Mutengo Wekurarama neUlcerative Colitis: Nyaya yaNyannah

Zvemukati

• Kutsvaga kuongororwa
• Iyo miedzo uye zvikanganiso zvekurapa
• Kubhadhara mari yekuchengeta
• Kugadzirira ramangwana

Mushure megore rinopfuura gore, Nyannah Jeffries achiri kubhadhara bhiri rekutanga rechipatara raakatambira mukutsvaga kwake kuti aone kuti chii chiri kukonzera marwadzo emudumbu aange achisangana nawo.

Nyannah akashanyira dhipatimendi redunhu redunhu remunharaunda muna Gumiguru 2017 mushure mekuona ropa muchigaro chake. Akange asina inishuwarenzi yehutano panguva iyoyo, saka kushanya kuchipatara kwaifanirwa kuve nemutengo.

"Kutanga ndakaenda kuimba yekukurumidzira, uye vakati havana chavakaona," akadaro Healthline, "asi ini ndaive senge, 'Kwete, ndiri kurasikirwa neropa, uye ndinoziva kuti pane zviri kuitika.'"

Chipatara chakamhanyisa bvunzo paNyannah, asi hachina kusvika pakuongororwa. Akaburitswa asina chero mushonga, kurudziro yekuwana chiremba wemimba (GI), uye bhiri rinosvika madhora zviuru zvishanu.

Yakanga isiri mwedzi yakati gare gare apo Nyannah akaonekwa aine ulcerative colitis (UC), rudzi rwechirwere chinoputira ura chinokonzera kuzvimba nemaronda kukura mukati memukati memukati mehomba huru (colon).

Kutsvaga kuongororwa

Nyannah akatanga kuvandudza zviratidzo zveUC aine makore makumi maviri. Akanga achigara naamai vake nasekuru nasekuru uye achishanda-chikamu-nguva semubatsiri wekutengesa kuna Clinique.

MunaNovember 2017, mwedzi mushure mekushanya kwake kune dhipatimendi rekukurumidzira, akachinja kubva pazve-nguva kuenda pachinzvimbo chenguva yakazara-pabasa rake.

Shanduko iyi yakamuita kuti akodzere chirongwa cheinishuwarenzi chehutano chinotsigirwa nemushandirwi.

"Kubasa kwangu, ndaive ndisiri-wenguva, uye ivo vaindiitira nguva yakazara," akayeuka, "asi ndaida kuti vakurumidze kuita izvi kuti ndive neinishuwarenzi."

Paakangove neinishuwarenzi, Nyannah akashanyira kune kwake wekutanga muchengeti (PCP). Chiremba akafungidzira kuti Nyannah anogona kunge aine kusashivirira kweguteni uye akaraira kuongororwa kweropa kuti utarise chirwere cheCeliac. Miedzo iyoyo payakadzoka isina kana, akaendesa Nyannah kuGI kuti awedzere kuyedzwa.

Iyo GI yakaitisa endoscopy kuti iongorore mukati memukati weiyo Nyannah's GI turakiti. Izvi zvakakonzera kuongororwa kweUC.

Iyo miedzo uye zvikanganiso zvekurapa

Vanhu vane UC vanowanzoona nguva dzekuregererwa, kana zviratidzo zvavo zvanyangarika.Asi nguva idzodzo dzinogona kuteverwa nemaronda echirwere chiitiko apo zviratidzo zvinodzoka. Chinangwa chekurapa ndechekuzadzisa nekuchengetedza kuregererwa kwenguva yakareba sezvazvinogona.

Kubatsira kubvisa zviratidzo zvake uye kukurudzira kuregererwa, chiremba waNyannah akarayira mushonga wemumuromo unozivikanwa saLialda (mesalamine) uye tapered doses yeiyo steroid prednisone.

"Aizotora muyero we prednisone, zvichienderana nekuti zviratidzo zvangu zvainge zvichinzwa sei uye kuti ndairasikirwa neropa rakawanda sei," Nyannah akatsanangura.

"Saka, dai ndanga ndichirasikirwa nezvakawanda, akazvichengeta pa50 [mamirigiramu], uye kana ndangotanga kuve nani zvishoma, taizozvikanda pasi kuita kunge makumi mana nemashanu, ipapo makumi mana, makumi matatu nemashanu," akaenderera mberi, "Asi dzimwe nguva pandakazodzikira, kuda makumi maviri kana gumi, ipapo ndaitanga kubuda ropa zvakare, saka aibva azvidzorera."

Paaive achitora yakakwira doses ye prednisone, akavandudza zvinoonekwa mhedzisiro, kusanganisira kuomesa shaya, kuzvimba, uye kurasikirwa nevhudzi. Akarasikirwa nehuremu uye akanetseka nekuneta.

