Hi Josh,
I'm new here, but I'll go ahead and welcome you, too. You have a serious illness, my friend, but it is a disease that we can live with, and if we're serious, we can make a worthwhile life happen with this disease. I'm stubborn as a mule with this, and I've been beat up with a few dozen other conditions before this disease sprung up.
There was a time when I wanted to give up and die. My will to live was just about gone (it was during a time when I had pneumonia). Then I got beat up more with a mini-stroke, and then kidney stones. Even today my speech doesn't work quite like it used to. Today I was talking to myself, and I said some word and my lips would not do what I wanted them to do. I spent a half-hour trying to "retrain" my lips to move the right way using my hand, and doing excercises with my tongue and lips. I must have looked like a fool to anyone watching me!:tongue:
That's just a long way of saying that if you want a life that's worth living, like mine is, sometimes it takes hard work and a stubborn will to not only live, but a strong will to find the good things that are still here in front of our eyes - things we can enjoy and take stock in that life is fun in spite of circumstances.
You look at some of these gals who post here like "Dingbat" and "Marissa", and "Kello" - and all the rest of these members (men and women) that have posted thoudsands or hundeds of replies and talked about probably every darn thing that can be talked about concerning Crohn's Disease. I wouldn't try to get in the way of their determination because I'd get run over like a steamroller! They are many people who know how to find strength, even in the middle of weakness or physical battles like you're in right now. Then they take the time and energy to give of themselves for your sake and mine, so that we can be helped to find hope from their experience.
I understand how discouraged you must feel. I've been that way, too. You're not alone. All of us here come from many different places, and have beliefs, left to right. But I'm thankful there's a place here where we can share our "little wins" that give us more strength to do what seems to be impossible.
I have a son your age, and it's hard to picture him with this same disease. I'm sorry that you're facing such pain, and knowing, well this is a lifelong journey. I know it's not a real bright spot in your life.
My girlfriend's sister has Crohn's and she's about 52. When she was 25, she had her large bowel removed and began using the stoma (sorry if I said it wrong). Maybe that doesn't sound hopeful, but today she has 2 sons, 3 cats, and a loving family. Last year she had her first flare since she was 25. Hope is still alive for the sister; 27years after she got the same news that you got, Josh.
Back then, the medical knowledge was not as precise as it is today. My girl's sister survived and is having a better life today because she has this sheer determination that the disease would not define her - she wasn't going to allow Crohn's Disease to become her identity. I wish her diagnosis would have come today instead of 27 years ago, because when it onset, she was your age, Josh, and there wasn't near as much research and information as there is today.
I believe that there is always hope. I'm suggesting that you "workout" and "build up" your heart and soul on the hope and experience that is shared here. This disease is not easy, especially if you're an old coot like me who's sometimes set in his ways, pretending he's "superman" like I was when I was 20 years old. It took me 2.5 hours yesterday to vacuum and clean my living room and dust (yes I dust - probably my "inner female" at work). But I didn't finish dusting cuz I ran out of steam! Little "housecleaning" tasks like this used to take me only about 20 minutes at best, but it took me 2.5 hours.
I was in pain, my back was nagging me, and I was shaking hands with a toilet paper roll every hour while "dropping the kids off at the pool". I was fatigued, too, and had to rest every 15 minutes. I just shook my head and grit my teeth and did the work, slow as hell, but I started and got finished.
It took me some 30 years of work to get my life in decent shape. Now that my life is in pretty good order, it's comfortable to live in my own skin. Buddy let me tell you what, I'm not surrendering my life and what I've accomplished to this disease! Crohn's Disease is an illness of my body. It's physical for the most part, but it will try to get my mind too.
As long as I'm able and have breath left in me, I'm gonna give living my best effort. In fact I'm determined to make more of it. Sometimes its a tiny bit little each day, but it's my only life. It's up to me to make it a better life.
Thanks for joining and sharing,
Joseph