AIBD Podcast Episode 129
Caitlin McGinnis, LCSW was diagnosed with ulcerative colitis at the age of 22 and had her entire colon removed. This experience prompted her to become a social worker and specialize in providing mental health support for patients with various digestive health issues. Through her own experiences and connecting with support groups, Caitlin has learned the importance of creating communities, bringing awareness, and being a source of support for those going through similar struggles. She strives to provide her patients with the support she did not have when she was diagnosed.
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Find Caitlin McGinnis, LCSW on:
Concepts discussed on this episode:
- United Ostomy Associations of America Support Group Finder
- Crohn’s and Colitis Foundation Support Groups
Find Amber J Tresca at:
- AboutIBD.com: About IBD
- Verywell: Verywell Health
- Facebook: @aboutIBD
- Twitter: @aboutIBD
- Pinterest: @aboutibd
- Instagram: @about_IBD
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- Instagram: @maccooneycomposer
- Web: Cooney Studio
- Theme music, IBD Dance Party, is from ©Cooney Studio.
Episode transcript and more information at: https://bit.ly/AIBD129
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[Music: IBD Dance Party]
Amber Tresca 0:00
I’m Amber Tresca. And this is about IBD.
Amber Tresca 0:08
I’m a medical writer and patient educator who lives with a j-pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.
Amber Tresca 0:21
Welcome to Episode 129.
Amber Tresca 0:23
Managing your mental health is an important part of living with IBD. There’s a spectrum of providers who can help, but there’s one specialty that you may not know much about, which are social workers.
Amber Tresca 0:36
My guest is Caitlin McGinnis, a licensed clinical social worker who provides individual counseling and health coaching in her private practice. She brings a welcome perspective to her patients living with chronic illness because she was diagnosed with ulcerative colitis and now lives with a permanent ostomy.
Amber Tresca 0:53
Through her own experiences and connecting with patient advocacy groups, Caitlin has learned the importance of creating community and now she works to provide her patients with the support she did not have when she was diagnosed.
Caitlin helps us understand the role of clinical social workers. I think she makes the case for more people who live with chronic illness to consider not only attending but also running a support group or even pursuing a career in social work themselves.
Amber Tresca 1:24
Caitlin, thank you so much for coming on About IBD it’s great to meet you.
Caitlin McGinnis, LCSW 1:28
Thanks, Amber. Thanks for having me.
Amber Tresca 1:30
I wonder if we would start first by you introducing yourself and maybe give a little background?
Caitlin McGinnis, LCSW 1:36
Sure. So I’m a licensed clinical social worker. And my role is really to provide brief therapy and counseling for patients who are experiencing symptoms of anxiety, depression, stress management and relaxation techniques.
Amber Tresca 1:51
What led you into this work? Sure.
Caitlin McGinnis, LCSW 1:54
So I was actually diagnosed with ulcerative colitis when I was 22. So my diagnosis was fairly quick, because my mom also has you see, and I was pretty sick for about a year and a half, I was on the usual medicines. And those medicines weren’t working for me. So I had a surgery and ended up having my entire colon removed, and I now have a permanent ostomy bag.
Amber Tresca 2:19
Your experiences as a patient must really be so helpful as you’re helping patients through that journey. Do you often share with patients about your own experiences? And how does that make them feel when they’re working with you?
Amber Tresca 2:34
Yeah, so that’s a great question. When I was in the hospital, I had a great team. But I never really had any mental health support, and someone in their early 20s going through college and now adjusting to everything I had been through, I noticed there was really something missing. And it was really kind of a hard time for me. So now when I meet with patients, I don’t tend to do a lot of self disclosure.
Amber Tresca 2:58
However, if I am meeting with a patient who maybe has a new ostomy bag is and is having a very hard time adjusting. At that time, I will self disclose that I too, have an ostomy bag. And I don’t say too much about my own experience, because I don’t want to make it about me, it’s really me supporting them. But I have noticed that people really resonate with that. And, you know, it kind of shows that I’m also human and I have been through this. And I can somewhat relate even though our stories are different.
Amber Tresca 3:29
So I’ve gotten really good feedback from disclosing that to people. And I’ve noticed some sometimes the, the walls go down, and they are able to ask more more questions and feel more comfortable.
