Inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, and indeterminate colitis) is a disease of young people. When patients are diagnosed as children or teens, they are cared for by their parents and pediatric teams. The transition to taking care of themselves and moving to an adult gastroenterologist needs to take place with intention. Stacy Dylan, co-founder of Connecting to Cure and mom to a son diagnosed with severe Crohn’s disease, gives tips and tricks on making the transition easier. Plus: hosts Brooke and Amber talk about what makes them melt down while traveling.
Follow Connecting to Cure:
- Web: https://www.connectingtocure.org/
- Twitter: https://twitter.com/connecttocure
- Instagram: https://www.instagram.com/connectingtocure/
- Facebook: https://www.facebook.com/ConnectingToCure
Follow Stacy’s Medium page: https://stacyjdylan.medium.com
- Web: https://ibdmoms.org
- Facebook: https://www.facebook.com/IBDMoms/
- Twitter: https://twitter.com/ibdmoms
- Instagram: https://www.instagram.com/ibdmoms/
- Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney
- Theme music, “It Started With a Hashtag,” is from ©Cooney Studio: https://michaelandrewcooney.bandcamp.com/
[MUSIC: It Started With a Hashtag]
Brooke Abbot (00:05):
I’m Brooke Abbot.
Amber Tresca (00:06):
And I’m Amber Tresca. And we’re the co-founders of IBDMoms. We’re moms and inflammatory bowel disease patients and we’ve created a safe space for other moms with Crohn’s disease or ulcerative colitis to share their journeys with one another.
Brooke Abbot (00:19):
The IBDMoms Podcast will focus on topics such as body dysmorphia, sex and intimacy, how to parent through a flare up and transitioning kids from pediatric care to adult care.
Amber Tresca (00:31):
Thanks for being with us. We are here to help moms on the challenges they face on their journey through motherhood and chronic illness.
Amber Tresca (00:42):
Brooke Abbot (00:43):
Amber Tresca (00:45):
We had our friend here to have a conversation with us about transitioning care from pediatric to adult.
Brooke Abbot (00:53):
Yes, which is such an incredibly important topic just because no one really talks about it, but it is a thing and it’s absolutely necessary. And I feel like it’s one of those topics where everyone’s kind of thinking about it but not talking about it. So I’m glad that she came in and sat down with us for a little bit.
Amber Tresca (01:16):
Yeah, so our friend Stacy Dylan of Connecting to Cure Crohn’s and Colitis, she has a child that lives with IBD and he’s now a young adult. So she is really in the middle of this process. And not only that, but she talks to a lot of other parents who are dealing with it as well. And so she was able to give us a firsthand account of how she’s dealing with it in her own family and then also how some other parents have thought about it and dealt with certain things and then have related that information to her.
Brooke Abbot (01:48):
This is just something that I think we as adult patients have all hoped that parents who have pediatric patients would have this type of resource. So we’re happy to bring it to you.
Amber Tresca (02:00):
Coming up next, Stacy Dylan from Connecting to Cure Crohn’s and Colitis.
Amber Tresca (02:12):
Stacy, thank you so much for sitting down with us and talking to us about the transition from pediatric care to adult care in kids. And I know that this is an important issue to you. Can you tell me why it’s an important issue to you?
Stacy Dylan (02:25):
Sure, sure. So I founded Connecting to Cure Crohn’s and Colitis and one of the reasons why I started it, well, the main reason was because my son Lowell, was diagnosed with Crohn’s when he was very young. He was two. He’s now 22. So we just had our 20 year anniversary of his diagnosis. And I would say about 10 years ago, my partner Dana Zatulove, who I started it with, decided we wanted to do more and be around for… Do more with fundraising for research, and then of course as our community started growing, we realized that there’s a need for more programs for patients and especially for caregivers. We really focus on caregivers.
Stacy Dylan (03:00):
So we have support groups and other programs that cater to the needs of patients and caregivers. And of course, as I’ve met more moms and parents who are dealing with kids at any age who are diagnosed, one of the big stress points can be when they’re transitioning from even before they have to maybe get an adult GI doctor, but just as they’re becoming teens or going off to college and they could be on a biologic medication that’s an infusion and where are they going to get that and how are they going to manage all of these things on their own?
