Iindleko zokuPhila nge-Ulcerative Colitis: Ibali leMeg

Umxholo

• Ukufumana isifo kunye nonyango
• Uvavanyo oluqhubekayo kunye nonyango
• Ukufumana umvuzo

Kuyaqondakala ukuba uzive ungakulungelanga emva kokuba kufunyaniswe ukuba unesifo esinganyangekiyo. Ngequbuliso, ubomi bakho bumisiwe kwaye izinto eziphambili ngokubaluleka ziyatshintsha. Impilo yakho kunye nentlalontle yeyona nto ujolise kuyo kwaye amandla akho azinikele ekufumaneni unyango.

Uhambo oluya ekuphilisweni alusoze lulula, kwaye kusenokwenzeka ukuba uya kudibana nezithintelo ezimbalwa apha endleleni. Omnye wale miqobo, ewe, yindlela yokuhlawula iindleko zokulawula imeko engapheliyo.

Kuxhomekeka kwiimeko zakho, unokuba ne-inshurensi yezempilo kunye nengeniso eyoneleyo yokuhlawulela unyango lwakho ngaphandle kokukhathazeka kakhulu.

Okanye, kusenokwenzeka ukuba uphakathi kwiminyaka engama-20 ubudala, awuqinisekiswanga, esikolweni, kwaye usebenza umsebenzi wesingxungxo weedola ezili-15 ngeyure. Oku koko kwenzekayo kuMeg Wells.

Kwakungu-2013 kwaye uMeg wayesandula ukuqala inkqubo yenkosi kwiYunivesithi yaseSonoma State. Wayefunda ulawulo lwezixhobo zenkcubeko, ngethemba lokuba ngenye imini uza kusebenza kumyuziyam wembali njengomgcini.

UMeg wayeneminyaka engama-26, ehlala yedwa, kwaye esebenza umsebenzi wesingxungxo. Wayenemali nje eyaneleyo yokuhlawulela irente kunye nemirhumo eyahlukeneyo yesikolo. Kodwa umhlaba wakhe wawuza kutshintsha ngokukhawuleza.

Okwethutyana, uMeg wayefumana izinto ezinje ngokugaya okungalunganga, irhasi kunye nokudinwa. Wayexakeke ngumsebenzi kunye nezifundo zokuthweswa isidanga, ngenxa yoko wakubekela amangomso ukuya kugqirha.

Ngo-Novemba ka-2013, nangona kunjalo, iimpawu zakhe zaba luloyiko ukungahoyi.

"Ndandiye kwigumbi lokuhlambela kakhulu," watsho, "kulapho ke ndaqala khona ukubona igazi, kwaye ndandifana, kulungile, kukho into eyonakeleyo, ayilunganga kwaphela."

I-ulcerative colitis (UC) luhlobo lwesifo sokukrala kwamathumbu (IBD) esenza ukuba ukudumba kunye nezilonda zikhule emathunjini amakhulu. Kwiimeko ezininzi, esi sifo sikhula kancinane kwaye siba mandundu ngokuhamba kwexesha.

Oyena nobangela wale meko akaziwa, kodwa abaphandi bakholelwa ukuba ufuzo, imeko yokusingqongileyo, kunye nenkqubo yomzimba yokuzikhusela emzimbeni engasebenziyo inokudlala indima.

Igazi esitulweni luphawu oluqhelekileyo lwe-UC. Xa uMeg waqaphela igazi, wayesazi ukuba lixesha lokuba afumane uncedo.

UMeg wayengenayo i-inshurensi yezempilo ngelo xesha. Kwakufuneka ahlawule amakhulu eedola epokothweni ngalo lonke utyelelo lukagqirha, iimvavanyo zegazi, kunye novavanyo lwelindle olwaluthatha ukuthintela izizathu eziqhelekileyo zeempawu zakhe.

