My Kid with Crohn's

This is a transcribed interview that took place in person with Mary Steinke. Her son, Peter, was diagnosed with Crohn's Disease at age 16.

Q: What was it like leading up to his diagnosis?

A: I knew that something was wrong with him and it was going on for a long, long time. He missed quite a bit of school. He was just sick all the time and he was going to the bathroom all the time. It was really bad.

Then he was losing a lot of weight and I finally said, Peter, you’ve got to go to the doctor, because he hadn’t been just to the family doctor in a while. So we took him in and he went in on his own cause he was 16. I don’t know what was said, but when he came out the doctor came out with him. She came out into the waiting room and said, “Peter’s fine. He’s just fine. He’s just a skinny kid. I’m going to send him for blood tests but everything is fine.” And I’m like, no, something is wrong.

So he went for a blood test and it came back that he was anemic and we called her back and she said, “The only reason a male is anemic is because they’re bleeding inside.” And it was like, you’ve got to believe a mom, because moms know if their kids are sick.

Q: How do you know if he’s feeling sick?

A: Oh, I can tell. I can tell by how he walks up the stairs. He won’t interact if he’s not feeling good. He’ll just come up and do what he has to do, then he’ll leave. He won’t interact with anyone. If he comes up and I say, “How are you doing?” and he says, “I’m okay,” then I know it’s going to be an okay day. And if he says he’s not feeling good, then he’s really not feeling good, but I had to learn the signs. If I know he’s not doing well, I also know not to bother him and let him do his own thing. He doesn’t like being bugged, so if he’s not feeling well…stay back.

Q: What goes through your head when he tells you he’s not feeling well?

A: Usually when he says he’s not feeling well, he’s usually really not feeling well. And he doesn’t say that very often, so it’s not fun when I hear it. I’m a little worried right now because the medication is stopping to work and he has to go back for another treatment and he’s in this lull period.

I’m afraid it’s going to get really bad, because when it gets really bad, it gets really bad. He’s down and out and in bed, can’t do anything. That’s when his life gets interrupted. I’ve never had him say he feels good. I don’t ever remember him saying he feels okay. You kind of get used to him being never okay, but better days verses worse days. And bad days are scary.

Q: Do you worry about his future?

A: Yeah. You’re not supposed to ask me that question. That’s something I’m really scared about. I hope nothing ever happens to him that’s really bad. But he can’t go to school right now and it’s hard. He’s supposed to be in school, he’s supposed to be doing his young-adult life and he can’t.

He’ll figure it out. I know he’ll figure it out. He just needs to find the right niche that will match what he has to live with. But I know he’ll figure it out somehow. I just hope he has a nice long life... and I think when he gets everything under control he’ll be able to be okay. But it’s really hard getting him there and he hasn’t been there in a long time.

Q: What do you want Peter to know?

A: I think he knows that I love him. He knows I’ll do anything for him. And he knows he’ll always be able to come here. Cause I know there’ll be times in the future where he’s in timbuktu and needs to get down to his hospital and whatnot. He’ll know he’ll always be able to come here and we’ll always be there to help him.