I had an appointment with my current doctor for my yearly physical today (May 6, 2010) and had to fill out some paperwork. So I’m writing in the date and I realized that I had to put the year — 2010. And I thought back to how ill I was with Crohn’s disease 10 years ago. That I was able today to drive myself to the doctor, walk unassisted to the office, sit and wait without being in agony — all these things were unthinkable back in 2000.
By May of 2000 I was pretty much bedridden. The best that my gastroenterologist could come up with for me was to take a succession of Tylenol with Codeine, Vicodin, Percocet, etc. as painkillers while I lay in bed all day in pain. I was in such a mental fog that watching TV became difficult — I couldn’t follow and remember what was going on from scene to scene while watching a show. Fevers, night sweats, and gut pain were constant. And back pain. Severe back pain that made walking miserable and car rides impossible (every time the car went over the tiniest bump the pain was so intense I wanted to cry).
My general practioner at the time thought that some physical therapy might help with the back pain. These were a nightmare. Just trying to walk to the car was bad. Mary would drive me there and every little bump in the road was agony. I had to try to go to the bathroom enough that I could make it through an entire therapy session without needing to go again. I was so weak I couldn’t do any of the balancing exercises — very frustrating as back in high school I got my brown belt in Tae Kwon Do, and now here I am barely able to stand when I used to be able to easily kick people in the head.
My condition worsened throughout the summer. Eventually my gastroenterologist tried putting me on 6MP (Mercaptopurine). My Crohn’s problems got worse, the night sweats and fevers got worse, and to top it off the 6MP made me vomit constantly. A friend who was a doctor suggested I stop taking the 6MP. I did and at least the vomiting stopped. My gastroenterologist thought that it had nothing to do with the 6MP and suggested I start it again. I did, and right away the constant vomiting started again. The vomiting on top of everything else made me dehydrate rapidly and eventually I was so sick that I was told the only thing to do was to go to the hospital.
I had never been hospitalized before and this was very frightening. Now on top of the pain and weakness, I was actually going to the hospital — which meant that beyond it being miserable, it was actually life-threatening. I guess I had never really looked hard at that concept before — that this Crohn’s disease could/would kill me.
I remember a long wait in the ER before I was admitted. It was August 16, the day before my birthday — and up until that point I had not been in a hospital since being born (except for some hitting my nose on a picnic table that I don’t remember from when I was a little child).
After they finally found a room for me, I remember the horrible feeling as my wife said goodbye to me so she could go home and take care of the ferrets. I have a lot more to say about all this and about my many hospitalizations, but that’s not the point I want to make today.
My point for today starts with: back then I was all alone in the hospital wondering if I would die.
AND YET here I am today – ten years later. I’m strong and healthy enough that I could lift and carry the sickly me of 2000. Back then, I never would have thought that possible. Now I’m 43 and feel pretty young most of the time, though when I was 33 I felt like a weak old man.
Can this happen for everyone with Crohn’s disease? I don’t know. But I do know it is possible — which is something that I didn’t know back then. And I think that’s one of the most important messages I can give on the whole topic (because no one said this to me back then) — don’t give up trying to be healthy and looking for what works for you.