Amber Tresca 3:41
I think there’s just a understanding that comes only after you’ve had that kind of a surgery, and only after you’ve lived with an ostomy. And I only had one for a blip. It was three months. So I don’t claim to have any expertise in that. But I think that I would have much preferred having someone on my team that had already been through it.
Amber Tresca 4:04
Like I had a wonderful team, but there was really nobody to talk to who was a young person, I was 26 Actually, the only people that they did send to talk to me were a lot older. And so that was okay. They were nice people, but they weren’t young women who were looking to get married and start a family and, and things like that. So I think it does absolutely add a different dimension to to your work.
Caitlin McGinnis, LCSW 4:31
Yes, it definitely does. And I can completely relate because when I was in the hospital, and I had a month that was in the hospital for a month a sick until the surgeon came up and kind of had this conversation with me. And I remember going on a website called J pouch.org. Because originally I had a J pouch and the ostomy was supposed to be temporary. And that was really the only type of resource at that time and this was only 10 years ago or so but that was the only support that I had.
Caitlin McGinnis, LCSW 5:01
And also everybody else that I had reached out to were people older than me and kind of different circumstances. So yeah, that was when it really clicked for me that this is definitely a need. And I mean, social media has definitely improved that over the years, there’s a lot more young people on social media with ostomy bags with UC, Crohn’s that are talking about it and bringing more awareness to it, which is great. But again, back then, it was very limited. And so really just having someone to talk to that they’re like, oh, yeah, you get it? And I’m like, Yeah, I do it. It just it can make a world a difference for people.
Amber Tresca 5:37
I think I would say it eliminates a whole lot of things that you like, you don’t have to talk about, because you already both understand so much. So you can just sort of like cut to the chase. Like, you don’t have to go through the basics, I guess.
Caitlin McGinnis, LCSW 5:50
Right? Yeah, they don’t have to sit there and explain the whole surgery and everything because I know what it is. And that can be traumatic for a lot of patients to to bring up that, that bring up those stories again. So
Amber Tresca 6:01
Yeah, it really is and to have to explain it over and over again, you do get tired of it, you do get tired of it. I don’t know what the universe of social workers is. And then I don’t know, inside of that with the universe of social workers that work in digestive health is, but I’m guessing it’s small, because I think most people have never had a social worker on their team.
Amber Tresca 6:25
And in my own journey, I only saw a social worker very briefly, I think when I was first diagnosed, so I was 16 or 17. And it was kind of like, we had one appointment. And then that was it. It never occurred to me to ask for more, or that I could ask for more. I just didn’t know what I didn’t know. So I’m wondering, what are some of the typical issues that you help IBD patients with? And what does that look like?
Caitlin McGinnis, LCSW 6:53
Social Work has a wide variety of places that we can work in populations we can work with. So many times people, from my experience, at least see social workers as helping them with more of the community resources, right of maybe working in a nursing home or working for the state in some capacity or working with children.
Amber Tresca 7:15
Caitlin McGinnis, LCSW 7:16
Many of us also work in the hospital. And we can provide resources and support like that, but many social workers received their master’s degree. And then they go on to obtain a clinical license, which involves a lot of training, very long exam, a lot of studying. And so this role as a clinical social worker is providing therapy. So cognitive behavioral therapy, motivational interviewing, Acceptance and Commitment Therapy.
Caitlin McGinnis, LCSW 7:41
It’s teaching relaxation and stress management techniques. It’s diagnosing so it’s, it’s much more than resources and more of a concrete needs that social workers do maybe in the hospital setting or in different clinics and things like that, and trying to come up with the best treatment plan for the patient. So a lot of times I work with patients really adjusting to their diagnosis. So maybe it’s a new diagnosis.
Caitlin McGinnis, LCSW 8:09
So it’s really just kind of coming, helping the patient come to terms with having that chronic illness, and accepting that it is chronic, and something that will most likely remain for the rest of their life. In addition, I teach diaphragmatic breathing and guided imagery and different types of meditation to hopefully, the patient can incorporate that throughout their day. And that will decrease their stress, hopefully decrease their anxiety and in turn can hopefully decrease some of their GI symptoms that they’re having.