Stacy Dylan (03:31):
So definitely as your child gets older, it’s something that you start thinking about and start planning for. So this topic is very important to me, myself as I’m in the process of doing that with my son, but also the people in our community that are dealing with this.
Brooke Abbot (03:46):
Stacy, when did you start prepping your child to start transitioning? Was there a time when you thought, “Okay, now we need to start kind of prep?” Or did it just happen naturally?
Stacy Dylan (03:58):
I think that’s a good question because I think our story might be a little bit different just because my son’s disease has been so severe, so he still lives at home with us. He hasn’t left and so he hasn’t had to deal with as many things on his own. But that’s not to say he already does deal with a lot. He already does deal with a lot of things on his own.
Stacy Dylan (04:15):
I feel like for me it was probably a little bit later, like more before he was turning 18 because I knew at that point I wouldn’t have access the same way that I did when he was younger because of just the privacy and HIPAA laws that doctors and other, even the insurance company and the specialty pharmaceutical company, they’re not going to talk to you unless he gives permission. So it was probably around then.
Stacy Dylan (04:38):
But I would say in terms of parents in general dealing with this, it really does depend on the age of your child’s diagnosis. So it is more common to be diagnosed with this maybe during that time when you’re an adolescent or before you’re an adolescent or 12 to 18. And so if the child is 16, 17, or 18 and getting diagnosed, they might already be prepared to deal with things on their own, meeting with a doctor who’s already going to be addressing them more.
Stacy Dylan (05:07):
But if you have a young child, mine, or there’s also a lot of families that I know that their kids were diagnosed that young or seven, eight, nine, the child is really not equipped and doesn’t understand. And so when the parent takes over, it’s sort of a natural thing to keep doing it. So for me, I think it was more something that I had to work on to give him the skills, to make sure I was giving him the skills to do this because I was just so used to doing everything.
Stacy Dylan (05:33):
And I think that one of the things that has been positive for us in our relationship is modeling. And I was talking to you a little bit about this Brooke anyway, in terms of just being a parent with your child and how to have them advocate for themselves. They see you doing it. When Lowell first had to stay in the hospital by himself, it was very anxiety provoking, more for me, but I was proud of him because I felt like he knew how to ask the right questions and say the right things. And if someone comes in and wants to do this or that, you can ask “Why are you doing this? Does it need to be done?”
Stacy Dylan (06:04):
And so I think that I tried to be a model of that for him because… And so I started thinking about it around his teens because I knew that he was going to be the one who was going to have to deal with this on his own. I think it’s important to be a model for your child in that arena. And it’s important to advocate for yourself and it’s important to show your child to advocate for themselves in any area. But if you have a chronic illness, it’s really important.
Amber Tresca (06:29):
Do you have parents that are struggling through this? For myself, I often stop and remember to teach my children certain things. I started taking them to the grocery store with me, which is very simple. This is something that you need to know, not for a few years yet, but you do need to know it because we’re so used to just doing these things and we’ve done it for so long.
Amber Tresca (06:51):
So how are parents working their way through that idea of, “Okay, I have to stop. I have to teach them how to do it.” And then also they may do it not wrong, maybe wrong-
Brooke Abbot (07:04):
Amber Tresca (07:07):
But they may also just be doing it in a different way. And as a parent you have to step back and just let them do that and maybe even let them make a mistake. So have you had to work through that or are there other parents that you know of, how do they work through that?
Stacy Dylan (07:20):
Yes. The stakes are higher when you have a chronic illness. It’s like, okay, your kid is off to college or in their 20s and maybe they haven’t gone to their dentist appointment. And it’s like, “Well, that’s bad. You have to take care of your teeth.” But when you have an IBD or when you have Crohn’s or colitis, it’s like you have to take your medication on the scheduled time. You have to follow up with your procedures or your doctor or whatever it is.
