Crohn's Disease has been a preplexing thing for me - all along.
I just got the diagnosis, and like many here, I was relieved...like man, the symptoms have been ongoing for almost a year and getting progressively worse. I missed so much time at work, and nobody could say what the problem was. My supervisor became sympathietic once he realized that I brought in an extra change of clothes. He just said "damn" and I could tell he was thinking he was glad it wasn't him.
I apparently had a flareup about 7 years ago, along with a partial small bowel obstruction, and that was the first time I had so much pain in my gut. But that seemed to just go away after a couple months. So I've been going along without problems until June last year.
I'm in that group of "older folks" where this disease onsets at 50. From what I've learned, it ususally has an earlier onset for most people like it did with you. But it's like there's a "second cutoff" later in life. So this was about as much of a surprise to me as it was to you.
The difference to me, at 50, was that I've had a few medical experiences that brought me close to the edge wondering about mortality. I had a "mini-stroke" (TIA) that scared the living crap out of me. If you've never experienced a stroke before, this was one of the most frightening things I've ever experienced.
Suddenly your tongue becomes half-dead and numb and you can't talk, you get this incredible feeling of like your arm "goes to sleep", except that it feels like 6-inch nails are not only going into your arm, but into your whole left side (for me) from face to toe. My arm just fell dead, and I experienced partial paralysis for the first time in my life. And this was sudden and totally unexpected.
I realized at that instant being partially paralyzed, that if I were completely paralyzed, I could still see and hear, and maybe blink my eyes, but I wouldn't be able to move my limbs at all, or talk and tell anyone what was going on. Somehow, after I recovered and all my feelings returned, my mind had changed afterward. So like when I went into a Home Depot like I had done some 50 gazillion times before, it was like I never had been in a store going shopping before - total confusion - and I couldn't find words to describe things either.
That came about from one single experience that lasted only about a minute, but it changed my life, and the way I view things from that day until now.
A couple years later, I had been diagnosed with Mesothelioma which 95% of the time results in terminal cancer to the lung and liver. But I was one in the 5% where the lung tumor was as big as an orange, but it was a non-malignant (benign) form of Mesothelioma. I'm grateful that I wasn't the man before or the man after.
So with these things that happened to me over time, which haven't yet happened to you - they sort of give you a different perspective on just being alive and staying alive with a reasonable degree of fair to good health.
Crohn's Disease is a nasty disease with a mind of it's own. What I hate about it is how it F___Ks with my mind! This disease will bring on clincal depression or trigger anxiety before I can say "boo". I find myself sobbing, or ready to jump out of my skin at the drop of a hat. But I understand that is part of Crohn's, and it does pass, or I do things regardless so I don't get stuck, and it will pass. I swear I was re-wiring my basement just over this weekend, running romex wire and pounding in electrical junction boxes while crying my eyes out. Sometimes I smash my thumb with a hammer or drill my finger because I'm crying so much that I can't see clearly. But heck, if I don't do the work it doesn't get done.
But I tell you what, when I hit the light switch in the bathroom this morning, and the exhaust fan stayed quiet but the lights came on, I smiled. Then I just hit the exhaust fan switch to hear the damn thing run. I DID IT ALL - I made changes to my home that involved hard work and skill. I got a ton of things done this weekend that make my life easier. Just two days ago, I was on my side with the good doctor exploring my disease through my butt-hole - then he gave me the diagnosis.
What I'm saying is even though this puts some difficult limitations on your life at 20-years-old, it doesn't literally paralyze you. It doesn't spread to your lungs or liver and kill you. What you'll be learning at 20 (if you choose to) is what you would have eventually learned at an older age. You now have limits that, try as hard as you like, you won't get beyond. It's simple but difficult, and yes it's hard to cope with. It's OK to have miserable feelings and feelings of loss, and to even feel sorry for yourself. All that happens to me sometimes on a daily basis.
If you start taking care of your health at 20, when you're 30 and jamming with your Stratocaster in front of a thousand people on a busy Friday at a popular club, you'll smile like I smiled when I flipped the bathroom light switch this morning.
You can still do things that only you are skilled enough to do. And you can do them better than anyone else. And you'll be able to earn a living and be happy, if you give yourself a chance - I'm just saying it's possible, doing those things only you can do. AND you can do them with Crohn's Disease.