Emva kotyelelo oluninzi, iqela lakhe lokhathalelo lwempilo lwakwazi ukunciphisa unobangela weempawu zakhe kwi-UC, isifo sikaCrohn, okanye umhlaza wekolon.

Omnye woogqirha bakhe wacebisa ukuba kusenokuba bubulumko ukulinda de abe neinshurensi yezempilo ngaphambi kokuba athabathe inyathelo elilandelayo - ikholonoscopy. Le nkqubo inokuxabisa ukuya kuthi ga kwi-4,000 yeedola ngaphandle kwe-inshurensi.

Ngomzuzu wokuphelelwa lithemba, wathenga isicwangciso seinshurensi yezempilo kumthengisi. Kodwa wathi akufumanisa ukuba ayizukugubungela naziphi na iinkonzo zempilo kwingingqi yakhe, kwafuneka arhoxise isicwangciso.

"Emva koko, abazali bam bathatha indawo kuba bendigula kakhulu ukuba ndingade ndijongane nayo," utshilo uMeg. Ngelo xesha, ndandisopha nje kwaye ndibuhlungu kakhulu. ”

Ukufumana isifo kunye nonyango

Ekuqaleni kuka-2014, uMeg wabhalisa kwisicwangciso se-inshurensi yezempilo ye-Silver HMO ngo-Kaiser Permanente ngoncedo losapho. Ukugcina ingxelo, uhlawula iipremiyamu ze- $ 360 ngenyanga. Eli nqanaba liya kunyuka liye kwi-450 yeedola ngenyanga ngo-2019.

Ukwanoxanduva lokuhlawulisa ikopay okanye ukuhlawulwa kwemali kumayeza akhe amaninzi, undwendwelo lukagqirha, iinkqubo zonyango, ukunyamekela abaguli, kunye novavanyo lwelebhu. Kuphela zezinye zezo ntlawulo zibalelwa ekuthothweni kwakhe konyaka kutyelelo logqirha kunye novavanyo, eyi- $ 2,250. Umboneleli wakhe weinshurensi ukwabeka ubuninzi bonyaka kwinkcitho ephuma epokothweni yokuhlala esibhedlele, eyi- $ 6,250 ngonyaka.

Ngomshuwalense wezempilo esandleni, uMeg watyelela ingcali yesisu (GI). Ufumene i-colonoscopy kunye ne-GI endoscopy ephezulu kwaye wafumanisa ukuba une-UC.

Kwiinyanga ezimbalwa kamva, wafuduka waya kuhlala nabazali bakhe eVacaville, California.

Ngelo xesha, uMeg wayeqale ukuthatha iyeza lomlomo elisetyenziselwa ukunyanga ukudumba emathunjini asezantsi. Ngaphandle kwe-inshurensi, wayehlawula malunga ne-350 yeedola epokothweni ngenyanga ngalolu nyango. Kodwa wayesaya kwigumbi lokuhlambela kakhulu, eneentlungu esiswini, kwaye eneempawu ezinje ngomkhuhlane ezinje ngomzimba kunye nokugodola.

UMeg wayekhe wajongana nentlungu engapheliyo emva kweminyaka. Emva kokuba evelise iimpawu ze-UC, iintlungu zakhe zangasemva zaba mbi kakhulu.

"Andikwazi ukuhamba," ukhumbule uMeg. “Bendithe tyaba emhlabeni, ndingakwazi nokushukuma.”

Unxibelelane nengcali entsha ye-GI kwisibhedlele sendawo, eyamthumela kugqirha wamathambo. Wamfumanisa ukuba une-sacroiliitis, kukudumba kwamalungu adibanisa umqolo wakho ongezantsi kwinyongo.

Kuphando lwakutsha nje olupapashwe kuKhathalelo lweArthritis kunye noPhando, abaphandi bafumanise ukuba i-sacroiliitis ichaphazela phantse abantu abane-UC. Ngokubanzi, ukudumba ngokudibeneyo yeyona nto ixhaphakileyo ngaphandle kwesisu kwi-IBD, inika ingxelo yeCrohn's & Colitis Foundation.

