Ke kumu kūʻai o ka noho ʻana me Ulcerative Colitis: Ka moʻolelo a Meg
Anter
Hoʻomaopopo ke ʻano o ka mākaukau ʻole ma hope o ka ʻike ʻia me ka maʻi maʻi mau. Koke, kau ʻia kou ola a hoʻololi i kāu mau mea nui. ʻO kou olakino a me kou olakino kou kumu nui a hoʻolaʻa ʻia kou ikehu i ka loaʻa ʻana o ka lāʻau.
ʻAʻole maʻalahi ka huakaʻi i ka hoʻōla, a e ʻike paha ʻoe i kekahi mau ālai ma ke ala. ʻO kekahi o kēlā mau mea keakea, ʻo ia nō, pehea e uku ai no ke kumukūʻai o ka mālama ʻana i kahi kūlana mau.
Kaukaʻi ʻia i kāu kūlana, loaʻa paha iā ʻoe ka ʻinikua olakino a lawa ka loaʻa kālā e uku ai no kāu mālama ʻana me ka hopohopo ʻole ʻole.
A i ʻole, aia paha ia i kou mau makahiki 20, kau ʻole ʻia, ma ke kula, a ke hana nei i kahi hana hapa manawa no $ 15 i hoʻokahi hola. ʻO kēia ka mea i hana ʻia iā Meg Wells.
ʻO 2013 a ua hoʻomaka wale ʻo Meg i kahi papahana haku ma ke Kulanui o Sonoma State. Ke aʻo nei ʻo ia i ka hoʻokele waiwai moʻomeheu, me ka lana o ka manaʻo e hana kekahi lā ma ka hale hōʻikeʻike mōʻaukala ma ke ʻano he kahu mālama.
ʻO 26 ʻo Meg, e noho ana ma kāna iho, a e hana nei i kahi hana hapa manawa. Ua lawa kāna kālā e uku ai no kona hoʻolimalima a me nā uku kula like ʻole. Akā e kokoke ana kona ao e huli i kahi loli.
No kekahi manawa, ua ʻike ʻo Meg i nā mea e like me ka palaka maikaʻi ʻole, ka ʻaila, a me ka luhi. Ua hana ʻo ia me ka hana a me ke aʻo puka, no laila ua haʻalele ʻo ia i ke kauka.
Ma Nowemapa o 2013, akā naʻe, makaʻu loa kāna mau ʻōuli e nānā ʻole.
"E hele ana au i ka lua i ka lua," wahi a ka wahine, a ʻo ia ka manawa i hoʻomaka ai wau e ʻike i ke koko, a like wau, OK, he mea ʻiʻo maoli nō kekahi. "
ʻO Ulcerative colitis (UC) kahi ʻano maʻi maʻi ʻōpū (IBD) e hoʻomohala i nā mumū a me nā ʻeha i loko o ka ʻōpū nui. I nā manawa he nui, ulu mālie ka maʻi a ʻinoʻino aʻe i ka hala ʻana o ka manawa.
ʻAʻole ʻike ʻia ke kumu pono o ke ʻano, akā manaʻo ka poʻe noiʻi he kuleana nui nā genetics, nā mea pili i ke kaiapuni, a me kahi ʻōnaehana paleʻāina overactive.
ʻO ke kōkō i ka stool kahi hōʻailona maʻamau o UC. I ka wā i ʻike ai ʻo Meg i ke koko, ua maopopo iā ia ua hiki i ka manawa e loaʻa ai ke kōkua.
ʻAʻohe ʻinikua olakino Meg i kēlā manawa. Ua pono ʻo ia e uku i mau haneli kālā mai ka ʻeke no nā kipa a pau a ke kauka, nā hoʻokolohua koko, a me nā hoʻāʻo o ka noho i lawe ʻia e kāpae i nā kumu maʻamau o kāna mau hōʻailona.
Ma hope o nā kipa pinepine ʻana, hiki i kāna hui olakino ke hōʻemi i ke kumu o kāna mau maʻi i UC, ka maʻi ʻo Crohn, a i ʻole ke kanesa maʻi kolone.
Ua ʻōlelo aku kekahi o kāna mau kauka he mea naʻaupō paha ke kali a hiki i ka loaʻa ʻana o kāna ʻinikua olakino ma mua o ka lawe ʻana i ka anuu hou - he kolonekia. Hiki ke loaʻa i kēia kaʻina hana a $ 4,000 me ka ʻole o ka ʻinikua.