Stacy Dylan (07:41):
So it’s not like you can just say how when we all have kids, so it’s like, “Well, they’re going to have to fail and figure it out on their own.” But the stakes are higher. So that’s why, even in talking to other people who don’t have a child with a chronic illness, they don’t understand that it’s not as easy as just saying, “Let them fail.” Because you have to really be on top of these things.
Stacy Dylan (08:00):
I’d say from myself and from other parents I’ve talked to, they worry that their kid isn’t going to take their medication, whether it’s an injectable medication or if they have to get Remicade or even if it’s just an oral medication that they’re taking in their… They don’t know. So that’s compliance. Compliance with medication I think is one of the biggest concerns that parents have.
Stacy Dylan (08:21):
But that goes back to building this up in your child for them to take over. It’s not just about how are they going to do it on their own, it’s that they have to be invested in their own health. And there’s only so much you can do as a parent to get them to do that. But again, seeing you taking care of yourself, all of those things are really important.
Stacy Dylan (08:41):
If you ask me actionable things that parents can do in terms of getting their child who has IBD to be more independent is very simple things that you might not even think about, like make sure they have their doctor’s phone number in their phone, you know what I mean? And they know the protocol of how, or if they can get in touch with them on the portal. Make sure they are on their portal and can look at their medical record or contact their doctor on their own if they need to.
Stacy Dylan (09:08):
These things seem like small things, but as we’re talking about with kids in general, we need to break it down to the smallest step. I would say that’s one of the first things, having their picture of their insurance card in their phone so that when they’re asked about that, that they can access it because they’re not going to be fumbling around finding it or they’ll call you and say, “Where’s my insurance card?”
Stacy Dylan (09:31):
And then the last thing I want to say about that is, when the child does turn 18, it is really nice if they will allow you to still be involved. My son was like, “Yes, sign things. You can talk to whoever it is.” But some kids don’t want that and so that’s okay too. But it is beneficial to them because, like I mentioned, my son still wants me to help him deal with health insurance and getting his specialty medication.
Stacy Dylan (10:00):
There are a lot of things he does on his own. He’ll email the doctor on his own. He’ll make a doctor’s appointments on his own. He’ll go to the regular pharmacy on his own. But there’s things that they don’t make it easy, as you guys probably know, all the insurance and the pharmacies. So he still is asking for my help for that. So it’s nice that I don’t have to every time call and have them… It’s a pain. They talk to him, but he has to sign something saying it’s okay.
Brooke Abbot (10:28):
Your suggestion of taking a picture of the insurance card kind of triggered something. I’m the patient, my child is not. And so I’ve always tried to make sure that he has had all the tools just in case something has happened. And I started creating very in depth contacts in our address books on our phones. So he has all of his information and I share it back with him and I’ve shared my contact card in there with him. And that has, just in case anything happens, it has my information, my medication, my insurance information, his insurance information, his school ID, all of that information.
Stacy Dylan (11:11):
And it feels better to me now that he’s going out more with his friends and he’s doing other things to be able, I just know that he can look in his contact sheet and he’s got all the information. And I also feel like, like you said, that’s kind of baby stepping them towards this avenue of independence. They’re always going to need their mommies, just any kids listening, I just want you to know you’re always going to need your mommy.
Stacy Dylan (11:36):
That is, I attest to that. It’s true. Yes.
Brooke Abbot (11:39):
I cannot stress that enough.
Stacy Dylan (11:41):
Brooke Abbot (11:42):
But it is important and it feels good too to be able to know that you know that your kid is safe and they feel confident and comfortable. We just recently went to a doctor’s appointment and they asked for Jackson’s medical record number and he pulled out his phone and was like, “Oh, I’ll do it mom.” And I’m like, “Yeah, you’re getting there.” It’s so important, especially when you’re dealing with the chronic condition, you just feel, you want your kids to feel safer.
Stacy Dylan (12:13):
Brooke Abbot (12:14):
Stacy Dylan (12:14):
But it sounds like he felt empowered. And I think that’s another thing is for them to feel like empowered. It makes them feel empowered, even those little things. I know Lowell feels better, he’ll be like, “Well, I did that on my own,” or “I made this appointment already.” Sometimes I go with him still if he wants me to an appointment or not. But it definitely makes him feel better being able to do some things on his own. And people in the IBD space know that every patient is different. Every patient has a different severity of disease, different amounts of time when they might need to go to an appointment or check in with their doctor.
