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    My stoma story


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    Hrvatski – Naše priče

    January 24th, exactly 10 years ago, a new chapter of my life has begun. That’s the day I will never forget. It is the day after I took control over my life and the day when a new opportunity to live life to the fullest was born, after too many years of very aggressive and severe ulcerative colitis. And this is my stoma story.

    When I first came to the hospital to discuss my surgery with the team of doctors, I was scared to death and not convinced that the ostomy was the best choice for me. The fear I was struggling with was the fear of the unknown and my mind kept asking the same question…whenever I’ve closed my eyes the words “what if” were flashing in front of me. The scariest “what if” was the “what if I don’t wake up?” which was the most reasonable question because at that time my oldest son was my only kid and he was only 5 years old. The second question I kept asking myself was “Am I gonna be able to have a normal life with an ostomy or my ileostomy is going to bury me alive?”

    The fact is that at that time I knew very little about life with an ostomy and I was fighting against it like a leaf against the wind. I have refused more than once to go for surgery and have lived surrounded by the illusion that someday my Ulcerative Colitis will go into remission and that I will manage to make it without the surgery and the ostomy.

    Years were passing and I was getting sicker and sicker with frequent hospitalizations. My blood tests were really bad, constantly showing my illness getting out of control. I was no longer responding to any medications available at the time for IBD. My life was in chaos. My husband and my oldest son were suffering along with me. My son grew up with a sick mother that was sick 24/7 for 10 years and the mother who has had lost her social life, friends… A mother who was unable to be a mother,… and all for nothing, because my health condition was not getting any better.

    After 10 years of severe UC without a single day of remission, I have finally seen the light at the end of a tunnel. The biological therapy (Remicade) was finally available for me. I’ve started with a lot of different types of tests, blood works,… and had the biopsy of my inflamed colon.

    I was already imagining my life getting better, more children, a better quality of life, fewer hospitalizations, going places without having a fear of not getting to the toilet in time, fewer blood works, more time with my family…In a word, I was very optimistic about the Remicade.

    Almost one month after the biopsy, I’ve received a phone call from my doctor’s office. The biopsy came back positive for the adenocarcinoma. Another punch in the face, UC won again for the hundredth time, and I was defeated and powerless to fight back.

    At that time, I thought that life was so unfair to me just because I was not accepting ostomy as a solution. It took a while for me to think about everything and to decide to go for an ileostomy. That was a very hard period for me and my family and we were all suffering together. In the beginning, all I did was ask myself “why? wasn’t severe and very aggressive UC enough for me to deal with?!”…

    And then, something suddenly happened. Something magical, something supernatural happened to me overnight. I felt that I needed to find my faith; my inner strength and that I needed to go to Međugorje for a confession. My strength came from my God and all of a sudden every fear disappeared. I was finally ready to fight back, to face my fears, and to grab a new life and to live it.

    I went through my surgery, my recovery, and 6 cycles of chemotherapy 500 km away from my home and I did everything with a smile. My faith kept pushing me forward. I’ve accepted my ileostomy from the beginning as a part of me that saved my life and allowed me to live and to do everything I was unable with UC.

    I had a successful pregnancy, with my second child, and thanks to an ileostomy now I have two sons and the opportunity for more children and every single thing that life would give me…which I didn`t have with the disease that was sucking the life out of me.

    It is not that I am immune to the pain nor that I don`t experience troubles with my Ileostomy. I do have blockages from time to time, I also fight with leakages, a bag filled with air, diarrhea, soared skin around the stoma, itching, dehydration, low energy, and even with extraintestinal complications… but they are all manageable problems and way easier to treat now that I have my ileostomy. Over time I have learned how to help myself and how to deal with everyday life with a stoma and that`s something I would recommend to everyone.

    Now, after 10 years of life with my ostomy, I feel so sorry for having fought against the most powerful weapon I have ever had to fight back IBD. My ileostomy! But I guess it was supposed to be that way. I had to learn in the hardest possible way…

    I`m a different person from who I was 20 years ago, at the very beginning of my fight with Ulcerative Colitis, a disease that almost stole my life, my identity, and every single thing in my life worth fighting for.

    I have a new life, not pain-free, but I live with much greater quality than it was with UC. I`m unstoppable and there is nothing that could stop me to enjoy life and I am forever grateful to God and my ileostomy for that.

    24th January 2012 has every right to be called my new day of birth. That is the date when my stoma was created and with it a new opportunity for all the wonderful things in life that came with it. #stomasavelives


    Prijevod/Tekst: Marija Primorac, mag.act.soc


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    Marija P.


    Founder and the author of the MissStoma Health & Lifestyle Magazine. Also, an IBD warrior, cancer survivor, and stoma owner trying to spread the awareness about invisible illness that almost stole my life and about the invisible disability that gave me my life back.

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