It was July 2016, in Montreal, Canada. I was about 27 years old. I had a cold or flu that would not go away. It was summer, and I had been drinking a lot. I went on a trip to see an old friend up north, and there were a few back-to-back events and many long nights. During that whole time, I was still hard at work. I mention this because I always thought that fatigue and alcohol played a part.
It was at least 2 or 3 weeks of having a regular cold but by the end of it I had white spots in the back of my throat. I’m not the type to go to the doctor until I really think it’s serious, and at this point, I still thought I would be ok anytime now.
It got worse, and eventually, I started missing work. It kept getting worse, my throat was causing me lots of pain. I had very little appetite but I could not eat even if I wanted to because of the pain in my throat. I’m not sure exactly when the ulcers on my tongue and mouth started, but soon I had white spots all over the back of my throat and tongue and mouth. I kept spitting because my mouth kept filling with drool. I went to the walk-in clinic and received a swab test and was given antibiotics just in case while awaiting results. I was told either way I should be fine in a week. By the end of the week, I showed no improvement and results showed nothing, so I went back to a different walk-in clinic. They gave me oxycontin pills for the pain and took more tests. I lost my voice by the end of the few weeks of misery, as well as at least 20-30 lbs. That is no exaggeration. I had found that the only thing I could consume was ginger ale soda when it was flat. After my second failed visit to the doctor, I tried to schedule another one a few days later to find out what was wrong with me. After a mix-up, I ended up getting no help and was told to try the next day.
The next day I noticed ulcers on my testicles and decided it was time to go to the hospital.
My mother (who is awesome by the way) took care of explaining everything to the employees and nurses. I had no voice, my skin was pale and I was spitting up in the bathroom every 5 minutes. It did not take long to be seen by a doctor. It was very obvious he had no idea what was wrong with me. After a bit of discussion, he convinced me to stay there overnight so I could get seen to quickly. He also said I needed to be on an IV because I was not eating anything.
I spent the next three days in the hospital, no one knowing what I had. I was told a few different times what it could be, only for them to change their mind. Despite being in the hospital, getting morphine by the needle and tons of Tylenol, I was only getting worse. My left ankle swelled up, causing me to not be able to walk. I had ulcers on my anus and possibly further in. I had excruciatingly painful diarrhea, and blood filled the toilet as well. I also began having little pimple-like dots on my back, arms, and legs. During the three days where I was still being diagnosed, I had every test I ever heard of, and then some. The lack of diagnosis only increased my growing anxiety.
I also had the pleasure of having a piece of my palet cut out by an ear, nose and throat doctor. I had my eyes checked, X-rays, ultrasounds all over my body, blood tests multiple times per day, urine tests, and other things I barely know how to describe. I spent 12 hours a day getting tested.
On the third day a new doctor told me they were almost certain they knew what I had, they were just eliminating other possibilities. They performed a test on me where they pricked me on my arm multiple times with a needle, to see if it would harden into the pimple-like holes I had elsewhere on my body. They did.
Once I was officially diagnosed I was given cortical steroids (Teva prednisone or something close) and within hours my ulcers were disappearing. By the next day, I was talking, eating a dry turkey sandwich and chugging Ensures. The progress astounded me and the doctors, and it was obvious they had successfully diagnosed me with Behcets disease. I was also given colchicine, some osteoporosis pills, calcium pills, magnesium in my IV, creams, a special mouth wash, eye drops and other things I’m sure I’m forgetting. By the end of the 4th day, I was feeling great and started asking to leave. I was still in different types of pain, but I was getting home sick. The hospital kept downgrading my room as I got better, which only made me want to go home more.
They let me leave on the 5th day with a last shot of morphine. I regret wanting to leave that urgently, looking back, but at the time I really just wanted to feel normal again. The first day back home was still rough, my house was a disaster and I was not ready to deal with it. I also had all kinds of emotions going through my head. I had been ignoring the growing paranoia that I would be diagnosed with something fatal, and when I knew I was ok it all came crashing down. I have a daughter, and I could not imagine dying at the age I was. My first couple of days back home were emotional, and I was very grateful to be alive. I am lucky to call myself a Canadian and did not have to worry about a hospital bill. I was taken care of and brought back from the brink of death. It might seem like an exaggeration, but that is how I feel to this day. If this had happened 100 years ago, I would probably not be writing about the experience. Just within the first three days of my stay in the hospital, my symptoms kept getting worse without any sign of slowing down.
I now know that my eyes were also being affected, and blindness is a common symptom of untreated Behcets in other places around the world.
Looking back, what caused my Behcets to flare up that first time, and get worse, is likely my untreated cold or flu, along with these “immune system enhancing” tablets I was taking. I took them the entire time I was sick, and even when I could barely eat towards the end before I went to the hospital. These tablets actually have a warning on them for people with any kind of autoimmune disease. They have a lot of echinacea in them, which is known to trigger flareups for people with autoimmune disorders. I took them, thinking I was helping myself fight my cold but was actually making my Behcets attack me with more ferocity. The sicker I got, the more I took. I would be willing to bet I took some the same day I went to the hospital.
I currently feel very lucky about the whole thing, my Behcet’s barely flares up anymore. It seems to happen only when I get sick. When I first got out of the hospital, I had to get one of those daily organizers for my pills. I had a whole set of different medications to take at different times. Lately, I only take colchicine when I get a cold, sometimes preemptively without even having a flare-up (not exactly by instruction of my rheumatologist). Besides that, my disease causes me little-to-no grief now, and I hope it stays that way. Knock on wood.
Honorable mentions of my hospital stay: I showed a room full of doctors and med students my testicles and anus, legs up, while they photographed and murmured to themselves with disturbing interest.