I kahi manawa hopohopo, ua kūʻai ʻo ia i kahi hoʻolālā ʻinikua olakino mai kahi mea kālepa. Akā i kona ʻike ʻana ʻaʻole ia e uhi i nā lawelawe olakino i kona wahi, ua pono ʻo ia e hoʻopau i ka hoʻolālā.
"Ma hope o kēlā, ua lawe koʻu mau mākua no ka mea maʻi loa wau e hana pū me ia," i ʻōlelo ʻo Meg. "I kēlā manawa, ke kahe wale nei au a me ka nui o ka ʻeha."
Ke kiʻi nei i kahi hōʻailona a me ka lāʻau
I ke kakahiaka nui 2014, ua kākau inoa ʻo Meg i ka hoʻolālā ʻinikua olakino Silver 70 HMO ma o Kaiser Permanente me ke kōkua o kona ʻohana. No ka mālama ʻana i ka uhi ʻana, uku ʻo ia i nā uku no $ 360 i kēlā me kēia mahina. E hoʻonui kēia helu i $ 450 i kēlā me kēia mahina ma 2019.
ʻO ia nō ke kuleana no ka uku copay a i ʻole nā ʻinikua kālā i ka nui o kāna mau lāʻau, nā kipa ʻana a ke kauka, nā kaʻina hana i waho, ka mālama maʻi maʻi, a me nā hoʻokolohua lab. ʻO kekahi wale nō o kēlā mau uku i helu ʻia i kāna hoʻoliʻiliʻi makahiki no nā kipa a me nā hoʻāʻo ʻana, he $ 2,250. Hoʻonohonoho pū kāna mea hoʻolako ʻinikua i ka palena makahiki makahiki ma ka lilo o waho o ka ʻeke no ka noho haukapila, he $ 6,250 i kēlā me kēia makahiki.
Me ka ʻinikua olakino i ka lima, ua kipa ʻo Meg i kahi loea gastrointestinal (GI). Ua hele ʻo ia i kahi kolonekia a me ka endoscopy GI luna a ua ʻike ʻia me UC.
I kekahi mau mahina ma hope mai, ua neʻe ʻo ia i ka home e noho me kona mau mākua ma Vacaville, Kaleponi.
I kēlā manawa, ua hoʻomaka ʻo Meg i ka lāʻau lapaʻau i hoʻohana ʻia e mālama ai i ka mumū ma ka ʻōpū o lalo. ʻOiai me ka uhi ʻinikua, ke uku nei ʻo ia ma kahi o $ 350 mai ka ʻeke no kēlā me kēia mahina no kēia lapaʻau. Akā ke hele nui nei ʻo ia i ka lua i ka lua, ke ʻike nei i ka ʻeha o ka ʻōpū, a me nā ʻōuli e like me ke kuni e like me ke ʻeha o ke kino a me ka haʻalulu.
E hana pū ana ʻo Meg me ka ʻeha mau o ke kua mau no nā makahiki. Ma hope o kona hoʻomohala ʻana i nā ʻōuli o UC, ua nui loa ka ʻeha o kona kua.
"ʻAʻole hiki iaʻu ke hele wāwae," hoʻomanaʻo ʻo Meg. "Ua pālahalaha wau i ka honua, ʻaʻole hiki ke neʻe."
Ua pili ʻo ia me kahi loea GI hou ma kahi haukapila kūloko, nāna i kuhikuhi iā ia i kahi rheumatologist. Ua hōʻoia ʻo ia iā ia me ka sacroiliitis, ʻo ia ka mumū o nā hono e hoʻopili i kou kuamoʻo lalo i kou pelvis.
I loko o kahi noi hou i paʻi ʻia ma ka mālama ʻana i ka maʻi ʻaʻaiā a me ka noiʻi ʻana, ua ʻike nā kānaka noiʻi ua pili ka sacroiliitis i ka hapa nui o ka poʻe me UC. ʻO ka mea maʻamau, ʻo ka mumū hui ka mea maʻamau non-gastrointestinal komplication o IBD, hōʻike ʻo Crohn's & Colitis Foundation.
Ua aʻo aku ʻo Meg's rheumatologist iā ia i ka nui o nā lāʻau i hoʻohana ʻia e mālama ai i ka sacroiliitis e hōʻino ai iā UC. ʻO Infliximab (Remicade, Inflectra) kekahi o nā lāʻau liʻiliʻi i hiki iā ia ke lawe e mālama i nā kūlana ʻelua. Pono ʻo ia e kipa i ka haukapila i kēlā me kēia ʻehā pule e loaʻa ai ka infusion o infliximab mai kahi kahu maʻi.
