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„Od 3 miesięcy oglądam ranę i nie widzę poprawy. Bardzo chciałabym, żeby to wszystko się już skończyło” – historia pacjentki z chorobą Leśniowskiego-Crohna

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„Przez moją chorobę i ranę na brzuchu wiele miesięcy spędziłam w łóżku. Byłam w bardzo złym stanie psychicznym, straciłam wszystko. Świat mi się zawalił. Dzięki wsparciu rodziny i przyjaciół, a przede wszystkim pomocy specjalistów wyszłam na prostą” – opowiada Alicja Get, pacjentka z otwartą raną na brzuchu i wyłonioną stomią.

Karolina Rybkowska, Forum Leczenia Ran: Na początek chciałabym zapytać, w jaki sposób doszło do powstania rany na Pani brzuchu.

Alicja Get: – Od 16 lat choruję na chorobę Leśniowskiego-Crohna. W związku z powikłaniami mojego schorzenia już kilkakrotnie trafiłam na oddział ratunkowy. Kiedy przebywałam w szpitalu, lekarze podjęli decyzję o wyłonieniu stomii. W związku z tym pod pępkiem miałam podłużną ranę, która dwukrotnie się rozeszła. Lekarze zdecydowali, że nie będzie ponownie szyta, dlatego od trzech miesięcy rana na brzuchu jest otwarta. Wdrożono mi antybiotykoterapię oraz terapię podciśnieniową, później zostałam wypisana do domu z zaleceniem dalszego leczenia.

Czy pojawienie się rany utrudniło Pani codzienne życie?

– Tak, wykonywanie wielu codziennych czynności jest dla mnie dzisiaj utrudnione. Ostatnio zaczęłam się trochę lepiej czuć i postanowiłam wstać z łóżka. Radzę sobie z podstawowymi obowiązkami domowymi, natomiast nadal muszę być bardzo ostrożna. Nie mogę się schylać, podnosić ciężkich rzeczy i za dużo chodzić, dlatego w wielu kwestiach potrzebuję jeszcze pomocy. Marzę o tym, żeby wrócić już do normalnego, samodzielnego życia, ale moje ciało mi jeszcze na to nie pozwala.

Jak zatem wygląda Pani życie z raną? Z czego musiała Pani zrezygnować?

– Jest mi bardzo trudno. Moja choroba powoduje, że rany trudniej się goją. Nie przypuszczałam jednak, że aż tak bardzo się to wydłuży. Codzienne zmiany opatrunków są męczące, ponieważ rana jest dosyć rozległa i zajmuje to dużo czasu. Leczenie trwa już 3 miesiące i do dzisiaj nie widzę efektów. Poza tym wokół stomii zaczęły powstawać inne rany. Bardzo chciałabym, żeby to wszystko się już skończyło, żeby mieć to za sobą. Ból jest przeraźliwy i trudny do zniesienia.

Właściwie od roku jestem już przykuta do łóżka, jak nie w szpitalu, to teraz w domu. Bardzo dobija mnie to psychicznie. Musiałam całkowicie zmienić swoje życie, zrezygnowałam z pracy i spotkań ze znajomymi. Odłożyłam na bok swoje marzenia i zmieniłam priorytety. Świat mi się zawalił.

Jak radzi sobie Pani emocjonalnie?

– Wszystko, co przechodziłam w związku z moją chorobą, skumulowało się i poważnie odbiło się na moim zdrowiu psychicznym. Po wyjściu ze szpitala nie radziłam sobie z tym, że jestem „uwięziona” w domu. Byłam zła, że rana nie pozwala mi na wykonanie nawet drobnych czynności. Później pojawiły się stres i frustracja, ponieważ rana zupełnie nie chciała się goić. Ciągły ból również był trudny do zniesienia. Były momenty, że nie miałam już na to wszystko siły. Bardzo bałam się o swoje zdrowie.

