Emanuel fikk stomi av Crohns sykdom

Emanuel fikk stomi av Crohns sykdom

Emanuel Persson ville absolutt ikke ha stomipose. Men med Crohns sykdom ble han stadig verre, og til slutt så han ikke noen annen utvei enn å godta en stomioperasjon. Det er en avgjørelse han ikke har angret.

– Om jeg fikk spørsmålet igjen ville jeg tatt samme avgjørelse en gang til, selv om jeg nå kjenner til alle komplikasjoner som man kan få. Det er en veldig stor forskjell på livet mitt før og etter operasjonen. Nå kan jeg gjøre hva jeg vil og reise hvor jeg vil uten å hele tiden lure på hvor nærmeste toalett finnes.

Emanuel Persson, 24, ble trolig født med Crohns sykom, en inflammatorisk tarmsykdom (IBD) som oftest bryter ut i voksen alder. Da han var to år tok foreldrene hans med ham til legen fordi han var blek og ikke ville spise. Legene trodde at han var allergisk mot melkeprotein, og rådet foreldrene til å kjøpe soyaprodukter. Men det ble ikke bedre. Da mistenkte legene at det dreide seg om ulcerøs kolitt, en annen inflammatorisk tarmsykdom med lignende symptomer.

– De trodde ikke at man kunne ha Crohns ved så tidlig alder.

Men til slutt ble diagnosen likevel bekreftet. For hvert år som gikk ble symptomene verre, med magesmerter og akutte diareer. På spørsmålet om det fantes en tid der han ikke slet med magesmerter før stomioperasjonen, svarer Emanuel:

– Da jeg var ni. Da gjennomførte jeg en seks ukers tarmhvile for at tarmen skulle få gro, og fikk isteden næring gjennom en sonde i nesen. I den perioden følte jeg meg bra.

Men bortsett fra de seks ukene måtte Emanuel bli vant med magekramper hver gang han spiste selv de minste mengder mat. Tarmpassasjen var like trang som et sugerør, og omtrent alle måltider gjorde at han fikk tarmslyng. Og når som helst måtte han være klar for å løpe til toalettet.

– Jeg var ikke mye utendørs om jeg ikke absolutt måtte, og jeg satt mest inne og spilte data. Jeg hadde venner, men kunne ikke gå ut for å finne på noe med de. Jeg tilpasset meg etter sykdommen, og ble litt av en ensom ulv.


Var imot stomioperasjon


Deler av den syke tarmen ble operert bort, men det ble fortsatt ikke bedre. Før tarmoperasjon nummer to, fikk Emanuel Persson spørsmål om han kunne tenke seg stomi, der tarmen tømmes i en pose på magen i stedet for på vanlig måte.

– Jeg hadde vært veldig imot stomi i alle år, man er jo redd for alt man ikke kjenner til. Men da jeg fikk spørsmålet igjen aksepterte jeg det bare. Det hørtes ut som den eneste løsningen.

En dag i løpet av det andre året på videregående ble han operert og fikk en ileostomi på tynntarmen.

– Siden da har jeg følt meg ganske bra, jeg ble jo kvitt den syke tarmen min. Men jeg har fortsatt en del febertopper iblant, som følge av en pågående infeksjon i kroppen.



Og alt har ikke vært bare lett selv om Emanuel har fått en stomi. Det er mange ting som han ønsker at noen hadde fortalt ham før operasjonen; at man kan få magebrokk, at stomiposen kan ese og bli som en ballong om man tygger for mye tyggegummi eller drikker kullsyreholdig drikke, eller at stomiposen kan gi lyd fra seg.

– Iblant kan den gi lyd fra seg når jeg sitter i en stor folkesamling. Ettersom jeg ikke har noen ringmuskel, kan jeg ikke kontrollere når det kommer gass og luft. Men jeg har blitt vant til det, nå forklarer jeg bare at det var min stomi som ga lyd fra seg.

Han prøver også å unngå å spise for store porsjoner om kveldene, ellers kan det hende at posen lekker mens han sover. Han vitser om hvor mye penger han bruker på sengetøy.

– Men om man står overfor valget å gjennomføre en stomioperasjon eller ikke, så må man veie fordelene mot bakdelene. Selvsagt er det mye som er slitsomt, men man blir vant til det. Og vil man ha et sosialt liv, da er stomi den beste løsningen.

Emanuels sykdom har gjort at han har gått glipp av mye på skolen, men det er han på vei til å ta igjen nå. Nå tar han opp karakterene sine fra folkehøyskolen, og tenker å jobbe med data i fremtiden.

– Jeg vet at jeg vil programmere i hvert fall. Jeg synes det er morsomt å skape ting på egen hånd. Om alt går som det skal, har jeg kanskje den programmererjobben om tre år. Jeg gleder meg.

FOTO: Denise Rexhall

Publisert: 2016-10-26

Forfatter: Anna-Cajsa Torkelsson

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