Ke maʻi mau nei kāu keiki liʻiliʻi? Ke emi nei kona kaumaha me ka ʻike ʻole, ʻoiai ma hope o ka inu ʻana i ka waiū a i ʻole ka ʻai ʻana? ʻAʻole anei ʻo ia e piʻi iki ke kaumaha? Ma ke ʻano he makua, he mea maʻamau ke makaʻu nui a hopohopo ke ʻike ʻoe i nā mea e like me kēia. I kekahi manawa, aia paha kekahi maʻi ma hope o kēia mau hōʻailona i lohe ʻole ʻia e mākou. I kēia lā e kamaʻilio mākou e pili ana i kekahi o ia ʻano maʻi, ʻo "Short Bowel Syndrome".
He aha ka Short Bowel Syndrome (SBS)?
I ka ʻōlelo maʻalahi, ʻo ka Short Bowel Syndrome (SBS) kahi kūlana i hiki ʻole ai i ke kino o kāu keiki ke omo i nā meaʻai a me nā wai kūpono. ʻO kēia no ka mea ua nalowale kekahi hapa o ka ʻōpū liʻiliʻi o ke keiki a ʻaʻole paha e hana pono. ʻOi aku ka pololei, ʻaʻole lawa ka lōʻihi o ka ʻōpū. Hiki ke loaʻa kēia kūlana i ka wā hānau, a i ʻole hiki ke hana ma hope o ka wehe ʻia ʻana o kahi hapa nui o ka ʻōpū liʻiliʻi ma muli o kekahi kūlana olakino ʻē aʻe.
No ka hoʻomaopopo ʻana i kēia, e nānā mua kākou i ka mea e hana ʻia ana i loko o ko kākou ʻōpū liʻiliʻi.
Ke kuleana o ko kākou ʻōpū liʻiliʻi
E noʻonoʻo i ka ʻōpū liʻiliʻi e like me kahi 'laina hana' lōʻihi i loko o kahi hale hana. ʻO ka meaʻai a mākou e ʻai ai ua hoʻoheheʻe hapa ʻia i loko o ka ʻōpū a komo i loko o ka ʻōpū liʻiliʻi. A laila, i kona hele ʻana ma kēia ʻōpū lōʻihi, ʻo nā mea āpau e pono ai ke kino i loko o kēlā meaʻai - ʻo ia hoʻi, ka protein, nā carbohydrates (starch a me ke kō), ka momona, nā huaora, nā minelala e like me ka hao, ka calcium - ua komo i loko o ke kino. Hoʻokuʻu ʻia ke koena o ka ʻōpala ma o ka ʻōpū nui ma ke ʻano he feces.
ʻEkolu mau ʻāpana nui o ko kākou ʻōpū liʻiliʻi:
- Duodenum: ʻO ka ʻāpana pōkole loa ma hope o ka ʻōpū.
- Jejunum: ʻĀpana waena.
- ʻIleum: ʻO ka ʻāpana lōʻihi loa o ka ʻōpū nui.
I ke ʻano o SBS, ʻaʻole lawa ka lōʻihi o kēia 'laina hana'. E noʻonoʻo, he aha ka mea e hana ʻia inā e hoʻohana ʻia kahi alanui kilomika ka lōʻihi e omo i nā meaʻai, a hoʻopōkole koke ʻia kēlā alanui? E holo wikiwiki ke kaʻa i kapa ʻia ʻo ka meaʻai ma kēlā alanui pōkole a ʻaʻohe manawa e hoʻokuʻu i nā ukana āpau (nā meaʻai) i loko. Hana like ka mea ma SBS. No ka mea, he pōkole ka ʻōpū, haʻalele ka meaʻai i ke kino ma mua o ka ʻeli pono ʻia ʻana a omo ʻia nā meaʻai e ke kino. He kūlana koʻikoʻi kēia e hiki ai ke hoʻopilikia i ke ola o ke keiki inā ʻaʻole mālama ʻia.
Pehea ʻoe e ʻike ai inā loaʻa i kahi keiki ʻo SBS? He aha nā hōʻailona?