Stacy Dylan (12:45):
So Lowell’s tends to be pretty severe at some points and so we do have a list of all of the different doctors and all of the different ways of contacting them. And so we both can do that. And I will say to him, “Do you want to do this or do you want me to do this or are you going to send them a message on the portal? Do you want me to help you?”
Stacy Dylan (13:03):
So it’s a conversation, but I do think that when your child is getting ready to maybe go away and leave the house, that having actionable items and there is going to be some failing. You know what I mean? And hopefully it won’t be the biggest mess up for them, but they are going to have to figure it out on their own. They are going to have to figure out how to go to college and find a place where you can get your infusion or if you still need help getting your injections. And it’s possible to do those things. And I know a lot of parents who have done that.
Stacy Dylan (13:36):
I just want to say one other thing about when you said things that parents are concerned about. Another thing, and this is important for them to talk to their doctor about is, if you’re going to college or even high school and you’re starting to drink or that’s a really important conversation because there are medications that it’s really not okay to have substances that are not prescribed interact with them. So parents have a lot of concern about that, I would say.
Amber Tresca (14:25):
Yeah. And here’s something in talking to physicians and parents and addressing this issue is the idea of when the parents starts to step away. And we are talking about young adults 18 plus, that even if you are still involved in their care, there may be issues for which your child, who is your adult child, may want privacy for certain things, which is totally understandable and makes sense. Drinking would be one. Sex might be another. I’m sure there’s more. Should the parents offer to leave? Should the physicians take the lead in that? At what point does there start to be an even more pronounced separation because there needs to be?
Stacy Dylan (15:13):
I kind of think the physician should take the lead in that, because there might be a kid or a teen who will say that, who will say, “I would like to have some private time with the doctor.” But I don’t think it’s that common. And I do think the physician, especially an IBD physician, should have that conversation. Or when you’re in the appointment say, either just say, “I’m going to talk to the child alone,” or “Can your parents step out right now to do this?” Or just make it a thing like they have to. I really think that is important. I think you guys will see, even maybe with the child’s pediatrician, they’ll start doing that I think, if they have already.
Brooke Abbot (15:48):
Yeah, that was definitely… Well, I just had that recently.
Amber Tresca (15:51):
Yeah, it just happened recently.
Brooke Abbot (15:53):
It just happened and it was so jarring because I do believe in privacy, but I think that I’ve just been on automatics. So when the physician looked at me and he’s like, “Mom, do you mind stepping out?” I was like, “Does someone need water?”
Stacy Dylan (16:09):
Right. Do you need something? Snack?
Brooke Abbot (16:13):
What does he need?
Stacy Dylan (16:13):
Is there some surprise or something happening?
Amber Tresca (16:13):
You know what though, I didn’t know it was coming. Okay, no, I knew it was coming. I didn’t know it was coming that day. So it was little like, “Okay, you need your space or whatever, but this is weird for me to be sitting on this little bench in the hallway while you’re in the appointment.”
Brooke Abbot (16:32):
Stacy Dylan (16:35):
I know you’ve spoken to some doctors or you’re going to be speaking to some physicians about this. And I think that that is something that the doctors should initiate, especially if they are going off to college. Because it’s a very important conversation to have in terms of the medications and the drugs, sex, whatever it is, it’s important.
Brooke Abbot (16:53):
But I remember being that age and having, it might have been my third or fourth gynecologist appointment and I was very… My mom just got up and walked out. She didn’t even… And I was very grateful for that because even though I was very communicative with my mom and could talk to her about things, I didn’t want her to think that I needed privacy because I was doing something that she wouldn’t agree with.
Brooke Abbot (17:25):
But at the same time, I did want to talk to the doctor without my mother’s, not necessarily influence, but just her input. I just wanted to have a conversation with another adult. And before I could… I was very grateful, before I could even say anything or the doctor could say anything, my mom was like, “I’m just going to step out for a minute and let you guys chat.” And that was it.