I-rheumatologist kaMeg yamlumkisa ukuba amayeza amaninzi asetyenziselwa ukunyanga i-sacroiliitis ayenza mandundu i-UC. I-infliximab (i-Remicade, i-Inflectra) sesinye seziyobisi ezimbalwa anokuzithatha ukulawula iimeko zombini. Kuya kufuneka ukuba atyelele esibhedlele rhoqo kwiiveki ezine ukuze afumane ukumiliselwa kwe-infliximab kumongikazi.

UMeg wayeka ukuthatha ichiza lomlomo awayekulo kwaye waqala ukufumana ukumiliselwa kwe-infliximab. Akakhange ahlawule nantoni na epokothweni ngezi infusions kwiminyaka embalwa yokuqala. Umboneleli wakhe weinshurensi uthathe i-10, 425 yeedola kunyango ngalunye.

Ingcali ye-Meg's GI ikwachaze i-enemodial steroid enemas ukunceda ukunciphisa ukudumba emathunjini asezantsi. Wahlawula malunga ne-30 yeedola epokothweni xa wayegcwalisa amayeza eli yeza. Kwakufuneka ayigalele kube kanye.

Ngezi zonyango, uMeg waqala ukuziva engcono.

“Into endakha ndacinga ukuba bubungakanani bentlungu, kodwa eneneni isine kwisikali seentlungu. Ndisandul 'ukuyiqhela. Kwaye kanye xa ndandisele amayeza, kwakungathi, oh nkosi yam, bendihlala kwiintlungu ezingathethekiyo ndingaziqondi.

Elo xesha lokuthuthuzeleka alizange lihlale ixesha elide.

Uninzi lwabantu abane-UC bahamba ngamaxesha oxolelo anokuhlala iiveki, iinyanga, okanye iminyaka. Ukuxolelwa kuxa iimpawu zesifo esinganyangekiyo njenge-UC zinyamalala. La maxesha angenazimpawu awanakulindeleka. Awusoze wazi ukuba ziya kuhlala ixesha elingakanani kwaye uya kuba nenye nini i-flare.

UMeg wafumana ixesha lakhe lokuqala lokuxolelwa ukusukela ngoMeyi 2014 kude kube nguSeptemba kwakuloo nyaka. Kodwa ngo-Okthobha, wayefumana iimpawu eziwohlokayo ze-UC kwakhona. Uvavanyo lwegazi kunye nekholonoscopy kutyhila amanqanaba aphezulu okuvuvukala.

Kuwo wonke u-2014 kunye no-2015, uMeg watyelela isibhedlele amatyeli amaninzi ukunyanga iimpawu kunye neengxaki zomlilo, kubandakanya iintlungu kunye nokuphelelwa ngamanzi emzimbeni.

“Ukuphelelwa ngamanzi emzimbeni yeyona nto ikufumanisayo. Kuyothusa. ”

Ingcali yakhe ye-GI izamile ukulawula isifo ngamayeza amiselweyo- kungekuphela nje i-infliximab kunye ne-steroidal enemas, kodwa kunye ne-prednisone, 6-mercaptopurine (6-MP), allopurinol, antibiotics, kunye nabanye. Kodwa la machiza ebengonelanga ukumgcina exolelwe.

Emva kolunye ulusu kunye nokulaliswa esibhedlele kwangoko ku-2016, uMeg wagqiba kwelokuba enze utyando ukuze kususwe ikholon kunye ne-rectum yakhe. Uqikelelo lwabantu abane-UC bafuna utyando ukunyanga le meko.

U-Meg wenza utyando lokuqala kwezimbini ngoMeyi ka-2016. Iqela lakhe lotyando lasusa ikholon kunye ne-rectum laze lasebenzisa inxalenye yamathumbu alo amancinci ukwenza i "J-poch". I-J-poouch iya kuthi ekugqibeleni isebenze njengendawo yokutshintsha i-rectum yayo.