Ua oki ʻo Meg i ka lawe ʻana i ka lāʻau ʻona ʻo ia a hoʻomaka i ka loaʻa ʻana o nā infusions o infliximab. ʻAʻole ʻo ia i uku i kekahi mea mai ka ʻeke no kēia mau infusions no nā makahiki mua. Ua hōʻiliʻili kāna mea hoʻolako ʻinikua i ka pila o $ 10,425 no kēlā me kēia lāʻau.
Ua kauoha pū kekahi loea ʻo Meg's GI i nā enemas steroidal e kōkua i ka hoʻēmi ʻana i ka mumū ma kona ʻōpū haʻahaʻa. Ua uku ʻo ia ma kahi o $ 30 ma waho o ka ʻeke ke hoʻopiha ʻo ia i ke kauka no kēia lāʻau. Hoʻokahi wale nō āna hoʻopiha.
Me kēia mau hoʻomaʻamaʻa, ua hoʻomaka ʻo Meg e hauʻoli.
"ʻO ka mea aʻu i manaʻo ai ma mua he zero ka nui o ka ʻeha, ʻo ia ka mea maoli e like me ʻehā ma ka pae o ka ʻeha. ʻAkahi nō wau a maʻa. A laila i ka manawa aʻu e hele ai i ka lāʻau, ua like ia, e kuʻu aloha, ua noho wau i loko o ka ʻeha nui a ʻaʻole wau i ʻike. "ʻAʻole i lōʻihi kēlā wā hōʻoluʻolu.
ʻO ka hapa nui o nā poʻe me UC e hele i loko o nā wā o ke kala ʻana i hiki ke hala i mau pule, mau mahina, a i ʻole mau makahiki. ʻO ke kala ke nalowale nā ʻōuli o kahi maʻi maʻi e like me UC. ʻAʻole hiki ke wānana ʻia kēia mau manawa hōʻailona ʻole. ʻAʻole maopopo iā ʻoe pehea ka lōʻihi o ko lākou kū ʻana a ke loaʻa iā ʻoe kahi uila hou.
Ua ʻike ʻo Meg i kona wā kala kala mua mai Mei 2014 a Kepakemapa o kēlā makahiki. Akā ma ʻOkakopa, ua ʻike ʻē ʻo ia i nā ʻōuli palupalu o UC. Hōʻike nā hōʻike koko a me kahi kolonexopy i nā kiʻekiʻe kiʻekiʻe o ka mumū.
Ma ke koena o ka 2014 a me ka 2015, ua kipa ʻo Meg i ka haukapila i mau manawa he nui e mālama i nā hōʻailona a me nā pilikia o nā lapalapa, e like me ka ʻeha a me ka make wai.
"ʻO ka make wai ka mea e loaʻa maoli iā ʻoe. He weliweli. "Ua hoʻāʻo kāna loea GI e kaohi i ka maʻi me nā lāʻau i kuhikuhi ʻia - ʻaʻole wale ʻo infliximab a me nā enemal steroidal, akā ʻo prednisone hoʻi, 6-merc laptopurine (6-MP), allopurinol, antibiotics, a me nā mea ʻē aʻe. Akā ʻaʻole lawa kēia mau lāʻau e mālama iā ia i ke kala.
Ma hope o kahi lapalapa ahi a me ka haukapila i ka mua o ka 2016, ua hoʻoholo ʻo Meg e hana i kahi ʻokiʻoki e wehe i kāna kolone a me kāna kiko. Kuhi ʻia kahi poʻe o UC me ka ʻoki kino e mālama ai i kēia ʻano.
Ua hana ʻo Meg i ka hana mua o nā hana ʻelua i Mei 2016. Ua wehe kāna kime ʻoki kino i kona kolona a me kāna kiko, a ua hoʻohana i kahi ʻāpana o kāna ʻōpū liʻiliʻi e hana i kahi "J-pouch." E lilo ka J-pouch i pani no kāna ʻaoʻao.
No ka hāʻawi ʻana i ka manawa e hoʻōla ai, ua hoʻopili kāna lāʻau lapaʻau i ka hope ʻoki o kāna ʻōpū liʻiliʻi i kahi wehe manawa ʻole i loko o kona ʻōpū - kahi stoma e hiki ai iā ia ke komo i ka pahu i loko o kahi ʻeke ileostomy.