Stacy Dylan (17:45):
I think that’s a good point. I think that’s really good point. I think for parents, for them to be thinking of that as their child’s getting older and they’re going to these appointments. I think I’ve done that with my son, but more in maybe therapeutic settings or when we’ve maybe been talking to a therapist or someone together and I’ll ask him, “Do you want me to leave? Do you want me to stay?” But I think it’s actually pretty good to just say, “I’m going to leave.” Because you don’t have to have them… If they feel like, “Oh my God, I’m going to offend her. I don’t want her to feel…” So I think that’s a good point to bring up that the parent can start thinking like that as well.
Amber Tresca (18:17):
Yeah, even as an adult patient, sometimes it’s just helpful to have someone else in the room to remember or to ask questions or to think of things that you’re not thinking of. But that’s not really necessarily the reason. It’s because they’re adults and they’re going to have their own lives and they’re going to do things that we disagree with. But also I kind of like you want that a little bit.
Brooke Abbot (18:43):
Amber Tresca (18:44):
And maybe that’s goes in with making the mistakes and hopefully it’s not a mistake that sets off a flare up.
Stacy Dylan (18:50):
Yeah. But I’ve also talked to parents where their kids have done that, like they’ve missed their medication by a week and then they start feeling bad. So it’s not going necessarily going to have these terrible consequences. As parents, we think that, but those missteps are going to happen with any kid, but especially with a chronic illness, they are going to do something that’s not like the way you would do it.
Brooke Abbot (19:12):
It happens with adults. There have been times when I’ve looked up and been like, “Oh, I need to go pick up that prescription. I am two days late on that.” Because also just dealing with the chronic condition is just, there’s so much that goes into it. But I also feel like when you feel like your parents trust you, you act a little bit differently. I always felt like my mom trusted me. I felt comfortable with that, but also I was focused on being a little bit more responsible because of it.
Amber Tresca (19:43):
You were wanting to earn it.
Brooke Abbot (19:45):
Amber Tresca (19:47):
You don’t have to earn it. It’s given to you.
Brooke Abbot (19:50):
Right. But I wanted to.
Amber Tresca (19:51):
You wanted to behave in the way that she knew that you were behaving in a way she would prefer.
Stacy Dylan (19:57):
I think that’s an important point actually for parents and even for the physician to put that confidence in that helps with their confidence. So when you’re telling them about something or describing something that you do for them, maybe it is doing the refill to the pharmacy, just doing it in a way that you know that they’re going to be able to handle it. So it does give them confidence and it just builds up.
Stacy Dylan (20:19):
So when you asked the question before when to start doing that, I think there’s really no too young of an age to start doing it. It’s based on your child’s maturity. 12, 13, they could start doing little things. And then also I think it’s important, I don’t know if we touched on this, but for the physician who’s dealing with this population to really be talking to the patient just as much as they’re talking to the parent, but address the patient and allow the patient to answer some of their questions as they’re getting older that they always ask and not having the parent jump in all the time.
Amber Tresca (20:53):
That’s a thing, the uncomfortable silence sometimes with the… My kids don’t live with an IBD, but their pediatrician talks to them. And it has been an exercise in patients for me to sit there and not try to answer or prompt or anything and just sit there and let my kid answer the question. Because what’s going on in the back of my mind, “We have 15 minutes for this appointment. You need to get this out. We need to keep this moving.” And that’s my own bias. And so but I do try to sit-
Brooke Abbot (21:23):
And you’re missing details. My kid will actually look over at me because he’ll say something and I may just have my resting mom face like, “You miss something.” I’m sorry, but you definitely had that double cheeseburger for sure.
Stacy Dylan (21:35):
Yeah. Yeah. Yeah. Yes.
Amber Tresca (21:38):
Well, usually with my kids it’s usually they leave out their accomplishments. The doctors will want to know them as people. And here’s the thing too is I think we want to go in as patients and be like, everything’s good and everything’s fine and we want to make our doctors happy in some kind of weird parental way there. So what do we do about that? What do we do when the kids are, or adult children are resisting taking over or are resisting being forthcoming? How can we support them in that? Is that on the parents? Is that on the physician? Both, maybe?