Ukuze ayinike ixesha lokuphola, ugqirha wakhe otyandayo wancamathela isiphelo esinqunqiweyo samathumbu akhe amancinci kwindawo evulekileyo esiswini sakhe - isigxina awayenokugqitha kuso ukuya kwingxowa ye-ileostomy.

Wahlinzwa okwesibini ngo-Agasti 2016, xa iqela lakhe lotyando laphinda lahlanganisa amathumbu akhe amancinci kwi-J-poch. Oku kuyamvumela ukuba agqithe isitulo ngokungaphezulu nangaphantsi kwesiqhelo, ngaphandle kwengxowa ye-ileostomy.

Iyokuqala yale misebenzi ixabisa i-89,495 yeedola. Le ntlawulo ayibandakanyi iintsuku ezintlanu zokunyamekela esibhedlele kunye neemvavanyo azifumene emva koko, ezibiza enye i-30,000 yeedola.

Umsebenzi wesibini waxabisa i-11,000 yeedola, kunye ne-24,307 yeedola kwiintsuku ezintathu zokhathalelo kunye nokuvavanywa esibhedlele.

UMeg wachitha ezinye iintsuku ezingama-24 esibhedlele ukuze afumane unyango lwe-pancreatitis, pouchitis, kunye ne-postus operative ileus.Ezo ndawo zokuhlala zimbiza ama-150,000 eedola.

Lilonke, uMeg walaliswa esibhedlele izihlandlo ezithandathu ngo-2016. Ngaphambi kokuphela kotyelelo lwakhe, wabetha umda wonyaka obekwe ngumnikezeli wakhe weinshurensi kwinkcitho ephuma epokothweni yokuhlala esibhedlele. Kwafuneka ahlawule kuphela iidola ezingama-600 ukuya kuqhaqho lokuqala.

Inkampani yakhe yeinshurensi ithathe yonke enye itab - amakhulu amawaka eedola kwizibhedlele zesibhedlele ebeya kuthi ngenye imini ahlawule xa engakhuselwanga.

Uvavanyo oluqhubekayo kunye nonyango

Ukusukela oko walaliswa okokugqibela ngo-2016, uMeg ebekwiyeza ukuze alawule imeko yakhe. Uye walandela ukutya okunesondlo ngononophelo, ethatha izongezo zeprobiotic, kunye nokuziqhelanisa neyoga ukugcina amathumbu kunye namalungu esempilweni.

Akukho nanye kwezi zonyango ebiza kakhulu njengokuhlala esibhedlele, kodwa uyaqhubeka nokuhlawula isixa esikhulu kwiipremiyamu zenyanga zeinshurensi, iintlawulo zeepopay, kunye neerhafu zokuhlawulwa kwemali.

Umzekelo, ubuncinci wayenekolonoscopy enye ngonyaka ukusukela ngo-2014. Nganye yezo nkqubo, uhlawule i-400 yeedola kwimali ephuma epokothweni. Uye wavavanywa i-J-poch yakhe emva kotyando, eyabiza i-1,029 yeedola kwimirhumo yokuphuma epokothweni.

Usamkela infusions ye-infliximab ukunyanga iintlungu ezidibeneyo. Nangona ngoku efumana ukumiliselwa kube kanye kwiiveki ezisibhozo endaweni yeeveki ezintandathu. Ekuqaleni, wayengahlawuli kwanto epokothweni ngolu nyango. Kodwa ukuqala ngo-2017, ngenxa yotshintsho kumgaqo-nkqubo wabo omkhulu, umboneleli wakhe weinshurensi waqala ukusebenzisa intlawulo yemali.

Ngaphantsi kwemodeli entsha ye-coinsurance, i-Meg ihlawula i-950 yeedola epokothweni kulwaziso ngalunye lwe-infliximab elufumanayo. Ukutsalwa kwakhe kwemali yonyaka akusebenzi kwezi ntlawulo. Nokuba uthe wabetha ngokutsalwa kwakhe, kuya kufuneka ahlawule amawaka eedola ngonyaka ukufumana olo nyango.

