There is so much to learn when becoming a young adult and dealing with a chronic condition. It may seem overwhelming, and you may wonder who is going to help you, and what are the most important things you should know as you begin this journey.
Camp is a great way to learn how to self-manage your condition — but with a safety net of medical personnel nearby if you need them.
Transition to Adulthood with a Chronic Illness: Camp as Practice for Adulthood
Anne Grant, MSN, CRNP: Camp is a great way for parents and children to begin to prepare for transition because it involves a week away from the family setting in a very nice setting that is manned by medical personnel with lots of activities just like a normal camp where kids just get to be who they are and no one feels, sort of, really isolated or strange or the only one like that.
Sarah Reilley: It's a great environment. You're treated as any normal kid. You can go out and play volleyball and swim in the pool, and nobody looks at you like, "Oh, you're the sick kid," because they're all sick there, so we're all the same.
Susan Peck, MSN, CRNP: They're asking questions about their medications, they're talking in the cabins about what it's like to have inflammatory bowel disease and now be in college or be out of college and coming back as a counselor. All of those conversations are happening in a non-stressful situation.
Maggie Baldwin: Well, I think camp gives you the experience of a home away from home, away from your parents, so you do learn how to take care of yourself at camp.
Anne Grant, MSN, CRNP: They're well cared for and their parents realize they can go to camp and do the things normal kids do and everything — they come back in one piece.
GI Patients Moving to Adult Healthcare: Staying on Your Medicines
Maggie Baldwin: Yeah, I'm actually starting to write down the medicines I take and when I take them just so when I'm in college I know, "Don't get them mixed up and get sick because I didn't take my medicines at the right time."
Sarah Reilley: You learn that if you don't take your meds, you're going to get sick, and I've gotten past that point a few times.
Mark Osterman, MD: Sometimes people are, you know, young adults, and also older adults, are under that impression that if they're feeling well on medicine, they can just stop their medicine because their disease is fine now, they're cured. But that's not really the case. They're in remission because the medications are keeping them in remission, and most of the time when you stop medicines in someone who is in remission, they eventually flare.
Sarah Reilley: Taking meds for me now is just as simple as me having to go brush my teeth. I mean, it's just something that people with a chronic illness, they know that they have to do. It's part of the daily routine.
Faheem Johnson: "Always take the medicine," that's my motto. It's being paid for, it's expensive, this is not a game, and my health is not a game, and I already know how it feels to be really sick from this, and it can be even worse. And I don't want to be in those positions, so if someone's taking the time out to treat me and give me medicine, I'm taking the medicine. That's how I operate, and it's helping so far, and why not take something that seems to be helping?
GI Patients Moving to Adult Healthcare: Asking Questions
Faheem Johnson: Don't be afraid to ask a question. I definitely — me and my mom, we're not afraid to ask questions if we don't understand.
Keyshla Torres: So yeah, I would advise to not be scared to ask for the help that you need, to not be scared to ask the questions that some people have in mind but don't ask it, because then you wonder, "Should I ask it or should I not?" Just ask it because it could be a big help.
Robert Reilley (Sarah’s dad): I think the best advice I could give to a parent that may be going through the same thing, whether it's anywhere, would be to ask questions. Ask as many questions as possible, and don't give up until you get the answers that you're looking for. If one person can't answer it, then ask somebody else. There are many people in this industry that can help, and it's just a matter of asking questions until you get the answer.
GI Patients Moving to Adult Healthcare: Staying Positive
Maggie Baldwin: I've never been too worried about my health. I try to keep a light mind about it.
Faheem Johnson: I've always been hopeful that Crohn's is not going to be the thing that — not to say it ruins lives, but it's not going to stop me from trying to feel like I can do what I want to do.
Maggie Baldwin: I think that the most important thing about Crohn's is to not be worried about what's going to happen. You might get sick or you might be fine, but you just have to take it one step at a time, and eventually you will be OK. You'll go into remission, and you'll get through it.
Faheem Johnson: If you are sick, you can become a worrier. You can become very sad and hopeless, in some sense, about the future. But I try to remain a little optimistic and approach things a little differently and say, "I can do this." And if, God forbid, I do get sick, then I will handle it then, but I can't think about that right now.
Charles Rawlings: It's part of life. It's something you've got to deal with. It's part of life. All things is not smooth sailing. Everything's going to — some things are going to be hard and some things are going to be easy.
Sarah Reilley: You think it's the end of the world when you're a teenager, when you're in middle school and something — you have a bad day, but moving on from that, I mean, it gets a lot better, and I'm proof of that.
GI Patients Moving to Adult Healthcare: Your Future Is Bright
David Piccoli, MD: I think even from the very start of disease, we tell patients that we're going to get through it, we're going to make things better, that eventually there will be better and better treatments and even cures for many of these diseases. And I think with that forward-looking optimism, we also tell them that as we transition them to great adult doctors, we'll be able to continue that process.
Sarah Reilley: So I feel like right now, I feel like it's a wonderful time to transition because, like I said, there are so many great medications and treatments out there, and I can only imagine when I'm 30 or 40 and there might be, hopefully, a cure.
Keyshla Torres: Sometimes I even thought that I was going to have a short life because of this condition, and — I don't know. I guess I have to think future, future-wise. The choices that I make now will help me 5-10 years from now, and seen at that point, it's been helpful.
Anne Grant, MSN, CRNP: Young people these days have more opportunities and more resources that they can take advantage of and become whoever and whatever they want to be, and we're here to help you do that.
Mark Osterman, MD: I would say the positive thing about adult care is that you're sort of in charge of yourself. You have the independence, and you have freedom. You have the liberty to do for yourself what you need to do.
Charles Rawlings: I have 4 years being an adult. It makes me feel like, to be honest with you, it makes me feel like I have responsibilities, big responsibilities. And it makes me feel good that I have responsibilities.
Mark Osterman, MD: I think it's an opportunity to prove to themselves and to their parents and to the world that they can do this on their own, and they have — but they're not really on their own. They have us to help them, and they don't have to ever feel that they're on their own, but they can gain the confidence that they're finally in control of their own health.
Anil Rustgi, MD: Remember that we've been taking care of adult patients for a long, long time, and the principles are the same as they are for our pediatric and adolescent patients and their families. What's good for them, what's good for their families, how can we make their experience better? That's no different on the adult side than it is on the pediatric side. We're guided by those principles and applying them to patients in transition, so there's really absolutely nothing to be afraid of. We're here all the time to help out.
Related Centers and Programs: Division of Gastroenterology, Hepatology and Nutrition