In May of 2017, as I was climbing home by the stairs, I had the feeling that I needed to go urgently to the WC. I arrived, and got into service thinking “little diarrhea.” When I finished and looked at the presumed diarrhea, I got scared, it was not so: it was blood, and filled the toilet bowl.
Naturally, I was scared. The next day, I was with my family doctor, telling him what had happened to me, and he examined me. What he saw did not seem to like him, and he directed me to the surgery service at the Hospital de Guadalajara so that they could see me there.
After doing the corresponding tests, they refer me to the Oncology service, where, after some complementary tests, they inform me that I have a locally advanced adenocarcinoma of the rectum, that I have to undergo several sessions of Chemotherapy and Radiotherapy, and that more possible is that they have to operate, close my anus and put a fixed ostomy in my gut, and that, from there, it will be forever.
When they told me, I sank. As a health worker, I know the fear of the word CANCER, and when I imagined myself with a bag hanging from my gut for what I had left of life and doing my biological needs like that, I felt less than sand from the sandbox of my cat. I felt that I had just stopped being a person.
After several sessions of Chemotherapy and Radiotherapy, the moment came when I was called to enter and operate: on November 29, 2017. On that date I entered, and the next day, November 30, I had surgery.
When, after many hours of operation, I woke up in the Resuscitation, it was night and I found that I had a slit in my gut, two drainages, (one in each buttock) … and a bag in my gut: my ostomy.
When I saw it, I felt unsuccessful and fatal. I cried and I felt the lowest in the world.
When the surgeon came to see me, and I asked him if he had not been able to avoid the little bag, he said no, that the tumor was too big, and that it was not possible. A few hours later, they took me to the floor, and there my convalescence began, and they began to teach me to take care of my stoma, to change the disc and the bag, etc.
With the support of my partner, my brothers, cousins, friends and others, with the encouragement they transmitted to me, listening to other patients to whom the same thing had happened, I began to assume that I would have this for the rest of my life, that I had two options: not to have surgery, to metastasize and go to another neighborhood … or to have an ostomy.
And of course, before that, for me, the option was clear: I wanted to continue and recover my life, to be able to see my classmates again (I have just turned 65 when I write this), and to recover my normal life.
I still have my fears, of course I do. I still partially hide behind my Ostomy bag. I am not a special character, nor a hero: I am like you, with similar fears to yours.
But I thought I had to do something, meet other people like me, understand me. For that reason, when I left the hospital, I thought about joining in Guadalajara some patient association like me … but there was not. In the absence, and after having asked the nurse who takes me to my Health Center and the nurse of the Ostomy Consultation, it seemed a good idea to try to set up an Ostomized Association … and I went crazy, and I got to it.
I started to put posters here and there, and as a slow drip as a constant, they began to connect with me more people. We began to talk with the Institutions, Professional Associations, political parties, social entities, etc., letting us know, and asking for their support to install # BañosParaOstomizados.
On June 9 we formally constituted ourselves and from there we will begin to offer support to other patients like us.
So that they see that yes, that there is life after an Ostomy.
That it is not worth getting depressed or underestimated by a bag. That life is long and beautiful, and that we have much to do.
Because it is not the same as a professional to give you scientific data to encourage you, to see you another person who has passed what you are going through and / or will happen.
Because if that person could and can, you can too.
So we know that, if you need support or help because you feel terrible, you will find someone who will understand you.
That you are not alone. That Ostomy is not the end of your life, but a new beginning.
For that reason, and for that, OSTOMIZADOS DE CASTILLA-LA MANCHA is created: so that no one, never again feels lost or alone, or that they do not understand, because we are with you.
And if you are or feel bad, remember: we have passed what you, and if you need us, we are with you. Do not hesitate, and connect with us. Our bags and we are at your side.
Enós-Tomás Pastrana Delgado,
President from the Castilla – La Mancha Ostomized Association
Email: ostomizadosdecastillalamancha@gmail.com
Nuestra cuenta de Twitter: @OstomizadosG
Nuestra Web: www.ostomizadosdecastillalamancha.org
Teléfono Institucional: 634501700, Todas las tardes de 16 h a 21 horas