“Two years have passed since I was diagnosed an Inflammatory Bowel Disease (Crohn) and so many people still don’t know what it is (I didn’t know before) due to the shortage of information shared.
They don’t know there’s no cure, they don’t know we take every day immunosuppressants as palliatives and that we are more at risk to get other diseases, they don’t know the social and psychological implication of living with it every day.
Imagine you ate everything you could possibly think was healthy, but still you had something that caused you cramps for 4 days…
Imagine you had a soup, a fish and a sorbet at dinner and still your belly was so swollen you couldn’t sleep at night…
Imagine you refused a free alcoholic drink, ordered a non-alcoholic one and still get uncomfortable later cause there was too sugar or something too fizzy in it…
Imagine the pain, the discomfort of having cramps knowing that you can’t just say to people “I’m sick” and giving explanation, cause now it’s a habit, you’re used to it as it’s become even more frequent than menstrual pain.”
This was my post on social media when the World IBD Week started last 13th May. It helped me sharing my experience with other people and listening to theirs and this brings me to add something more in this article.
When it all started in April 2018, I was spending Easter holidays in my hometown, Bari (Italy). In those days I couldn’t resist doing my usual “path of favorite food”, which had become a sort of ritual with my friends. On the first day I had two or three “panzerotti”, the typical savory turnovers originated in the south of Italy and that I couldn’t avoid eating. I strictly ordered those with mozzarella without lactose, due to my intolerance, but they were still very tasty.
The next day I went to the “Sushi all you can eat” restaurant, a mandatory step since ALL my friends like it and I love spending time with them eating Uramaki, Nigiri, Temaki, Sashimi etc.
Finally, Easter Sunday arrived, and you can imagine the quantity of food cooked and eaten that day: appetizers, lasagna, lamb, potatoes, vegetables, sweets and the dark chocolate egg as a present from my family. The meal was accompanied by a couple of glass of strong red wine and a limoncello as a final touch. Later that day I was feeling so full that I didn’t have dinner: my belly was swollen, and I started feeling pain. But it was holiday and I didn’t want to miss it.
On Easter Monday I went to “Foresta di Mercadante”, a forest in the hinterland of Puglia where people usually organize picnics during springtime. Despite the little but constant pain I was feeling, I wanted to enjoy the food that my friends had prepared with love, together with the typical food from my region: rustici (salty flaky pastries), parmigiana, focaccia, cakes and so on. I remember I also had half glass of vodka-coke to celebrate. Ah, how naïve have I been!
Some of you might find these four days of abundant food a usual routine, and still can eat in this way without consequences. But for me, this was just the beginning of a one-way ticket to a journey that will accompany me for the rest of my life.
When I woke up the next day, I felt immediately pain and had diarrhoea. Twice. I thought it was something I had eaten in the previous days: my stomach has always been sensible to after all, without knowing exactly why. I went to my GP and he gave me antibiotics. But the pain was increasing, and I had strong cramps and went sick other 2-3 times. I resisted one more day, until the pain was unbearable. I went to the hospital, where I started throwing up. I was very pale, and I almost couldn’t stand up from the chair. Eventually, they admitted me in the general surgery department, gave me metoclopramide for nausea, antibiotics, cortisone, paracetamol, gastroprotector, everything. I spent five days without eating at all, since I was still throwing up. Eventually, I got better and they discharged me. “It might not have been a simple gastroenteritis” – said the doctor. “I suggest you go deeper and schedule a professional visit with a gastroenterologist. It can be an inflammatory bowel disease”.
At the time I was doing an internship for a manufacturer dental company in Milan, and I was terrified to lose the opportunity to start a career with them due to the time I was forced to spend in my hometown, resting and doing all the exams I needed to find out what was going on with me. But my colleagues and the HR were completely understanding, despite my concerns.
After a long journey made of blood exams, colonoscopy, stool exams and medical examinations, I had the diagnosis: CROHN DISEASE.
It took me almost one year to accept that I couldn’t eat what other people do. And one more not to feel ashamed about it.
My life after two years since I was diagnosed the IBD is pretty normal. Or at least, I convince myself to think so.
I have a job, a house, a multitude of friends.
I’m surrounded by LOVE. That’s what I keep telling me. Love that I make mine. Love that I give and receive. Love that makes me feel stronger than ever.
I’m followed by a personal trainer, a nutritionist and a psychologist, and I don’t feel ashamed about it. Actually, I’ve just found out that it’s the GOLD triplet all doctors suggest us having.
Over this week, I listened and read about other people having the same disease: lots of them had surgeries and have scars, others lost their jobs, but all of them still SMILE.
ALL OF THEM.
I live knowing that my disease can get worse. “And so, what?” – I say to myself. I know I can face it. I know I can do it.