Inflammatory Bowel Disease in Children and Teenagers

Inflammatory Bowel Disease in Children and Teenagers

Lucy: I was in 7th grade. I had just started my lacrosse season for that year and my parents noticed that I was not eating as much and I was a little lighter, so they weighed me and I had lost 12 pounds in about four months.

Polly, Lucy's mom: It came on real fast, from kind of normal teenage woahs to something's really wrong.

Sherri, William's mom: Stomach issues like cramping, diarrhea, bloody stools, and he was starting to go to the bathroom like 20, 30 times a day.

William: And sometimes you need to rush to the bathroom. When you're 14, 13, it's really embarrassing.

Erin, Landen's mom: Well, I remember the first time noticing he had blood in his stools, and by the time he was 1, he just was really, really sick. He was becoming very anemic and he just didn't have the energy to do anything.

Sherri, Williams mom: I didn't know what it was, how you got it.

Erin: Because we just at that point I think felt helpless.

Lucy: Pain in my stomach was so bad and I was … I just kind of was thinking that was how I had to spend the rest of my life.

Erin: So we reached out to his pediatrician. I think the doctor there was like, he's so young; I want him to go to the best of the best.

Andrew Grossman, MD: The Center for Pediatric Inflammatory Bowel Disease at the Children's Hospital of Philadelphia is the largest center for children with inflammatory bowel disease in the country and we believe, in the world.

Robert Baldassano, MD: Inflammatory bowel disease is made up of two diseases people refer to as Crohn's disease, where there's inflammation throughout the GI tract from the mouth down to the anus, or ulcerative colitis, where you have inflammation in the colon or in the large intestine. So, unfortunately, with inflammatory bowel disease, there is no cure. When kids come to us, often their lives are quite difficult and these kids have no appetite, they have no energy, they have abdominal pain, they could have diarrhea. And so it really is important to try to fix all those problems.

Judith Kelsen, MD: From the very beginning, the first point of contact that the family has with the CHOP team, they know that we're taking them seriously and we're focused.

Robert Baldassano, MD: To diagnose inflammatory bowel disease can sometimes be rather challenging. It's really pieces of a puzzle and you have to put this puzzle together.

Judith Kelsen: It makes us the happiest when we're able to say to someone, we know what this is and we know what to do with it.

Erin: We saw Dr. Kelsen, we didn't really know what to expect and we were worried and scared, and then she came in and she just looked at us and she was like, Landen's going to be OK.

Janine McDermott, RN: We really look at this as a team approach. You're not coming just to see an IBD doctor; you're coming to see the team.

Judith Kelsen: We are incredibly lucky to be here at CHOP where we have GI, or gastroenterology, but we also have the leading expert in immunology.

Andrew Grossman, MD: We work with some of the finest pediatric surgeons in the world. Some of the best pediatric pathologists in the world. Our nurses are really top notch, world class, and we all work together as a unified team.

Janine McDermott: We sit in meetings every week and we discuss tough cases and they value my opinion as a nurse as much as the director of the IBD center. Having the team together to think about the child together will allow us to make a much better therapeutic plan.

Sherri: If you know exactly what's going on and what to expect, it keeps your stress level down a little bit.

Polly, Lucy's mom: They immediately made us feel at home. They explained everything so well. I always loved that they talked to Lucy as much as they talked to me.

Lucy: I know it's a hospital, but it doesn't really feel like a hospital; it's very like colorful and very positive.

Erin: Everybody gets to know the name; everybody gets to know their story and just makes you as a family feel like you're in a safe place.

Robert Baldassano, MD: It's a little challenging to pick the right therapy for the right patient and that's why it is important to go to a center that has the experiences of all the different therapies. And then patients immediately realize that we have resources here that just are not available elsewhere. If a patient comes to us and they're very young, 3 years old, they'll be seen by people who specialize in very early onset IBD.

Judith Kelsen: It's critical to have a specifically directed program for very early onset IBD because their disease is often quite complex.

Andrew Grossman, MD: The hallmark of testing for inflammatory bowel disease would be endoscopy. That would include an upper endoscopy and a colonoscopy. Those are performed here in our Endoscopy Center. We have qualified pediatric anesthesiologists, pediatric nurses and, of course, our Endoscopy Suite staff who try to make that as comfortable as possible for the child. There are some nutritional therapies.

Natalie Stoner, RD: Nutrition is a critical part of management of IBD here at CHOP. With good nutrition, we see better disease outcomes. I can't tell you the amount of joy that I feel when our families come in and they see me and they say, you know, we tried new foods; we're gaining weight.

Andrew Grossman, MD: Our hope is to treat this medically or nutritionally, but there are instances where surgery might be the best option.

Polly, Lucy's mom: I don't think we were frightened of surgery because they explained it so well and they were so calm and kind about it that we knew it was going to be better than how she had been feeling.

Andrew Grossman, MD: The overall goal is to find a cure.

Janine McDermott, RN: Right now, we have over 40 trials for research dedicated solely to inflammatory bowel disease.

Judith Kelsen: I think the future is giving somebody gene therapy where we say, you have one small letter off in your gene, we're gonna fix that one letter and you'll be good.

Robert Baldassano, MD: And even some of the studies recently have saved these children's lives. My own story's maybe a little bit different. I uses to be a systems analyst, and then I was diagnosed with Crohn's disease. And once I was diagnosed I thought, who's better than me doing some of this research. And so I stopped being a systems analyst and I went to medical school. When I see these kids, I think about where I was and I know how they feel and they need to get better.

Sherri: It's been about at least five years since he's been in crisis and had an ER visit.

William: I don't have to go to the bathroom as much. It's just amazing.

Lucy: I've been in remission for about four years now since my surgery. I feel fantastic.

Sherri: If we didn't come here for a second opinion, there would be no gymnastics, there would be no public school.

Erin: Dr. Kelsen was like, we're never gonna tell Landen or you that he can't do anything because of having Crohn's.

William, Landen's dad: It’s nothing that we need to shelter him and things like that.

Erin: We kind of want to let him figure out what he likes and what he wants to do and we're just there to support him.

Andrew Grossman, MD: Quality of life is feeling normal.

Judith Kelsen: IBD is not something that's going to stop them from living their life. They can absolutely do everything that they have always done and maybe even better.

Sherri: Sky is the limit.

William: When I'm doing gymnastics, I think about nothing but gymnastics. I wanna be in the Olympics; t's like really up there, but I'd love to be in the Olympics.

Lucy: I'm hoping to be committed to a college for lacrosse within the next two months. I want to be a pediatric nurse because I really wanna help kids and I saw the impact that the nurses there had on me and all the other kids on my floor.

Judith Kelsen: I love coming to work every day. I love working with the team. I love taking care of these little kids.

Robert Baldassano, MD: And I tell people, I know these kids, they're like my friends. I've known them from when they were little kids. I think about the days when we met and they were really sick and now I see them going off to college.

Judith Kelsen: The future’s incredibly exciting. Our team is ready and I think we're super excited to go on to the next question and the next challenge.