„Stomia naprawdę poprawiła komfort mojego życia. Jestem osobą aktywną fizycznie, trzy razy w tygodniu robię treningi siłowe, a ostatnio zdobywam koronę gór polskich. Dzisiaj bardziej doceniam to, że żyję. Potrafię się cieszyć z małych rzeczy i szanuję nawet niewielkie gesty” – opowiada Sylwia Ratajczak, pacjentka chorująca na wrzodziejące zapalenie jelita grubego, która ze stomią żyje już od czterech lat.
Karolina Rybkowska, Forum Leczenia Ran: Jak długo ma już Pani stomię i w wyniku jakiej choroby podjęto u Pani decyzję o wyłonieniu stomii?
Sylwia Ratajczak: – Choruję na wrzodziejące zapalenie jelita grubego, a w wyniku tego schorzenia przeszłam już wiele operacji i kilkanaście razy leżałam w szpitalu. Stomię mam łącznie cztery lata, ale z przerwą. Po raz pierwszy wyłoniono ją u mnie w 2014 r. Po dwóch latach wykonano u mnie zespolenie i przez trzy lata żyłam bez stomii. W tym czasie doszło jednak do poważnych komplikacji w związku z moją chorobą, dlatego podjęłam decyzję, że chcę wrócić do stomii.
Czy podczas rekonwalescencji po wyłonieniu stomii ktoś przekazał Pani informacje, jak obsługiwać sprzęt stomijny i jak dbać o to miejsce?
– W poznańskim szpitalu, gdzie miałam dwukrotnie przeprowadzany zabieg wyłonienia stomii, trafiłam na pielęgniarkę, panią Ulę, naprawdę rewelacyjną osobę. Podczas pierwszej operacji bardzo podnosiła mnie na duchu, ponieważ byłam wówczas nieco zestresowana i przerażona tym, co mnie czeka. Pani Ula była przy mnie również podczas kolejnego zabiegu wyłonienia stomii. Była bardzo troskliwa, kiedy jeszcze leżałam w szpitalu. Wtedy też pokazała mi, w jaki sposób dobrać sprzęt stomijny. Przekazała mi również kilka próbek do domu, bym mogła wybrać najlepsze i najwygodniejsze dla mnie rozwiązanie.
Po wyjściu z placówki nadal pozostawałam w kontakcie z panią Ulą. Zgłaszałam się do niej z każdym problemem, przyjeżdżałam na konsultacje nawet bez umawiania się. Pani Ula zawsze miała czas. Podczas wizyt dokładnie doglądała mojej stomii i rany pooperacyjnej. Doradzała mi skuteczne opatrunki i preparaty.
Czy wiedza przekazana przez pielęgniarkę była przydatna? Czy dzisiaj samodzielnie zajmuje się Pani dbaniem o stomię?
– Odkąd wyszłam ze szpitala, nikt nigdy nie pomagał mi w zmianie worka stomijnego. Pierwsza zmiana była oczywiście dziwna, bałam się, czy wszystko zrobię prawidłowo. Zajmowało mi to wtedy trochę czasu. Dzisiaj natomiast worek zmieniam w 3-4 minuty. Mogę nawet powiedzieć, że bardzo lubię to robić. Dla mnie to jest dbanie o higienę, tak jak założenie świeżej bielizny. Lubię mieć wszystko dokładnie oczyszczone.
Chociaż mam ogromne wsparcie w moim mężu, to on nigdy nie widział mojej stomii. Wiem, że jest bardzo wrażliwy na takie widoki i rozumiem go.
W jaki sposób mąż wspiera Panią emocjonalnie? Czy mogła Pani na niego liczyć w czasie operacji, które musiała Pani przejść w związku z chorobą?
– Diagnozę usłyszałam 11 lat temu. Mąż był ze mną od samego początku. Przeszedł ze mną 5 operacji. Przed każdym zabiegiem przyjeżdżał do szpitala, żeby dodać mi otuchy. Czekał razem ze mną, aż zostanę zabrana na salę operacyjną. Odprowadzał mnie pod same drzwi bloku operacyjnego. Mówił, że chce, żebym to jego widziała przed zabiegiem. Rzeczywiście podnosiło mnie to na duchu, wiedziałam, że ktoś na mnie czeka. Dzisiaj również jest dla mnie ogromnym wsparciem.
Wspomniała Pani, że mąż nigdy nie widział Pani stomii. Czy w związku z tym pojawiały się u Pani kompleksy?
– Tak, zwłaszcza na początku, kiedy po raz pierwszy wyłoniono u mnie stomię. Mąż nie tylko nie widział samej stomii, ale także ukrywałam worek stomijny. Czułam w związku z tym wstyd, dlatego ukrywałam przed nim to miejsce. Ogromne kompleksy budziły we mnie wówczas sytuacje intymne. Brzuch zasłaniałam najczęściej bluzką, tak by mąż nie widział worka stomijnego. To był bardzo trudny dla mnie okres, bo mimo choroby zależało mi na tym, by być atrakcyjną dla mojego męża. Uważałam wtedy, że stomia odbiera mi coś z mojej kobiecości. Dlatego też od momentu wyłonienia stomii bardzo zmienił się również mój styl ubierania. Kiedyś uwielbiałam chodzić w spodniach i tak naprawdę nie przywiązywałam tak dużej wagi do tego, co na siebie wkładam. Dzisiaj częściej wybieram zwiewne i kobiece sukienki. Wydaje mi się, że trochę w ten sposób chcę ukryć stomię, ale też trochę pokazać, że mimo choroby jestem przecież kobietą i mogę wyglądać ładnie.
