The daughter of close friends just found out she has Crohn’s Disease. She’s suffering a lot right now, and I know exactly what she’s going through. This post is for her.
Hello, my young friend. I’m sorry that you’re hurting so much right now. I was diagnosed with Crohn’s Disease when I was around your age, and spent many weeks in the hospital between ages 8-16. It stinks. But if there’s one thing I’d like you to remember after reading this, it’s that it WILL get better.
I experienced all the things you are now — the massive loss of blood, the knifing pain in the gut, sleepless nights in the bathroom, and more blood.
A couple times, I’ve been told, the doctor’s came close to removing the colon. Too much of it was under siege and they didn’t know where to start in terms of targeting it. But it never came to that.
The pain was pretty intense. I really don’t know how my parents were able to get through it. I think it would cause me more anguish to see one of my kids suffer than to go through it myself. That had to hurt. Especially since they lost another child along the way. It also couldn’t have helped that I would be in the hospital for six-week stretches in 1978, 1979, 1980 and 1981.
I mention this because you should know how hard it is for your Mom and Dad to see you hurting. They’re new to this Crohn’s thing, and they will worry endlessly about what they are doing for you and whether it’s the right thing. Be patient with them if you can. But if you need to yell at them once in awhile so you can cope, go ahead. That’s what parents are for.
As you will probably soon discover, the most popular drug to treat what’s making you sick is Prednisone, which comes with a long list of side effects. Your face might get puffy and you’ll want to eat everything in sight. But you’re a strong kid and you can handle that.
A lot of people helped me survive a childhood of brutal Crohn’s Disease: My parents, great doctors, school friends who helped me catch up with my schoolwork and rooted for me whenever I got out of the hospital, and a great therapist who helped me sort through the mental byproducts of illness.
I think you’re going to get through the current attack and that you will be able to move on to a better life. Again, I lean on my personal experience.
I’m probably one of the luckiest Crohn’s patients on Earth. The last bad flare up was in 1986 and I haven’t had once since. I still go through frequent periods of inflammation, but nothing that requires drugs or hospital stays. The colon is checked out every other year to make sure the layers of scar tissue don’t run wild and morph into cancer.
Had the doctors removed the colon when I was a kid, I think things still would have worked out. I would have learned to live with it. Whatever you have in front of you, I think you can make the best of it and push through.
Be strong and keep the faith, my young friend. I hope you feel better soon.
P.S.: Here’s a picture of me the year I was diagnosed. I’m the kid at the very back, right in the middle. As you can see, Crohn’s Disease couldn’t kill my smile. It won’t kill yours, either.