Hiki i kekahi keiki me SBS ke ʻike i hoʻokahi a ʻoi aku paha o kēia mau hōʻailona. ʻO ka hōʻailona maʻamau, ʻoi aku hoʻi i nā pēpē a me nā kamaliʻi liʻiliʻi, ʻo ia ka maʻi kahe wai.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Ka maʻi pākī | Ka noho pinepine a wai. ʻO kēia ka hōʻailona nui a maʻamau. |
| Pehu ʻana | Manaʻo o ka piha i loko o ka ʻōpū, ka pehu ʻana. |
| Kinoea nui loa | Ka liki pinepine ʻana o ka ea. |
| Nā ʻōpala ʻala ikaika | He ʻala ikaika a pilau hoʻi mai ka noho. |
| Luhi | Manaʻo mau ke keiki i ka luhi a me ka hiamoe. |
| ulu maikaʻi ʻole | ʻAʻole e piʻi ke kaumaha a i ʻole ke kiʻekiʻe e like me ke kūpono no ka makahiki. |
No ke aha i loaʻa ai i kahi keiki ka Short Bowel Syndrome?
ʻElua mau ʻano kumu nui no kēia.
1. Nā kumu hānau: Hiki ke hānau ʻia kekahi mau keiki me kahi ʻōpū liʻiliʻi pōkole. A i ʻole e nalowale ana kekahi ʻāpana o ka ʻōpū, a i ʻole ʻaʻole paha i ulu piha ka ʻōpū i ka wā e ulu ana i loko o ka ʻōpū o ka makuahine. Ua kapa ʻia kēia maʻi ʻo `(Intestinal Atresia)`.
2. Ma ke ʻano he hopena ʻaoʻao o ke ʻoki kino: Pono kekahi mau keiki e wehe ʻia kekahi hapa o ko lākou ʻōpū liʻiliʻi ma ke ʻoki kino ma muli o nā kūlana olakino ʻē aʻe. ʻO kekahi o nā kumu maʻamau no kēia ʻano ʻoki kino:
- ʻO ka necrotizing enterocolitis: He maʻi koʻikoʻi, ʻoi aku hoʻi i nā pēpē hānau mua ʻia, kahi e make ai nā ʻāpana o ka ʻōpū ma muli o ka emi ʻana o ke kahe koko.
- Gastroschisis: ʻO ke ʻano kahi e puka ai nā ʻōpū ma waho o ke kino i ka wā e ulu ana ke pēpē i loko o ka ʻōpū.
- Volvulus: ʻO kahi kūlana kahi e wili ai nā ʻōpū a nalowale ke kahe o ke koko.
- ʻO ka maʻi o Crohn:He ʻano mumū lōʻihi o ka ʻōnaehana hoʻoheheʻe ʻana.
- Intussusception: ʻO ke ʻano kahi i paʻa ai kekahi ʻāpana o ka ʻōpū i loko o kekahi ʻāpana ʻē aʻe.
I kēia kūlana, wehe nā kauka i ka ʻāpana i hōʻino ʻia o ka ʻōpū e hoʻopakele i ke ola o ke keiki. Hana ʻia ka SBS ma ke ʻano he hopena ʻaoʻao.
He aha nā pilikia e hiki ke loaʻa mai ka SBS?
ʻAʻole he maʻi maʻalahi ka SBS. Inā ʻaʻole mālama pono ʻia, hiki i ke keiki ke loaʻa i nā pilikia like ʻole.
- Ka maloʻo ʻana: Hiki i ke kino ke mālama mau i ka wai no ka mea ʻaʻole hiki iā ia ke omo i ka nui o ka wai e pono ai.
- ʻAi ʻole: Ka pohō kaumaha a me ka ulu ʻana o ka mea kanu ma muli o ka nele o ka meaʻai e pono ai.
- Ka nele o nā wikamina a me nā minelala: Ka nele o nā wikamina koʻikoʻi (A, D, E, K, B12) a me nā minelala (calcium, magnesium, zinc) no ke kino.
- ʻEha nui o ka diaper: ʻO nā ʻōpala waikawa pinepine e hiki ke hoʻolilo i ka ʻili ma kahi diaper i ʻulaʻula nui a ʻeha.