Czy obecnie również zmaga się Pani z tymi kompleksami? Czy z czasem udało się je pokonać?
– Dzisiaj nie mam już takich problemów, jeżeli chodzi o sytuacje intymne. Nie przejmuję się tym, że mąż widzi worek stomijny. Dotarło do mnie, że stomia ratuje mi życie. Dzisiaj wiem, że mimo choroby jestem kobietą, a stomia nie odbiera mi atrakcyjności. W walce z tym kompleksem bardzo pomógł mi mój mąż.
Oczywiście nadal zdarzają się okresy, kiedy psychicznie czuję się gorzej w związku z moją chorobą. Wychodzę jednak z założenia, że wszystko trzeba sobie poukładać w głowie. Każdy z nas ma lepsze i gorsze dni i to jest normalne. Ja na co dzień czuję się dobrze sama ze sobą. Zdarza mi się patrzeć w lustro przy zmianie worka stomijnego. Czasem jeszcze nie dociera do mnie, że mam stomię. Myślę jednak, że będę ją miała już do końca życia. Przy mojej chorobie stomia jest najlepszym rozwiązaniem.
Czy dzisiaj stomia w jakiś sposób wpływa na Pani życie?
– Stomia zupełnie w niczym mi nie przeszkadza. Jestem osobą aktywną fizycznie. Trzy razy w tygodniu jestem na siłowni i wykonuję treningi siłowe. Nikt nie przypuszcza nawet, że mam stomię. Osoby, które to odkryły, były naprawdę zszokowane. Chodzę również po górach, zdobywam koronę gór polski. Jestem idealnym dowodem na to, że ze stomią można żyć normalnie, a nawet jeszcze lepiej. Stomia ratuje życie.
Co zmieniło się w Pani życiu po przejściu tylu operacji i wyłonieniu stomii?
– Myślę, że stałam się bardziej wrażliwa na innych ludzi i ich choroby. Zaczęłam też inaczej patrzeć na świat i stałam się dużo silniejsza psychicznie.
Pierwsze pójście do szpitala wiązało się dla mnie z rozpaczą, strachem i ogromnym stresem. Bardzo bałam się szpitali i lekarzy, tym bardziej operacji. Od tamtej pory w szpitalu leżałam już 12 razy. Mój mąż śmieje się, że dziś jest to dla mnie rutyna – po prostu pakuję się, jadę, przechodzę operację i wracam. Myślę, że choroba mnie wytrenowała, dała dużo siły i zmieniła moją psychikę.
Czy choroba, pobyty w szpitalu i operacje zmieniły również Pani podejście do życia? Czy bardziej je dzisiaj Pani docenia?
– Tak, bardziej doceniam to, że żyję. Potrafię się cieszyć z małych rzeczy i szanuję nawet niewielkie gesty. Jestem też bardzo wrażliwa na cierpienie ludzi. Kiedyś nie dostrzegałam tego, jak inni cierpią, jak wiele osób jest w trudnej sytuacji, o wiele gorszej niż moja. Byłam zdrowa, więc zupełnie mnie to nie interesowało. Teraz jest zupełnie inaczej. Staram się podnosić na duchu tych, których czeka wyłonienie stomii i są przerażeni, motywować ich do tego, by nie poddawali się i myśleli pozytywnie.
Cieszę się, że dzisiaj są grupy wsparcia dla stomików na Facebooku, ponieważ są one bardzo pomocne. Kiedy ja zaczynałam chorować, nie było tych grup. Jedynie fora internetowe. Czerpałam stamtąd bardzo dużo wiedzy i poznałam wielu wspaniałych ludzi ze stomią. Zawarłam piękne przyjaźnie, które trwają do dzisiaj. Utrzymujemy ze sobą kontakt i spotykamy się całymi rodzinami.
Jakie były Pani odczucia, kiedy po raz pierwszy usłyszała Pani o konieczności wyłonienia stomii?
– Stomia kojarzyła mi się wtedy z czymś okropnym, obrzydliwym, śmierdzącym. Zastanawiałam się, jak w ogóle jest możliwe życie z kawałkiem wyłonionego jelita na brzuchu.
Zdecydowałam się jednak na stomię, ponieważ poinformowano mnie, że to rozwiązanie tymczasowe. Po dwóch latach zostałam zespolona i byłam bardzo szczęśliwa, gdy odzyskałam „normalne” życie. Choroba jednak zaczęła się komplikować. Ponownie trafiłam do szpitala i po dwóch tygodniach badań lekarze poinformowali mnie o konieczności ponownej stomii. Jak ja się wtedy ucieszyłam! Chciałam wrócić do stomii, ponieważ jest to dla mnie bardzo wygodne rozwiązanie. Mogłam wreszcie uwolnić się od trudnych komplikacji w związku z moją chorobą.
Jak dzisiaj myśli Pani o stomii?
– Dzisiaj moje myślenie odwróciło się o 180 stopni! Staram się uświadamiać ludzi, że stomia wcale nie jest czymś niehigienicznym. Nie ma brzydkiego zapachu. Stomia naprawdę poprawiła jakość mojego życia. Przed jej wyłonieniem miałam ogromne problemy i opory psychiczne, żeby iść do pracy czy w ogóle wyjść z domu. Myślałam tylko o tym, jak często będę musiała korzystać z toalety. Dzisiaj śmieję się, że toaletę mam przy sobie.
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