Asi kwemwedzi mishoma, zvirinani, kusanganiswa kwaLialda uye prednisone kwakaita sekumuchengeta zviratidzo zveGI zvichidzora.

Iyo nguva yekuregererwa haina kugara kwenguva refu, zvakadaro. MunaMay 2018, Nyannah akaenda kuNorth Carolina kunodzidziswa zvine chekuita nebasa. Paakadzokera kumba, zviratidzo zvake zvakadzoka nekutsiva.

"Handizive kana zvaingoitika nekuda kwekufamba kwangu uye kunetsekana kweizvozvo kana chii, asi mushure mekunge ndadzoka kubva ipapo, ndakave nemhirizhonga inotyisa. "Hapana kana mumwe wemishonga wandanga ndichinwa wanga uchishanda."

Nyannah aifanira kutora vhiki mbiri kubasa kuti apore, achishandisa mazuva ake ezororo aakabhadhara.

Her GI akamubvisa paLialda ndokumisira majekiseni eadalimumab (Humira), biologic drug inogona kubatsira kudzikisa kuzvimba mukoloni.

Haana kuvandudza mhedzisiro kubva kuHumira, asi akaona zvichinyengera kudzidza kuzvibaya-baya mushonga. Nhungamiro kubva kuna mukoti wekuchengetedza imba yakabatsira - asi chete kusvika padanho.

"Ndinofanira kuzvibaya jekiseni vhiki rega rega, uye pakutanga pakauya mukadzi wezvehutano kumba, ndaive senge pro," akadaro. “Ndaingozvibaya jekiseni. Ndanga ndakafanana, 'Ah, izvi hazvina kunyanya kushata.' Asi ndinoziva kana asipo, sekufamba kwenguva, dzimwe nguva unogona kunge uine zuva rakaipa kana zuva rakaomarara kwaunongoneta uye uri senge, 'Ah, zvangu, ndinotya kuzvibaya jekiseni.' ”

"Sezvo ini ndaita izvi senge makumi maviri nguva, ndinoziva kuti izvi zvichazonzwa sei," akaenderera mberi, "asi iwe uchiri kuwana chando chidiki. Ndicho chete chinhu. Ndiri senge, 'Zvakanaka, ndangofanira kudzikama, zorora, uye tora mushonga wako.' Nekuti iwe unofanira kufunga nezvazvo, pakupedzisira, izvi zvichandibatsira. "

Kubhadhara mari yekuchengeta

Humira inodhura. Sekureva kwechinyorwa chiri muNew York Times, avhareji mutengo wegore mushure mekudzoserwa wakakwira kubva pamadhora zviuru gumi nezvitatu pamurwere mugore ra2012 kusvika pamadhora makumi matatu nemasere emadhora pamunhu muna 2018

Asi kuna Nyannah, mushonga unovharwa muchikamu nehurongwa hweinishuwarenzi yehutano. Akanyoreswa zvakare muchirongwa chekudzoserwa kwemugadziri, icho chaunza mutengo pasi zvakare. Haana kubhadhara chero chinhu kubva muhomwe yemushonga kubva paakarova yake inishuwarenzi inobviswa ye $ 2,500.

Kunyangwe zvakadaro, iye achiri akatarisana nemari yakawanda-ye-muhomwe yekumubata UC, kusanganisira:

• $ 400 pamwedzi muzvirongwa zveinishuwarenzi
• $ 25 pamwedzi yeprobiotic inowedzera
• $ 12 pamwedzi yevhitamini D inowedzera
• $ 50 yekunyorwa kwesimbi paanoida

Iye anobhadhara $ 50 pakushanya kunoona iye GI, $ 80 pakushanya kunoona hematologist, uye $ 12 pakuongorora kwese kweropa kwavanoraira.

Iye zvakare anobhadhara $ 10 pakushanya kunoona chipangamazano wehutano hwepfungwa, uyo ari kumubatsira kukurira mhedzisiro iyo UC yakave nayo pahupenyu hwake uye pfungwa yake.

Nyannah aifanirwa kuita shanduko kuchikafu chake, futi. Kuti achengetedze zviratidzo zvake, anofanira kudya chibereko chitsva uye chikafu chisina kugadzirwa kupfuura zvaaiita. Izvo zvakawedzera mari yake yegirosari, pamwe nenguva yaanopedza achigadzirira kudya.

Pakati pemitengo yekugadzirisa mamiriro ake uye kufukidza mari yezuva nezuva yekushandisa, Nyannah anofanirwa kuronga mubhadharo wevhiki rega-wega.

"Ini ndinomboita kushungurudzika kana riri zuva rekubhadhara nekuti ndakafanana, 'ndine zvakawanda zvekuita," akadaro.