- Maʻi ʻāʻī: Hiki ke hoʻopilikia ʻia ke akepaʻa, ʻoiai inā loaʻa iā ʻoe ka meaʻai parenteral (TPN) no ka manawa lōʻihi.
- Nā pōhaku puʻupaʻa: Ma muli o ke kaulike ʻole o ka omo ʻana o nā mea e like me ka calcium.
- Ka ulu nui ʻana o ka bacteria ma ka ʻōpū liʻiliʻi: ʻO ka hana ʻōpū i hōʻino ʻia e hiki ke alakaʻi i ka ulu nui ʻana o nā bacteria ʻino.
No laila, inā loaʻa i kāu keiki nā hōʻailona o SBS, ʻoi aku hoʻi ma hope o ke ʻoki ʻana i ka ʻōpū, he mea nui loa ia e ʻike koke i kāu kauka .
He aha nā lāʻau lapaʻau no SBS?
He hana hui ka mālama ʻana i kahi keiki me SBS. He nui ka poʻe, me nā kauka keiki, nā kauka ʻokiʻoki, a me nā meaʻai, e hana pū ana e hoʻomohala i ka hoʻolālā lapaʻau maikaʻi loa no kāu keiki. ʻO ka pahuhopu nui o ka mālama ʻana, ʻo ia ke kāohi i nā hōʻailona me ka hāʻawi ʻana i ke keiki i ka meaʻai e pono ai.
1. Nā Hoʻololi Meaʻai
ʻO kēia ka ʻāpana koʻikoʻi loa o ka lāʻau lapaʻau.
- ʻO ka ʻai ʻana i ka ʻōpū (TPN): Ma hope o ke ʻoki ʻana i ka ʻōpū a i ʻole ke hiki ʻole i nā ʻōpū ke omo i nā meaʻai, hāʻawi ʻia nā meaʻai a pau e pono ai ke keiki (protein, momona, carbohydrates, vitamins, a me nā minelala) i ke keiki ma o kahi wai kūikawā, e like me ka saline, ma o kahi aa koko. Hoʻopau loa kēia i ka ʻōnaehana hoʻoheheʻe a hoʻohui pololei i ka meaʻai i ke koko. He lāʻau lapaʻau ola kēia no ke keiki.
- ʻAi ʻai ʻōpū / Hānai ʻana i ka paipu:Inā hana iki nā ʻōpū o ke keiki, hāʻawi ʻia nā meaʻai wai kūikawā ma o kahi paipu i kau ʻia ma ka ihu i loko o ka ʻōpū a i ʻole ma o kahi paipu i hoʻopili pololei ʻia i ka ʻōpū. Hiki i kēia ke hāʻawi i ke keiki i ka meaʻai hou aʻe ma waho aʻe o ka meaʻai a lākou e ʻai ai ma ka waha.
- Nā loli i ka ʻai: Ke hoʻomaka mālie nei ka pēpē e ʻai ma ka waha, e hāʻawi ke kauka a me ka meaʻai meaʻai i kahi hoʻolālā ʻai kūikawā. I loko,
- Ma kahi liʻiliʻi, e noi lākou iā ʻoe e hānai iā lākou i nā manawa he nui i ka lā.
- ʻŌlelo ʻia e hōʻemi i nā meaʻai kiʻekiʻe i ka momona, ke kō, a me ka fiber.
- Ua ʻōlelo ʻia e hāʻawi i nā meaʻai waiwai i ka protein a me nā carbohydrates.
- Manaʻo ʻia e hāʻawi i nā huaora a me nā minelala e pono ai ma ke ʻano he mea hoʻohui.
2. Nā lāʻau lapaʻau
Hoʻohana ʻia nā lāʻau lapaʻau like ʻole e kāohi i nā hōʻailona a hoʻomaikaʻi i ka hoʻopili ʻana i ka meaʻai.
- Nā lāʻau lapaʻau e hoʻemi i ka waikawa o ka ʻōpū ('Nā mea hoʻopaʻa pump Proton').