Ua hana ʻo ia i kāna hana lua ma ʻAukake 2016, i ka manawa i hoʻohui hou ai kāna kime ʻoki kino i kona ʻōpū liʻiliʻi i ka J-ʻeke. ʻAe kēia iā ia e hele i kahi noho ma mua a i ʻole ka liʻiliʻi maʻamau, me ka ʻole o kahi ʻeke ileostomy.
ʻO ka mua o kēlā mau hana he $ 89,495. ʻAʻole komo kēlā uku i nā lā ʻelima o ka mālama ʻana i ka haukapila a me nā hoʻokolohua i loaʻa iā ia ma hope, a he $ 30,000 hou aʻe.
ʻO ke kumu kūʻai ʻelua $ 11,000, me $ 24,307 no ʻekolu mau lā o ka mālama ʻana i ka haukapila a me ka hoʻāʻo ʻana.
Noho ʻo Meg i 24 mau lā hou i ka haukapila e loaʻa ai ka lāʻau no pancreatitis, pouchitis, a me ka ileus postoperative.Ua uku ʻia kēlā mau noho iā ia i kahi $ 150,000 hōʻuluʻulu.
Ma ka hōʻuluʻulu, ua loaʻa ʻo Meg i ka haukapila i ʻeono mau manawa ma 2016. Ma mua o ka pau ʻana o kāna kipa ʻana, ua hōʻea ʻo ia i ka palena makahiki i hoʻonoho ʻia e kāna mea hoʻolako ʻinikua no ka hoʻolilo kālā ʻana no ka noho haukapila. Ua uku wale ʻo ia i $ 600 i ka hana mua.
Ua hōʻiliʻili kāna ʻoihana ʻinikua i ke koena o ka tab - he mau haneli mau tausani kālā i nā bila o ka haukapila e uku ʻia e kona ʻohana inā ʻaʻole ʻo ia e inikua ʻia.
Nā ho'āʻo a me ka lāʻau e hoʻomau nei
Mai kona haukapila hope loa ma 2016, ua mālama ʻo Meg i ka lāʻau e hoʻomalu i kona ʻano. Ke ukali pū nei ʻo ia i ka papaʻai kaulike pono, lawe i nā supiotic probiotic, a hoʻomaʻamaʻa i ka yoga e mālama i ka ʻōpū a me nā hono maikaʻi.
ʻAʻohe o kēia ʻano lapaʻau e like me ke kumukūʻai e like me ka noho ʻana o ka haukapila, akā hoʻomau ʻo ia i ka uku ʻana i kahi nui i nā uku inikua o ka mahina, nā uku copay, a me nā uku hoʻolimalima kālā no ka mālama ʻana.
ʻO kahi laʻana, ua loaʻa iā ia ma ka liʻiliʻi he hoʻokahi kolonekia i kēlā me kēia makahiki mai ka makahiki 2014. No kēlā me kēia kaʻina hana, ua uku ʻia ʻo ia i $ 400 ma nā uku o waho o ka ʻeke. Ua loiloi pū ʻia ʻo ia e kāna J-pouch ma hope o ke kaha ʻana, a he $ 1,029 ka uku i uku ʻia ma waho o ka ʻeke.
Loaʻa iā ia nā infusions o infliximab e mālama i ka ʻeha pū. ʻOiai loaʻa iā ia i kēia manawa hoʻokahi infusion i kēlā me kēia ʻewalu pule ma kahi o kēlā me kēia ʻeono pule. I ka wā mua, ʻaʻole ia i uku i kekahi mea mai ka ʻeke mai no kēia mau ʻano hana. Akā e hoʻomaka ana ma ka 2017, ma muli o ka loli o kā lākou kulekele nui aʻe, ua hoʻomaka kāna mea ʻinikua e noi i kahi uku mālama kālā.
Ma lalo o ke kumu hoʻohālikelike kālā hou, uku ʻo Meg i $ 950 mai ka ʻeke no kēlā me kēia infusion o infliximab i loaʻa iā ia. ʻAʻole pili kāna hoʻoliʻiliʻi makahiki i kēia mau uku. ʻOiai inā pili ʻo ia i kāna unuhi ʻia, pono ʻo ia e uku he mau kaukani kālā i kēlā me kēia makahiki e loaʻa i kēlā mau hōʻailona.