"Saka, pandinobhadharwa, ndinoedza uye ndinoiongorora," akaenderera mberi. “Ndiri seni, OK, ndinogona kungoita chete $ 10 ndakananga hematology nhasi ne $ 10 ndakananga kuprimary kwangu. Asi ndinogara ndichiedza kubhadhara vanachiremba vandinofanira kuona nguva dzose, uye mabhiri angu ekare, ndinogona kumbomira kusvika cheki inotevera kana kuedza kuronga navo. ”

Akadzidza nenzira yakaoma kuti zvakakosha kuisa pamberi zvikwereti kubva kuna vanachiremba izvo zvinoenderana nekugara uchichengetwa. Paakanonoka kubhadhara rimwe remabhiri ake, iye GI akamudonhedza semurwere. Aifanira kutsvaga imwe yekutora kurapwa kwake.

MunaNovember uno, chipatara chakatanga kushongedza mubairo wake kubhadhara chikwereti kubva kushanya kwake kwekutanga kwechimbichimbi muna Gumiguru 2017.

"Vaizondisheedza vachiti, 'Unofanira kubhadhara izvi, unofanira kubhadhara izvo,' zvine hukasha. Uye ini ndaive senge, 'Ndinoziva, asi ndine mamwe ese aya mabhiri. Handikwanise. Kwete nhasi. ’Izvi zvinogona kuzondisimbisa, uye saka zvinongova simba rekutonga.”

Kufanana nevanhu vazhinji vane UC, Nyannah anoona kuti kushushikana kunogona kukonzera kupisa uye kuita kuti zviratidzo zvake zviwedzere.

Kugadzirira ramangwana

Nyannah's human resources (HR) mumiriri uye maneja pabasa vanga vachinzwisisa zvehutano hwake.

"My counter manager weClinique, anonditsigira," akadaro. “Aizondiunzira Gatorade, nekuti ndinorasikirwa nemagetsi, uye ndinogaroona kuti ndaidya. Iye akafanana, 'Nyannah, iwe unofanirwa kuenda kuzororo. Unofanira kudya chimwe chinhu. ’”

"Uyezve, sekutaura kwandakaita, HR yangu, anotapira chaizvo," akaenderera mberi. “Anogara achiona kana ndichida nguva yekuzorora, anondirongedza zvinoenderana. "Uye kana ndikagadzwa nachiremba, ndinogara ndichienda kwavari vasati vaita zvirongwa, saka vanokwanisa kurongedza nekugadzirisa chero chavanoda kuti ndiende kumusangano iwoyo."

Asi kana Nyannah achinzwa kurwara zvekutadza kushanda, anofanirwa kutora nguva isina kubhadharwa.

Izvi zvinogadzira dhi rinoonekwa mubhadharo rake, zvichikanganisa mari yake kusvika padanho raanotadza kuwana. Kuti abatsire kuwana raramo, akatanga kutsvaga basa idzva nemubhadharo wakakwirira. Kuchengetedza inishuwarenzi yehutano kufukidza ndicho chinhu chikuru mukuvhima kwake basa.

Asati anyorera chinzvimbo, anotarisa webhusaiti yekambani kuti adzidze nezve mabhenefiti evashandi. Iye zvakare ari mukutaurirana nekwaanosangana naye kuHumira sezvo shanduko pabasa rake kana inishuwarenzi yehutano ingangokanganisa kukodzera kwake kuchirongwa chekudzoserwa kwemugadziri.

"Ndinofanira kutaura nemumiriri wangu weHumira," akatsanangura, "nekuti akafanana, 'Uchiri kuda kuve nechokwadi kuti unokwanisa kuwana mushonga wako wouvhara.'"

Nebasa idzva, anotarisira kuwana mari inokwana kwete kungobhadharira mabhiri ake ekurapa chete asi zvakare kuisa mari mukamera uye maturusi uye kudzidziswa kwaanoda kuvaka basa rekugadzira mhizha.

“Ndine mabhiri ese aya, uyezve ndichiri kufanira kuisa gasi mumota mangu kuti ndiende nekudzoka kubasa, ndichiri kuzotenga grocery, saka handichanyatsozvitengerei chinhu. "Ndosaka ndiri kuedza kutsvaga basa nyowani, kuti ndigowana kamari kekuwedzera kuti ndingowana zvimwe zvinhu zvandinoda."

Anodawo kuisa parutivi imwe mari yekubatsira kubhadhara mitengo yehutano hwaangangoda mune ramangwana. Paunenge uine hutano husingaperi mamiriro, zvakakosha kuronga kushamisika zvikwereti zvekurapa.

"Unofanirwa kufunga nezve mabhiri iwayo - uye anowanda," akatsanangura kudaro.

"Ndingati kuedza uye kukugadzirira izvo, senge, gara uchiedza kuisa chimwe chinhu padivi, nekuti hauzive."