Stacy Dylan (22:14):
Yeah, I think that there is some pain points. I’ve definitely had that with my son where I don’t feel like he’s giving the information he should be, or he is not contacting the doctor in the timeline that I think he should be. And so even as I’m talking about this, I’m realizing yeah, there are things that I’ve had to let go of, even with his chronic illness being so important to be on top of. But I have had to let go of some things. Like if the doctor was saying, “Well, maybe we should try looking at this diet or this food or whatever.” And now it’s like he doesn’t want to do it. If he wanted to maybe try to feel better, I’m not sure if it’s going to make him feel better or not, but it’s like there are things that he has to be invested in on his own.
Stacy Dylan (22:53):
And I think that as parents, I even tell parents of younger kids, especially when they’re talking about diet, I say, “Some kids will be amenable to these big diet changes and it’s not going to be so disruptive. But some kids, it is going to be very disruptive and you have to weigh that out in terms of how much it’s actually going to disrupt your family life, relationship, their friends.” It’s not like, we always think, “Oh, well, we have to try this diet because it’s going to help their health” and it doesn’t at all cost, but no, that’s not accurate. You know what I mean?
Stacy Dylan (23:21):
It’s like, what is the other cost of it? And without really knowing if it’s actually going to help. Obviously there are times when you have to do certain things with eating certain things, but when it’s just something like that, it’s not just simple. It’s like you have to look at all the other aspects of it as a parent.
Amber Tresca (23:40):
The fight may be more than the benefits that you might or might not receive. I think knowing that, and sometimes kids are just not going to do a thing. They’re just not going to.
Brooke Abbot (23:53):
They’re still people. Listen, my doctor tried to convince me to stop drinking coffee. It ain’t going to happen.
Stacy Dylan (23:58):
Amber Tresca (23:59):
Well, why would someone tell you to stop drinking coffee?
Brooke Abbot (24:01):
I feel like sometimes he tries it just to see how far he can go. That was too far.
Amber Tresca (24:07):
Yeah, that was too far.
Brooke Abbot (24:08):
Stacy Dylan (24:11):
I get that. I get that.
Brooke Abbot (24:13):
So I can totally get it. Being 13, 14 and someone saying, “No, you can’t have fries.” No. No.
Stacy Dylan (24:19):
Or you’re going to go to this birthday party and you’re not going to eat the pizza or the cake.
Brooke Abbot (24:25):
Stacy Dylan (24:26):
Again, some kids are like, “Okay.” Or they get it, they do it for a couple days and they start to feel better. And then maybe that if it happens, it’ll motivate them. But not every kid is like that. And we have to work within your family, within your child’s, what their personality and how your relationship with all of that.
Brooke Abbot (24:43):
Amber Tresca (24:43):
At what point should the doctor initiate that conversation about when they should be transitioning and what they should be thinking about for the future of their care?
Stacy Dylan (24:53):
Another important thing in terms of the transitioning, whether they’re leaving the pediatric doctor and going to an adult doctor or not. And if they are going to switch, they have to be part of that process. If they want you to be involved in meeting or interviewing a doctor, then that’s important. A lot of the pediatric doctors will see kids until they’re 21 or older. So that’s a conversation that you have to have about how long they want to be in this doctor’s care.
Stacy Dylan (25:17):
But then I think if they’re leaving or going off to college or going on a trip in high school, whatever it is, that the doctor actually lets the child or adolescent or young adult know what their requirements are. Like you need to have this appointment with me. Make sure you have this amount of medication with you. So it’s important for the doctor to have that conversation with the patient.
Amber Tresca (25:37):
As the co-founder of Connecting to Cure, you’re working in the IBD space, you’re helping patients and families and children and parents. Can you tell us more about your foundation and then let us know where we can follow you?
