I have ulcerative colitis.
There, I said it. Do I feel better now? Not really. It doesn't change the fact that I’m scheduled for a proctocolectomy on Friday (surgery to remove my entire large intestine and rectum).
If you’re not familiar with ulcerative colitis, it’s an autoimmune disease that causes inflammation of the large intestine. Symptoms include abdominal pain, bleeding, and frequent trips to the bathroom.
For some, UC is just a slight nuisance. Flare-ups are fairly easily controlled by anti-inflammatory medication and short-term corticosteroids. For others, it can be extremely debilitating, to the point of not being able to leave the house. Those of us whose disease is more severe are forced to endure longer term steroid use, heavy-duty immunosuppressant medications, and in rare cases — if unresponsive to these therapies — even surgery.
Since my diagnosis five years ago, I’ve progressed from one extreme to the other. Early on, the medicine helped. I had to eat a somewhat restricted diet, but I continued to excel at swimming and lead a relatively normal life. Though after all these years, what “normal” really means I can’t quite remember.
At first, I swore I wouldn’t let the disease affect me. But as time wore on, the medicine started helping less and less. I gradually became less able to tolerate the rigors of training. I experimented with more toxic drugs, holistic medicine, and even hypnosis. Nothing seemed to alleviate my symptoms. My diet became more and more restricted. I unintentionally lost ten pounds, then twenty. (On a positive note, I had washboard abs for the first time!)
About two years ago, I decided to stop all my medication, just to see what would happen. After a few months, I found myself in the bathroom twenty times per day. I went back on steroids and haven’t been able to get off since.
With steroids, I’m more or less okay most days. I’ve become accustomed to a new “normal.” I wake up an hour early every morning to do my bathrooming. I eat the same few bland foods that I tolerate well every day. I know where the closest bathroom is at all times.
Yet despite my outwardly open nature — exemplified by my penchant to remove my shirt at a moment’s notice — I’ve maintained relative secrecy regarding my disease. Why not just tell people? Mostly, I don’t feel like going into the details. Plus, I don’t want people feeling bad for me. But also, the fewer people that know, the more I myself can ignore it.
|Left: Before UC, Right: Now|
(also with and without chest hair -- just to make the difference more dramatic!)
Food has been one of the biggest struggles for me, though I do like to think I’ve come up with pretty decent excuses. Why can’t I have ice cream? Dairy allergy. Why don’t I drink? Don’t like the taste of alcohol. Why don’t I eat bread? #paleo. Why don't I go out to eat at restaurants? Saving money.
But I just can’t ignore it anymore. The side effects of long-term corticosteroid use are too risky, the likelihood of cancer or a life-threatening perforation of the colon too great. I’ve had to spend the last few months coming to terms with the inevitability of surgery. It just sounds so… irreversible. What if the cure comes out next month? Then what? Oh, sorry we took your colon out?
It’s not all bad, of course. The surgery itself is a “cure.” I use quotes because the procedure is no picnic, and I’ll never truly be the same as I once was. I’ll always make frequent trips to the bathroom and have to be careful what I eat, but at least I’ll have more control. I’ll also be healthier — able to eat more foods, able to gain weight, able to live my life.
So what’s kept me from hitting rock bottom through tough times? Lifting weights, of course. Not to brag (well, maybe a little), but even in the depths of illness, I’ve still managed to make it to the gym consistently, about six days per week. I feel my best during and after a tough workout. It’s just that simple.
Despite doctors telling me intense physical activity is dangerous in my “weakened” state, I firmly believe quite the opposite — that it’s kept me functioning “normally” given the severity of the disease. After all, how many people do you know who can do 27 strict pull-ups? Granted, it does help that I’m only 115 pounds.
I’ve always believed that you can do anything you set your mind to. Being born with one leg will do that to you. In similar fashion, I swore I wouldn’t let the disease affect me.
Doctors told me to take time off from swimming to get better. I proved them wrong (at least for a while), setting two American Paralympic swimming records. Doctors told me to avoid exerting myself in the gym. I continued setting PR’s. Just a few weeks ago, I even won a body weight exercise competition.
Some challenges, like having one leg, are visible to the naked eye. Others, like ulcerative colitis and other autoimmune diseases, are less so. But no matter what, I truly believe that anything is possible.
The time has now come for me to take a break from quieting the naysayers. Give me a few months to recover from the two-part surgery, though, and I’ll be back — with every intention of reaching previously unimagined levels of one-legged strength, power, and all-around physical prowess.
UPDATE!: No Leg, No Colon, No Problem (8/9/15)
UPDATE!: No Leg, No Colon, No Problem (8/9/15)