- Hoʻopilikia nā lāʻau antibiotic i ka ulu ʻana o ka bacteria i loko o ka ʻōpū.
- Nā lāʻau lapaʻau e hōʻemi ai i ka maʻi pākī a hoʻolohi i ka wikiwiki o ka neʻe ʻana o ka meaʻai ma o nā ʻōpū.
- Nā ʻano hormones e hoʻomaikaʻi ai i ka omo ʻana o nā meaʻai.
3. ʻoki kino
I kekahi mau hihia koʻikoʻi, pono paha ke ʻoki kino hou aʻe e hoʻomaikaʻi i ka hana o nā ʻōpū o ke keiki. Eia kekahi laʻana, aia nā kaʻina hana hoʻolōʻihi ʻōpū. I nā hihia koʻikoʻi loa, kahi ʻaʻohe lāʻau ʻē aʻe e pono ai, pono paha kahi hoʻoili ʻōpū.
ʻO ka manaʻolana maikaʻi o ka hoʻololi ʻana o ka ʻōpū
ʻO kēia ka manaʻolana nui loa no nā keiki a me nā mākua me SBS. He mea kupaianaha ko mākou kino. Ma hope o ka wehe ʻia ʻana o kahi ʻāpana o ka ʻōpū, hoʻomaka ke koena o ka ʻōpū e loli i ka hala ʻana o ka manawa. Ua kapa ʻia kēia ʻo 'Intestinal Adaptation'.
Eia ka mea e hana ʻia:
- Hoʻonui ʻia ka ʻili o ka paia o loko o ka ʻōpū i koe.
- ʻO nā ʻāpana liʻiliʻi e like me ka manamana lima (villi) e omo ana i nā meaola e hoʻolōʻihi a mānoanoa.
- Hoʻonui ʻia ke anawaena o ka ʻōpū.
- Hoʻolohi ka wikiwiki o ka neʻe ʻana o ka meaʻai, e hāʻawi ana i ka manawa hou aʻe no ka omo ʻana i nā meaola.
Ma muli o kēia kaʻina hana hoʻololi, hiki i nā keiki he nui ke neʻe mālie mai ka meaʻai parenteral (TPN) i ka hānai waha. Loaʻa nā lāʻau lapaʻau hou, e like me ka teduglutide, i hiki ke hoʻolalelale i kēia hoʻololi.
He huakaʻi paʻakikī ʻo SBS. Akā me ka mālama lapaʻau kūpono, ka mālama pono ʻana i ka meaʻai, a me ke aloha a me ka hoʻolaʻa ʻana o nā mākua, hiki i kēia mau keiki ke ola i nā ola maikaʻi a hauʻoli. He mea nui loa ia e hoʻomau i ka launa pū ʻana me kāu kauka a me ka hui lapaʻau a hahai i kā lākou ʻōlelo aʻo.
Leka Lawe-Home
- ʻO ka Short Bowel Syndrome (SBS) kahi kūlana i pōkole loa ai nā ʻōpū o ke keiki no ka omo pono ʻana i nā meaola.
- ʻO ka maʻi pākī pinepine a me ka ulu maikaʻi ʻole (ʻaʻole e piʻi ke kaumaha) nā hōʻailona nui.
- Hiki ke loaʻa kēia i ka wā hānau a i ʻole ma hope o ke ʻoki ʻana ma muli o kekahi maʻi ʻē aʻe.
- ʻO ke kumu nui o ka mālama ʻana, ʻo ia ka hoʻokele meaʻai, ʻo ia hoʻi ka TPN (meaʻai intravenous) a me ka hānai ʻana i ka paipu.
- I ka hala ʻana o ka manawa, hiki ke hoʻomaikaʻi ke kūlana i ka wā e hoʻomaʻamaʻa ai ke koena o ka ʻōpū o ke keiki.
- Inā loaʻa i kāu keiki kēia mau hōʻailona, mai makaʻu a hoʻokaʻulua paha i ka ʻike ʻana i kahi kauka keiki. Hiki i ka lāʻau kūpono ke hāʻawi i kāu keiki i kahi ola maikaʻi aʻe.











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