Ufumanisa ukuba iyoga iluncedo ekulawuleni iintlungu nasekunciphiseni uxinzelelo. Ukugcina amanqanaba oxinzelelo kuye kumnceda ukuba aphephe ukutsha. Kodwa ukuya kwiiklasi zeyoga rhoqo kunokuba yindleko enkulu, ngakumbi ukuba ubhatalela ukutyelelwa ngaphakathi kunokudlula ngenyanga.

“Kubiza ixabiso eliphantsi ukuba uthenga inyanga engenamda, kodwa esinye seziphumo zokuba ndibe nesifo sam kukuba andiziva ndikhululekile ukuthenga nantoni na engenamda okanye ukuthenga izinto kwangaphambili. Kuba ngalo lonke ixesha ndiyenzile loo nto, ndiye ndalala esibhedlele okanye ndigula kakhulu ukuba ndingasebenzisa okanye ndithathe into endiyithengileyo. "

UMeg wenza uninzi lweyoga yakhe ekhaya, esebenzisa usetyenziso lweefowuni ezingama- $ 50.

Ukufumana umvuzo

Nangona wayekwazi ukugqiba idigri ye-master, uMeg ufumene nzima ukufumana nokugcina umsebenzi ngelixa elawula iimpawu ze-UC kunye nentlungu engapheliyo yokudibanisa.

"Ndiya kuqala ukucinga ngokuthandana kwakhona, ndiza kuqala ukucinga ngokuzingela imisebenzi, yonke into, kwaye ke impilo yam iya kuqala ukuhla," kukhumbula uMeg.

Waba ngumxhomekeki ngokwezimali kubazali bakhe, ababe ngumthombo obalulekileyo wokumxhasa.

Baye banceda ukuhlawula iindleko zovavanyo oluninzi kunye nonyango. Baye bammela egameni lakhe xa wayegula kakhulu ukunxibelelana nababoneleli ngezempilo. Kwaye banikezele ngenkxaso yeemvakalelo ukumnceda ukuba ajamelane neziphumo zokugula okunganyangekiyo kubomi bakhe.

"Kunzima kakhulu ukuthatha okwenyani, umfanekiso opheleleyo wento yokuba nesifo esifana nesi usenza kuwe nakwintsapho yakho," utshilo uMeg.

Kodwa izinto ziqale ukujonga phezulu. Kuba iMeg yayisuswe ikholoni kunye ne-rectum, uye wafumana iimpawu ezimbalwa kakhulu ze-GI. Ubone ukuphucuka kwentlungu edibeneyo.

“Ubomi bam bubhetele ngeepesenti ezingama-99. Kukho iipesenti ezi-1 zokuba umntu ujonge ebomini bam onempilo elungileyo kwaye engazange abe nazingxaki zokugaya ukutya - baya kucinga ukuba ndingumntu ogulayo. Kodwa ngokokubona kwam, kungcono kakhulu. ”

UMeg uqalile ukusebenza ekhaya njengombhali ozimeleyo kunye nomfoti, emnika ulawulo lokuba uhlala phi kwaye usebenza ixesha elingakanani. Uneblogi yokutya, iMeg ilungile.

Ekugqibeleni, unethemba lokuzimela ngokwaneleyo ngokwasemalini ukuze akwazi ukulawula iindleko zokuphila nesifo esinganyangekiyo eyedwa.

"Ndiyayithiya into yokuba abazali bam kufuneka bandincede," utshilo, "ukuba ndingumfazi oneminyaka engama-31 ekufuneka axhomekeke kuncedo nakwinkxaso yemali yabazali bakhe. Ndiyayicaphukela loo nto, kwaye ndifuna ukuzama ukufumana indlela endinokuyenza ngayo ndodwa. ”