My son started feeling pain at age 11. I would give anything to go back in time and erase the FOUR years he suffered and bled into the toilet before we caught it and he was diagnosed.
I know what you’re thinking, “Four years? How could she not notice?” But I didn’t see any traces of blood, and so I didn’t know what questions to ask. Most of his symptoms are internal, painful, and suffered behind the bathroom door.
This is Crohn’s disease. And it hits hard between the ages 11 to 16, mostly boys. He was so young, he told me later, he just thought it was normal. If we had only talked about it… just once! God only knows the pain we may could have avoided. Maybe it wouldn’t have gotten so bad that he became dehydrated and anemic from the disease.
It comes on gradually, bringing blood loss and pain. Remove it and it can come back somewhere else. Some pills help, some pills make it worse. Temporary relief is the best you can hope for. It will never go away. I hate it with the same passion that I love my son, and for the rest of my life, I will probably be working so he can have medical care. Although he has had surgery, and watches his diet, he barely weighs over 100 pounds. His body doesn’t absorb any of the nutrients he puts into it.
He wanted to be a chef before all this happened. But he can barely eat.
Social Security Disability is not a dream I had for his future. So I worry … how his sick body will limit his brilliant mind from doing all the things he is capable of, how it will steal time by slowly suffering while the world goes on outside. I am disgusted at how our supposedly great country is not capable, or willing, to help someone in his position. And if we have to drive to Canada or swim to Amsterdam for free health care, we will do it.
Most of all, before anything else, I just want his pain to stop. If there were deals with the devil, my soul would be gone, just to see him healed. If prayers were answered… well, they apparently aren’t. I look at other teenagers, in their first cars, having a good time, eating ice cream at Sonic, and I hate Crohn’s disease. I look at other parents and think, “I hope you appreciate the fact that your child is healthy.”
All the things my son is missing cannot be replaced… I can only be his worried and dedicated advocate, his caretaker, his nurse, and most of all, his mother. But I cannot be his cure. It might not kill him. But it is killing me.
I feel for you, I really do: I have a son who was born with a chronic medical condition, (not Crohns, but serious); AND my grandson has Crohns. He is now nine years old, and he’s been having pain and bleeding almost since birth. What worries me so much about him is that he started getting symptoms so young, when, as you point out, most kids get them later. I’m afraid his will just worsen. He’s on meds, and he changes his meds frequently, reading your post I think I understand why. Poeple with healthy kids have no concept of what this does to a parent. It’s killing me to watch my daughter go thru the same kinds of stuff I went thru with my son. It’s a whole other parenting experience from “the norm”. Good luck to you and your son.
Thanks and good luck to your family as well! Take care!