Stacy Dylan (25:51):
Sure. So originally, I think I mentioned this, originally we started Connecting to Cure Crohn’s and Colitis because we wanted to be able to have a grassroots organization that raised money for IBD research. Because at the time, me and my co-founder had younger children and we were worried about their future and we wanted to make sure that the research that was being done could still be being done and could be very robust. And there was a lot of money to support that because we all know research costs a lot of money.
Stacy Dylan (26:17):
We also wanted to have an event and a way for our friends and family to participate and help us because so many times they’d be like, “How can I help you?” If my son was in the hospital or whatever it was. And there were things that they could do at those times, but I think that really when we started doing our events and fundraising, people really do feel good about what they’re doing by supporting us and they feel part of our community. And I did notice that that really helped. And they are helping and we value anyone who donates, anyone who volunteers or anyone who wants to be a part of our community.
Stacy Dylan (26:50):
And then another big part of what we do now, and even more so since the pandemic, because people with IBD were maybe more a little trepidations about going out. Of course we all were, but some patients are still very concerned about it and we don’t know exactly, the jury’s out on how COVID is affecting people differently. But our community was growing before that. But now it’s very strong in terms of the support that we can offer, either peer-to-peer support. We have a mentor program for, and this can apply to the topic that we were talking about, is that if you have a child who is starting to transition and there’s like a older teen or young adult who’s already gone through that, we can pair them up.
Stacy Dylan (27:31):
We have a mentor program for older patients and teens to pair up with younger kids who are newly diagnosed or going through a transition. We have our patient support groups, we have caregiver support group. We partner with another organization, the Crohn’s and Colitis Young Adult Network to do a sibling support group and also includes children of parents who have IBD. And we have an IBD workout that we offer every week.
Stacy Dylan (27:54):
And we also are just available if anyone needs to reach out to us. And then of course, like all IBD organizations, like both of you have, we want to raise more awareness about these diseases so that we can bring more resources to all the patients who are really suffering and the families who are affected by this disease, these diseases I should say.
Amber Tresca (28:13):
Yeah. So where can folks follow you?
Stacy Dylan (28:16):
Our website is connectingtocure.org. We are on Facebook, Instagram, and Twitter at Connecting to Cure on Instagram and Connect to Cure on Twitter and Connecting to Cure Crohn’s and Colitis on Facebook. Not on TikTok yet.
Amber Tresca (28:29):
Us neither. Us neither.
Stacy Dylan (28:32):
I’m like, I don’t know. Yeah, yeah.
Brooke Abbot (28:33):
We just need to do a cool mom’s TikTok. I’m obsessed with this cool moms [inaudible 00:28:38] because the children, they don’t think we’re cool, but we are. We are super cool. Stacy, it’s been amazing. Thank you so much for coming and sitting with us and chatting with us. Appreciate it.
Stacy Dylan (28:49):
Thank you for having me. It’s been, I love you guys and I’m glad anytime I get to talk to you guys about anything, and I’m especially honored to be on this podcast and to help you guys with what you guys are doing with IBDMoms.
Jaxon Honeycutt (29:07):
Hi. This is Jax, and you’re listening to my mom, Brooke Abbot and my aunt, Amber Tresca on the IBDMoms Podcast. Just because I don’t listen to her doesn’t mean you shouldn’t.
Amber Tresca (29:24):
Brooke, I think you need to have a mommy meltdown.
Brooke Abbot (29:28):
Oh, I’ve had one, maybe two since I’ve been here in San Diego, but I had one. First day, landed, five minutes into the trip, totally irrational. This is probably the most first world problem I think I’ve had in a long time. But you know what grinds my gears? I mean, really.
Amber Tresca (29:49):
No, but I think you’re going to tell me.
Brooke Abbot (29:51):
Ooh, just gets me into a tizzy. When I look at a menu and I decide on something and then the waiter tells me that it’s not available and has not been available for months. Why is it still on the menu? I walk into, where were we? We were at some restaurant. Walked in there, I’m looking at the menu and these little tiny bite size crab cakes, they jump out at me. They were like, “Brooke, this is what you want to eat right now.” And I was like, “Yes, this is exactly what I want to eat right now.”
