Transition to Adulthood with a Chronic Illness: Growing up

Transition to Adulthood with a Chronic Illness: Growing up

Maggie Baldwin: For a while there, I was thinking that I was just going to be stuck in the hospital for months at a time, and when I got the ostomy, everything changed. An ostomy is where they take your small intestine and split it from your colon, and then they take that small intestine and bring it through your abdominal wall. So then you put a bag on it, and that's how you go to the bathroom.

Jeff Baldwin (Maggie’s dad): She's blunt and straight and to the point, so she just tells her friends, "This is what it is, and this is how it works, and this is what I have to do because of my Crohn's disease."

Maggie Baldwin: I was worried when I first got the ostomy, thinking that I couldn't do everything I had been able to do before, and it turns out I can do everything the same. I go to swimming, I play soccer, I play guitar. I've been doing everything the same. I just find different ways to do it.

Jeff Baldwin (Maggie’s dad): That's not the perfect situation for a 17- or 18-year-old girl when she's worried about boyfriends and problems and all the rest of it, and Maggie's managed to do all that stuff in spite of it.

Maggie Baldwin: Well, at prom there was a lot of dancing and lots of dresses which I got to wear my pretty red dress and went to Ocean City afterwards with my friends, and there were about 25 people in our house, and it was very crowded, but we all went to the beach, and we went to the boardwalk, and we all just hung out. It was really fun. I don't know what I can say on camera.

GI Patients Moving to Adult Healthcare: Being Smart About Drinking and Drugs

Sarah Reilley: I definitely shouldn't be drinking and going out and stressing your body out, especially with the meds that you're on and the treatments that you're taking, but if I felt fine that day or I'd been feeling fine, I would go out and maybe have a couple drinks, but not to get excessive.

Maggie Baldwin: Yeah, I have a lot of friends who drink, and that was one of the main things at the shore house. There was a little pressure to drink, but I said no anyway because I care about my ostomy and my Crohn's disease, and I really don't want to get sick.

Petar Mamula, MD: I think once they're 17, 18, for a variety of reasons, be it peer pressure or some others, they're in situations where they have alcohol available, and they want to know if that will affect their disease.

Sarah Reilley: It's definitely not great with the meds you're on, but it's definitely a reality.

Faheem Johnson: When things like drinking or drugs or anything like that was around me, in a sense of friends or people talking about it, I was never — I think a lot of people got a sense of my personality or who I was or what I believed in or some of my values, if you want to call them that, and I just told them, "No, I don't — I'm not interested in doing it."

Sarah Reilley: I was never pressured. I mean, I had a very good group of friends at college, and they never said, "Oh, you need to come out and drink with us." And if I said no, then they said, "Ok, that's fine."

Faheem Johnson: I think it depends on who you are around and who you're talking to, and luckily, the friends or the people that I associated with, you know, were like, "Oh, you're weird,” or "What is that?" No one ever — I was never outcast or anything like that.

Susan Peck, MSN, CRNP: Many of them have already had the conversation about "You can't do it, you shouldn't do it, yada yada yada." And that goes in one ear and out the other.

Anne Grant, MSN, CRNP: What young people need to know is that providers aren't nosy for the sake of just finding out how much you drink. They're really weighing it into your care.

Ritu Verma, MD: It's not just a social "Don't drink", but it's actually going to affect your disease process itself.

Susan Peck, MSN, CRNP: It's just, "Be smart, make smart choices."

GI Patients Moving to Adult Healthcare: Being Smart About Dating 

Maggie Baldwin: Having Crohn's really hasn't affected my social life. Like I said, my friends are very understanding, and dating, like the guys are very understanding too.

Sarah Reilley: My current boyfriend I'm with now, I've been with him 4 years. I met him in college. I met him right after I had my third surgery, so that was right after I was pretty sick for a while.

Keyshla Torres: When I met my husband 3 years ago, I ended up — it took me almost 8 months to tell him that I had colitis. He was always wondering, why did I have to use the restroom a lot? Why couldn't I eat a lot of stuff that they would eat? And it came to a point that I ended up telling him, and he was, like, really supportive.

Faheem Johnson: Other people I dated, I kind of just told them, "Yeah, I take medicine, and I have this disease, and that's about it." They were like, "Oh, yeah, you know."

Sarah Reilley: It is something that I do bring up, but not until I'm, I guess, serious with that person. I mean, I do mention it, I do say, "I do have Crohn's, and if you have more questions, I will certainly answer them." And whatever they need to know I will let them know. And so, if they want to stay, they stay. If they don't, then they're no good for me.

GI Patients Moving to Adult Healthcare: Pregnancy and Transition to Adult Healthcare

Petar Mamula, MD: If an adolescent or a young adult becomes pregnant, then most of the time, that is the actual time when the transition needs to take place.

Ritu Verma, MD: When you know you've become pregnant, your body is changing. The way the medications interact — so you have not just the child who's become pregnant that you have to think about, but you have to think about the unborn child as well.

Petar Mamula, MD: The majority of us pediatric sub-specialists do not have the necessary experience in treatment of certain conditions in pregnancy just because we don't see it very often, so the transition process sometimes needs to be sped up a bit in order to get in the right gear.

GI Patients Moving to Adult Healthcare: Being Honest With Your Care Team 

Anne Grant, MSN, CRNP: I encourage young people to have a discussion with their new provider if they have things they're concerned about in terms of if they want to say that they're sexually active or they have an alternative lifestyle that they're concerned about impacting their health in some way.

Charles Rawlings: When you get a certain age, 18, you're going to be seeing an adult doctor, and they're going to be talking to you about you know, grown-up stuff.

Mark Osterman, MD: They should feel comfortable in talking to me about anything. I'm not there to judge them. I'm not there to be their parent, to yell at them. I'm just there to tell them what we know medically about how things are and what I think might be safe for them and how much they can push their limits and to be just sort of like an advisor, kind of a watchful protector over them instead of someone who's just going to yell at them and tell them what to do.

Farzana Rashid, MD: They should be able to openly and honestly communicate with the providers about everything in their life because everything in their life does play a role in their medical care. As long as the patient finds a provider that they can do that with, they should be set.