Part 1: The Highs
Significant Signs of Improvement
Within a month of starting this medication I’ve seen several welcome improvements in my Crohn’s disease symptoms. I‘m documenting those improvements here in graphic but mature, clinical detail. Fair warning.
My primary health challenges are digestive problems and frequent intestinal pain. Before I starting medication I’d have bowel movements more often than the average person. At its worst those movements become urgent, painful, and would happen as much as five times a day. In order to speak at a conference or work at a client’s office for more than a few hours, which I do often, I would load up with various over-the-counter preventative medications. That has consequences within a day or so after I stop taking that over-the-counter medication. But I had gotten symptom management down to a pill juggling science.
I’ve had two infusions of the new medication so far, with immediate improvements in my digestive symptoms. Intestinal pain has all but disappeared. Bathroom trips have been cut in half or more, and I’ve become reacquainted with an old friend that I haven’t seen in more than fifteen years: constipation. Constipation and I aren’t hanging out on a daily basis, but if I eat the things that conventionally lead to that sort of digestive situation such as cheese, roughage, or granite bricks, my body reacts the way that a normal digestive system would react. It’s a welcome pain, and as a result I’m more conscious of what I eat.
A secondary and bizarre symptom I’ve managed is a “subcutaneous adema in various extremities.” In English, that means that fluid builds up in your skin, leading to the skin becoming a lot thicker and inflamed. For months I cycled through nearly every doctor in the dermatology department at a major hospital for remediation or management strategies. After several ineffective solution attempts, a physical therapist advised me to wear compression garments and if necessary, wrap compression bandages around affected areas to compress the fluid out of the skin each day, hour by hour. Perhaps you’ve seen a diabetic with bandages on their legs. This is an identical approach for an similar problem.
At worst, I would have to wrap parts of my body in bandages and then pull very tight undergarments over those bandages in order to try to reduce the fluid that had built up. And then get on the train for work, or got on a plane for client pitches, client meetings, and speaking gigs. When this first started, it was a huge, depressing life change. Clothing choices and other daily routines became much more complex. I was angry for some time; resentful of my disease. But eventually I got used it. With the exception of my wife and my brother, no one else in my life really was aware of the scope and awkwardness of these challenges. When I started my own company, the flexibility and autonomy in my schedule was a relief. I’m proud that I rose to meet this weird challenge that my body threw at me, but I also felt uncomfortable and embarrassed most of the time. I continued to see the hospital’s head of dermatology regularly for the next four years.
Recently I saw the head of dermatology at that hospital for possibly the last time.
“If you are on this medication, there’s nothing stronger I would prescribe. This will probably address all of your skin issues within the next few months, if not fully, then partially. Call me if you need have any negative issues.”
I’ve seen significant improvements in my skin, and on some days, I’ve gone compression free without any problems.
Overall, this medication has done exactly what it’s intended to do, but it has only been a very short amount of time. I’m thrilled about these results, and hopeful that they will continue for years and not just months.
However, there are side effects and other challenges.