Brooke Abbot (30:25):
So I get my whole order together and I look at the waiter and I go, “Can I have the tiny crab cakes?” And he goes, “Oh, I’m sorry, we’re out.” And I’m thinking he’s going to say, “We’re out of them today.” He said, “We’ve been out of them for two months.” Why are they still on the menu? That’s just my problem. I just really don’t like that.
Amber Tresca (30:54):
I feel like there should have been a sign at the door probably.
Brooke Abbot (30:57):
Or when you hand the menu say like, “This is what we’re out of.” There’s just a little extra communication that I feel is necessary that people, I just don’t like if you know that something’s not there, don’t wait for me to ask for it. You just wasted my time. And I’m also craving-
Amber Tresca (31:18):
And now I’m mad.
Brooke Abbot (31:19):
I’m mad and I’m craving crab cakes, which I never really crave, but now I’m craving them more and more because I could not have them.
Amber Tresca (31:26):
We’ll have to get you some later. I feel like this happened though again at Starbucks today, right?
Brooke Abbot (31:31):
Oh, it sure did.
Amber Tresca (31:31):
And I am going to call out Starbucks because I don’t care.
Brooke Abbot (31:34):
For sure it did. For sure it did. Walk in, it’s a full on conference. They should have all the drinks that they need to have in order to fulfill the actual drinks. Blonde espresso is a thing for me because it’s a lighter espresso, it’s got a little more caffeine, but it’s just not as harsh on my belly. I walk up there, I’m all ready to have my nice frothy caramel macchiato. I needed coffee. The day started off kind of rough. No blonde espresso. None. Absolutely not. It was a tragedy. It was a pure Shakespearean tragedy because then I had to have the regular espresso, and now I feel like I have rocks in my stomach. So thanks a lot, Starbucks. I got rocks in my belly because, well, that’s probably not the reason, but I’m blaming it on that because I’m very upset.
Amber Tresca (32:30):
Well, you know what? I would just like to point out that Occam’s razor, probably the simplest explanation is the one one that is applicable.
Brooke Abbot (32:40):
Amber Tresca (32:41):
And you drank that coffee and then you started feeling this way. So I feel like that’s right. And I don’t think that they’re ever going to be a sponsor, so I’m not too concerned about…
Brooke Abbot (32:51):
I’m not concerned. And let’s be honest, I’m going to continue to drink it. I’m just mad. I’ve got a little fury right now.
Amber Tresca (33:02):
Yeah, you just needed a minute to get it out.
Brooke Abbot (33:04):
I just need… Here’s the thing, as a mom, we don’t always get what we want or have the time. So when I go to a restaurant or a cafe, I just need that one thing to happen because that may be my only escape for motherhood. And I just want to live in the crab cake and blonde espresso dream. And that didn’t happen for me this weekend. And yeah, thanks a lot.
[IBDMoms Transition Music]
Brooke Abbot (33:43):
Well, we just want to thank Stacy Dylan from Connecting to Cure Crohn’s and Colitis for coming on the show and talking about how to transition your pediatric patient to adult care.
Amber Tresca (33:54):
Transitioning to adult care can be a little rocky, and Stacy really has been through it all.
Brooke Abbot (34:00):
Stacy’s a rockstar and we love you, Stacy.
Amber Tresca (34:02):
You can follow Connecting to Cure Crohn’s and Colitis on Facebook, Instagram, and Twitter, and on their website connectingtocure.org.
Brooke Abbot (34:12):
Guys, we made it to episode two. Links to a written transcript, everyone’s social media handles, and more information on the topics we discussed is in the show notes and on the episode two page on ibdmoms.org.
Amber Tresca (34:26):
You can follow us across all social media as IBDMoms.
Brooke Abbot (34:31):
IBDMoms Podcast is written, produced, and directed by the IBDMoms, Amber Tresca and me, Brooke Abbot.
Amber Tresca (34:38):
Mix and sound design is by Mac Cooney. Theme music is from Cooney Studio.
Brooke Abbot (34:49):
Let me just flow it out. Okay.
Amber Tresca (34:49):
Brooke Abbot (34:49):
Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay.