana chimwe cheizvi marapiro anodhura sekugara muchipatara, asi iye anoramba achibhadhara chakakosha mari mumishuwarenzi yemwedzi nemwedzi, macopay mhosva, uye mari yemubhadharo yekuchengetwa.

Semuenzaniso, anga aine imwechete colonoscopy pagore kubvira 2014. Kune imwe neimwe yemaitiro aya, akabhadhara madhora mazana mana mumari dzekunze-muhomwe. Iye zvakare akaita kuti J-pouch yake iongororwe mushure mekuvhiyiwa, izvo zvakamutorera $ 1,029 mumari dzekunze-muhomwe.

Iye achiri kugamuchira infusions ye infliximab yekurapa marwadzo akabatana. Kunyangwe iye zvino achiwana kumukiswa kumwechete kwevhiki sere pachinzvimbo chemavhiki matanhatu ega ega. Pakutanga, aisabhadhara chinhu muhomwe kurapwa uku. Asi kutanga muna2017, nekuda kweshanduko mubumbiro ravo hombe, mupi wake weinishuwarenzi akatanga kushandisa mari yeinishuwarenzi.

Pasi pemuenzaniso mutsva wemari yekusimbisa mari, Meg anobhadhara $ 950 kubva muhomwe yega yega infusion ye infliximab yaanogamuchira. Yake inobviswa pagore haishande kune idzi mhosva. Kunyangwe akairova rake rakabviswa, iye achazofanira kubhadhara zviuru zvemadhora pagore kuti agamuchire kurapwa ikoko.

Iye anoona iyo yoga inobatsira kugadzirisa marwadzo uye kubvisa kushushikana. Kuchengetedza kushushikana kwake pasi kunomubatsira kuti arege kupisa. Asi kuenda kumakirasi eyoga nguva dzese kunogona kudhura, kunyanya kana iwe uchibhadhara yekudonha-mukushanya pane kupasa kwemwedzi.

“Zvinodhura kana ukatenga mwedzi usina muganho, asi mumwe wemhedzisiro yekuti ini ndive nechirwere changu ndechekuti handinzwe kusununguka kutenga chero muganho chero chinhu kana kutenga zvinhu pamberi. Nekuti pese pandakaita izvi, ndakaiswa muchipatara kana kurwara zvekutadza kushandisa zvandakatenga. "

Meg anoita yakawanda yeyoga yake kumba, achishandisa $ 50 foni app.

Kuwana raramo

Kunyangwe aikwanisa kupedzisa dhigirii rake, Meg akaona zvakaoma kuwana nekuchengetedza basa nekugadzirisa zviratidzo zveUC uye kurwadziwa kusingaperi kwemajoini.

"Ini ndaizotanga kufunga nezvekufambidzana zvakare, ndaizotanga kufunga nezvekuvhima mabasa, zvese, uyezve hutano hwangu hwaibva hwatanga kudzikira," Meg akayeuka.

Akave anovimba nemari pane vabereki vake, avo vanga vari sosi yakakosha yekumutsigira.

Ivo vakabatsira kuvhara mutengo weyakawanda bvunzo uye kurapwa. Vakasimudzira pachinzvimbo chake paakanga achirwara zvakanyanya kuti ataurirane nevanopa hutano. Uye ivo vakapa rutsigiro rwepfungwa kumubatsira kutsungirira zvinakonzerwa nechirwere chisingaperi paupenyu hwake.

"Zvakaoma chaizvo kutora chaicho, pikicha yese yekuti kuita chirwere chakadai kunoitirei iwe nemhuri yako," akadaro Meg.

Asi zvinhu zvakatanga kutarisa kumusoro. Sezvo Meg akabviswa colon yake uye rectum yakabviswa, iye akaona zvishoma kwazvo zviratidzo zveGI. Akaona kuvandudzwa nemarwadzo ake akabatana.

“Hupenyu hwangu hwakanakisa nezvikamu makumi mapfumbamwe nemapfumbamwe kubva muzana. Kune iyo 1 muzana iyo munhu anotarisa mukati mehupenyu hwangu ane hutano hwakanaka chaizvo uye asina kumbobvira awana chero dambudziko rekugaya - vangangofunga kuti ndiri munhu anorwara. Asi nemaonero angu, zviri nani kwazvo. ”

Meg akatanga kushanda kubva kumba semunyori anoshanda akazvimirira uye mutori wemifananidzo, izvo zvinomupa kutonga pamusoro pekuti uye anoshanda kwenguva yakareba sei. Iye zvakare ane blog yekudya, Meg Zvakanaka.

Pakupedzisira, anotarisira kuzove akazvimiririra mune zvemari zvakakwana kuti akwanise kubhadhara mari yekurarama nechirwere chisingaperi ari ega.

"Ndinovenga kuti vabereki vangu vanofanirwa kundibatsira kubuda," akadaro, "kuti ndiri mukadzi ane makore makumi matatu nerimwe anofanirwa kuvimba nerubatsiro nerutsigiro rwemari rwevabereki vake. "Ini ndinovenga izvo chaizvo, uye ndinoda kuedza kutsvaga nzira yekuti ndingangozvitora ndoga."