ʻIke ʻo ia i ke kōkua maikaʻi o yoga no ka mālama ʻana i ka ʻeha a me ka hoʻomaha ʻana i ke kaumaha. ʻO ka mālama ʻana i kāna pae pae i lalo e kōkua iā ia e pale i nā lapalapa. Akā ʻo ka hele ʻana i nā papa yoga ma ke ʻano mau ke lilo i pipiʻi, keu hoʻi inā uku ʻoe no ke kipa kipa ʻana ma mua o ka hala o ka mahina.
"ʻOi aku ka liʻiliʻi inā kūʻai ʻoe i hoʻokahi mahina palena ʻole, akā ʻo kekahi o nā hopena o ka loaʻa ʻana o koʻu maʻi ʻo ia ʻaʻole wau e ʻoluʻolu e kūʻai i nā mea palena ʻole a kūʻai paha i nā mea ma mua. Ma muli o kēlā me kēia manawa aʻu i hana ai i kēlā, hōʻeha ʻia wau i ka haukapila a maʻi paha e hele a hoʻohana i nā mea aʻu i kūʻai ai. "Hana ʻo Meg i ka hapa nui o kāna yoga ma ka home, me ka hoʻohana ʻana i kahi polokalamu kelepona $ 50.
Loaʻa kālā
ʻOiai ua hiki iā ia ke hoʻopau i kāna kekelē laeoʻo, ua paʻakikī ʻo Meg i ka loaʻa a me ka mālama ʻana i kahi ʻoihana ʻoiai ke mālama nei i nā ʻōuli o ka UC a me ka ʻeha mau o ka hui pū.
"E hoʻomaka wau e noʻonoʻo e pili hou ana i ka launa pū ʻana, hoʻomaka wau e noʻonoʻo e pili ana i ka ʻimi ʻana i nā hana, nā mea āpau, a laila hoʻomaka koke koʻu olakino e hōʻole," hoʻomanaʻo ʻo Meg.
Ua lilo ʻo ia i mea hilinaʻi kālā i kāna mau mākua, kahi mea nui i kākoʻo iā ia.
Ua kōkua lākou i ka uhi ʻana i ke kumukūʻai o nā hoʻāʻo a me nā hōʻailona he nui. Ua kākoʻo lākou ma kāna ʻaoʻao ke maʻi ʻo ia e kamaʻilio pū me nā kauka. A ua hāʻawi lākou i ke kākoʻo naʻau e kōkua iā ia e kū me nā hopena i loaʻa i ka maʻi maʻi mau i kona ola.
"He paʻakikī loa ke kiʻi maoli i ka ʻoiaʻiʻo, ke kiʻi holoʻokoʻa o ka hana ʻana o kahi maʻi e like me kēia iā ʻoe a me kou ʻohana," i ʻōlelo ʻo Meg.
Akā ua hoʻomaka nā mea e nānā i luna. Ma muli o ka lawe ʻia ʻana o ka kolona a me ka kiko o Meg, ua ʻike ʻo ia i ka liʻiliʻi o nā hōʻailona GI. ʻIke ʻo ia i kahi hoʻomaikaʻi me kāna ʻeha pū.
"ʻOi aku ka maikaʻi o koʻu ola ma 99 pakeneka. Aia kēlā 1 pakeneka a kekahi e nānā nei i loko o koʻu ola i loaʻa ke olakino maikaʻi maoli a ʻaʻohe ona pilikia digestive - manaʻo paha lākou he kanaka maʻi wau. Akā mai koʻu kuanaʻike, ʻoi aku ka maikaʻi. "Ua hoʻomaka ʻo Meg e hana mai ka home ma ke ʻano he freelance mea kākau a me ka mea paʻi kiʻi, hāʻawi iā ia i ka kaohi ma kahi a me ka lōʻihi o kāna hana. Loaʻa iā ia kahi blog meaʻai, Maikaʻi ʻo Meg.
I ka hopena, lana ka manaʻo e lilo i kūʻokoʻa kālā e hoʻokele i nā kumukūʻai o ka noho ʻana me nā maʻi maʻi ma kāna iho.
"Ke inaina nei wau e kōkua koʻu mau mākua iaʻu i waho," i ʻōlelo ʻo ia, "ʻo wau he wahine 31 mau makahiki e hilinaʻi nei i ke kōkua a me ke kākoʻo kālā o kona mau mākua. Aloha nui wau i kēlā, a makemake wau e hoʻāʻo e ʻimi i kahi ala e hiki ai iaʻu ke lawe iā ia iho iaʻu iho. ”
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