Living with Crohn's disease
When I was five, I suffered from hematochezia (rectal bleeding). At that time, my Crohn’s disease hadn’t been discovered yet, however I had to learn how to live with abdominal pain and digestive problems at a very young age.
At the age of nine, the disease broke out and I received my diagnosis. It wasn’t easy... It was very difficult to find the right medication for my body to benefit from a remission. I was constantly suffering from abdominal pain, diarrhea, bloody stools, fatigue, anemia, and scalp and nail psoriasis. Very often, cortisone turned out to be the backup solution to other medication failures.
When I had my third Remicade injection (intravenous drug), I had an allergic respiratory reaction. Thus, I started to have subcutaneous injections of Methotrexate, but I suffered from severe nausea after trying it for a few weeks...
For several years, my miracle cure to reduce inflammation in my colon became Humira. For my rectum, it was another story... Ever since, I have been trying to calm inflammation by using a Salofalk suppository every single evening.
After some treatment failures, the inflammation was no longer controllable. In October 2018, I developed vulvar edema (swollen labia). Worried about the presence of a rectovaginal fistula, my gastroenterologist had me take an MRI. The good news: no fistula! The bad: my gastroenterologist had never seen that before! The inflammation was so intense in my rectum that it extended to my genitals. I returned to Humira injections because we hoped it could reduce the inflammation, as well as the edema. Fortunately, it decreased, but not entirely. To date, following my surgery, I’m no longer symptomatic and all is fine on this side. Well, I explained this more intimate part of my life to reveal how fierce the disease can be, and not only with the digestive system.
In November 2018, I had an MRI again because I had an abscess, caused by an anal fistula. As it appeared within a single month, we understood that the inflammation in my rectum was acute. I had to undergo a percutaneous abscess drainage, as well as the installation of a seton stitch. That was a difficult step for me, because I didn’t want to have that seton stitch for my entire life. Finally, they had to remove it a few days later, because it was about to cut my skin by strangulation due to edema. Since then, everything has closed well and has healed!
More recently, another complication presented itself: severe stenosis in the rectum due to the still uncontrolled inflammation. Every day, twice a day, I had to take doses of Colace and Lax-A-Day, making sure not to skip one. Almost every morning, I was making myself a homemade hot chocolate, with a large amount of cocoa and squares of 70% dark chocolate to stimulate my intestines without irritating them as coffee does. Often, the urge hit me just before going to work. As I couldn’t and shouldn’t hold back, I arrived late at work too often. Despite all this, my intestines were never emptied completely, because the passage had become too narrow in my rectum. My stools were the size of my little finger and I had to raise my feet on a bench in order not to strain too much unnecessarily. In short, it was hell and it made me realise that I couldn’t go on living like this for long...
Read my next articles to discover the outcome of my story.