Chronic patients got to learn how to live in a world of uncertainty. We do not know how the next day is going to be, either we will have a flare or if the treatment will work. Perhaps, the first thoughts we have as chronic patients are questions about our health since we wake up.
I’m Luciana, and living a life of uncertainty has not been different for me. I was diagnosed with Crohn’s over 30 years ago when the medicine was not as advanced as today. I had uncountable stays in hospitals, flares, treatments that didn’t work, complications, surgeries and always not knowing what would be next.
I understood from my early adulthood that life can be too short, especially when you have a chronic condition, so I choose to live my life to the fullest. I have had many unexpected adventures whilst traveling, in particular searching desperately for toilets. I never let Crohn's define me, despite the constant flares and hospitalisations.
When I met the man who years later became my husband, I had no doubt about telling him all the truth about my health issues since the beginning. How could I be myself, pretending not to be?
We have been together for nearly 20 years and we have two wonderful boys. Definitely I can say that the best years of my life have been as a couple, despite all the health problems and complications I had.
But, it was in 2016, after many hospitalisations and complications that Crohn's can cause, that my doctor said that we didn’t have any other better option but having the end of my colon permanently removed. This meant having a permanent colostomy. It was such a shock that I felt I was gradually falling apart.
That uncertainty gave space for something certain that soon would happen. It took me months to digest the idea that I would have a bag attached to my tummy for the rest of my life. Every time I started talking about it, I couldn’t hold my tears of despair. I was literally living a nightmare.
The day finally came, it was a long surgery, it took more than 8 hours. When I woke up, I had no idea how long it was and how difficult it was. My body was not the same, I was mutilated for the rest of life.
Next morning, when the nurses took me for a shower, I looked at myself in the mirror and that was “the new version of me”. I was devastated, I wanted to scream, to cry, to leave that body, but they were just thoughts….
Something went wrong during the surgery, since the first day after surgery I had a hernia, a big one the size of a melon. Doctors said that it would go away, as all my abdomen was swollen from the procedure, but it didn’t.
To Make things worse, my stoma was completely retracted and another surgery was needed, just 10 days after the first one. Unfortunately, my recovery wasn't the way we expected, I started vomiting continuously, a CT-scan was required and an obstruction was confirmed. Again, another surgery 9 days, after the second. I was physically and mentally weak, my recovery process was long, I ended up staying in hospital for 34 days and most of the time at ICU. I was overwhelmed by the damage caused to my body and soul.
I left the hospital feeling that I would never be the same, thinking that I would never do the things I was used to.
The next three months were the most challenging in my life. Every day I looked at the mirror, I wanted to cry. I lived through the five stages of grief. Denial, Anger, Bargain, Depression and Acceptance.
Acceptance is the last and the most difficult step, you reach this stage when you realize that it's better to embrace your new condition and make the best of life. You are still the same person you were before, the only thing that has changed is your physical way of making poo, but it doesn't prevent you from doing the things you love in life. It takes time, but once you accept your condition, you realize how good life can be despite the new challenges.
My life has changed forever and it changed for the better. It turned out that I do much more now than before. After my 5 surgeries, yes 5 surgeries because in 2017 I had two others too. I had a hernia repair surgery and 3 weeks later I was taken to the ER, hours later it was confirmed a bowel obstruction which resulted in another open cut surgery. Unfortunately the hernia came back after two surgeries to fix it. Besides having the stoma, having a hernia is another process of acceptance, but I've got over it.
Despite the parastomal hernia, I moved countries twice, had many trips and hikes, dived in the sea, hiked at the greatest mountains in California, hiked through the Grand Canyon in Arizona which was another dream come true.
I've never stopped dreaming and fulfilling my dreams.
Today I live in Midlands, UK and the only reason I am not traveling is because the world pandemic Covid-19 is preventing us, but I carry on having my daily walks 7-10km a day and doing my workouts. Honestly, I only remember I have an ostomy when I need to empty the bag, otherwise I don’t.
I’ve had many amazing experiences in life, thanks to my ostomy! It has been nearly 5 years since I’ve got a second chance to live and explore the world with quality of life.
Great story Luciana, glad im not the only one to have had complications, ICU etc. I’ve had my Ileostomy 38 years, restored my health. But complications from a hysterectomy 6 years ago, have left me with a fistula which goes from my abdomen to my skin so that’s a different beast completely. I’m finally reaching some kind of acceptance as I have no choice, sink or swim, currently swimming x
good luck !
Thank you Marcia for your kind words. Never feel sorry for yourself, instead feel proud. Life is precious, the bag gives us a second chance to have a better life. Keep being positive ️
Amazing story. I sometimes feel sorry for myself until i hear about someone else's story. I have an ileostomy and an urostomy due to cancer of the cervix. My life definitely changed but I'm determined to stay positive for myself and my family.