W czasie rekonwalescencji straciłam też bardzo bliską mi osobę, więc było mi naprawdę bardzo trudno. Zostałam ze wszystkim sama, czułam się bardzo samotna i popadłam w depresję. Moje problemy psychiczne zaczęły narastać i stały się bardzo poważne. Miałam silne wahania nastrojów, a w pewnym momencie stres tak bardzo się skumulował, że doświadczyłam problemów z mówieniem – zaczęłam się jąkać. Bardzo się wtedy wystraszyłam i uznałam, że nie poradzę sobie z tym wszystkim sama. Postanowiłam skorzystać z pomocy psychologa i psychoterapeuty farmakologicznego.

Panią Anię, psycholożkę, poznałam w szpitalu, gdzie leżałam w czasie pandemii, kiedy odwiedziny bliskich były zabronione. Cieszę się, że pani Ania była wówczas ze mną. Bardzo pomogła mi uporać się z problemami psychicznymi. Dzięki jej wsparciu lepiej zniosłam też operację. Ponadto mam z nią bardzo dobry kontakt i zawsze, kiedy tego potrzebuję, mogę liczyć na rozmowę z nią. Dzięki niej wyszłam na prostą i zupełnie inaczej myślę dzisiaj o swoim życiu.

Czy ma Pani u boku kogoś bliskiego, kto Panią wspiera?

– Tak, na co dzień pomaga mi moja rodzina oraz przyjaciele. Nie tylko wspierają mnie w codziennych obowiązkach domowych, ale także podnoszą na duchu. Mam wokół siebie cudowne osoby, które troszczą i martwią się o mnie. Myślę, że moja choroba też nieco zweryfikowała otaczających mnie ludzi. Dzisiaj wiem, że są przy mnie prawdziwi przyjaciele i najbliższa rodzina, na których mogę liczyć w każdej sytuacji.

Czy Pani przyjaciele i rodzina pomagają również w opiece nad ranami?

– Zawsze byłam osobą bardzo samodzielną i zdeterminowaną, dlatego zależało mi na tym, żebym mogła zajmować się raną sama. Będąc jeszcze w szpitalu, przeszłam szkolenia z zakresu pielęgnacji stomii i obsługi sprzętu stomijnego, a także z żywienia pozajelitowego. Dzięki temu potrafię zająć się raną samodzielnie i nie muszę prosić nikogo o pomoc.

Czy korzysta Pani z opieki profesjonalisty, np. pielęgniarki?

– Tak, zależało mi, by ktoś nadzorował proces gojenia się mojej rany. Przypadkiem trafiłam na pielęgniarkę stomijną – panią Alicję. Bardzo pomogła mi w doborze opatrunków, produktów pielęgnacyjnych do rany czy odpowiednich zabiegów, ale także wytłumaczyła mi proces gojenia się rany. Pani Alicja nie jest z mojej miejscowości, dlatego konsultujemy się głównie telefonicznie. Wysyłam jej również zdjęcia mojej rany, żeby mogła ocenić proces leczenia. Pani Alicja jest naprawdę bardzo doświadczoną pielęgniarką stomijną, ma ogromną wiedzę. Zanim do niej trafiłam, posiłkowałam się informacjami, które znalazłam w internecie. Dzisiaj wiem, że lepiej skorzystać ze wsparcia profesjonalisty.

Jak dziś podchodzi Pani do problemów, o których rozmawiałyśmy?

– Dzisiaj jest zupełnie inaczej. Zaczynam wierzyć w to, że te problemy kiedyś odejdą. Mimo tego, że sytuacja nadal pozostaje niezmieniona – muszę pozostawać w domu i nadal leczę ranę – to zupełnie zmieniło się moje myślenie i nabrałam determinacji do wyleczenia rany. Zaczęłam mieć nadzieję, że w końcu stanę na nogi i wyjdę z domu. Jestem nastawiona bardzo optymistycznie.

Wydaje mi się, że sama nie poradziłabym sobie z tymi problemami, gdybym nie miała wsparcia rodziny, przyjaciół i pomocy tak świetnych specjalistów. Jestem również bardzo aktywna na grupach wsparcia dla stomików na Facebooku. Uważam, że osoby, które doświadczyły tego samego, są w stanie zrozumieć wzajemnie swoje problemy. Cieszę się, że mogę się tam otwarcie dzielić swoimi doświadczeniami.

 

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