Amber Tresca 8:40
How many visits might you have with the spectrum of patients that you see?
Caitlin McGinnis, LCSW 8:45
It really kind of depends on the need, I do a full psychosocial assessment with each new patient. So I go through kind of their mental health, a whole whole bunch of questions, getting to know them a little bit better. And then we come up with a game plan and a treatment plan together of the best plan moving forward.
Amber Tresca 9:04
I think sometimes because IBD is kind of taboo, and people don’t want to talk about, you know, quote, unquote, bathroom issues, that even just having somebody ask them about their experience, I think maybe friends and family don’t always ask. Like that is just an amazing thing to have someone want to know more about how you’re feeling about your condition.
Caitlin McGinnis, LCSW 9:28
I completely agree because and I think this also comes back to having my own experience with it right? Because I’m comfortable talking about bathroom issues and bowel movements not only because this is what I do for a living, but this is my life to some extent as well.
Amber Tresca 9:43
Caitlin McGinnis, LCSW 9:43
I experienced you see and I have an ostomy and so I subconsciously I’m always dealing with in my own personal life. And so I just remember for me, you know, my mom could relate to some extent with having you see but you know your family and can be very supportive of you But I’m sure after some time, they may not want to hear about your bowel movements, or your need to go to the bathroom anymore. And it’s not insensitivity or anything like that.
Caitlin McGinnis, LCSW 10:09
But there just comes a time where I think it’s important to talk to a third party person, and especially someone who does have that experience. And I think it’s a bonus for myself to just be a therapist, but also have the GI experience. But you can still be a great therapist and not necessarily relate to the IBD or the GI world from a personal level. But I would say most people that I’ve met in my lifetime know someone who has Crohn’s or colitis, or IBS or an ostomy. So I feel like it’s very rare nowadays, either, fortunately, or unfortunately, to meet someone who hasn’t known someone who’s had one of those diagnoses.
[MUSIC: About IBD Transition]
Amber Tresca 11:08
Yeah, so this is what you do for work, but it’s also your life. Do you ever feel a little bit like you want to just let go of it and forget about it for a little while?
Caitlin McGinnis, LCSW 11:20
Yes. Especially when I self disclose because I it’s important to me to not make it about me, right? Yeah. Yeah. Like, I’ve been in therapy before, and I have processed everything I’ve been through with my surgeries, etc. And my health. And I think therapy is great for everybody, regardless of the reason or what you’re going through. It’s hard. That’s why I lean on other people, like a lot of my friends happen to be therapists as well, and social workers and I have family support. And, you know, I have kind of my own people to lean on, and to process some of these things.
Caitlin McGinnis, LCSW 11:55
But I have learned over the years of kind of creating that boundary for myself, right of like, okay, like, I know, I’m living through this, however, I’m very, I’m very lucky and appreciative and grateful that I’m healthy. You know, I’m doing pretty good considering what I’ve been through and my current circumstances. So I just always remind myself that I’m just very grateful to be here and grateful to be able to help other people who are going through this as well.
Caitlin McGinnis, LCSW 12:20
But there definitely are moments where I’m like, oh, man, I’m just tired of talking about bowel movements, and going for bathroom all day long. But at the end of the day, this I feel like I, I feel like I was meant to go through my experience to be able to do what I’m doing today.
Amber Tresca 12:38
Another way that you might be able to provide support on an ongoing basis is in running support groups. And you told me earlier that you have run support groups in the past. So what’s that experience? Like? And how does that work?
Caitlin McGinnis, LCSW 12:53
Yeah, so I have created support groups. In the past, I’ve done quite a bit of volunteering, and created actually a support group with the Crohn’s and Colitis Foundation, when I lived in Nashville, Tennessee, they had never had one in the Nashville chapter before. So I created one at the local library. And, you know, it’s definitely challenging at first creating anything at first is challenging, right. So especially a group, it’s definitely needed. But it can definitely take some time to get off the ground, a lot of advertising and getting the word out there.
Caitlin McGinnis, LCSW 13:27
But once it’s up and running, it is such a great community because and support groups don’t necessarily have to be structured either. I really, I took the approach as okay, I’m I created the support group, I’m leading the support group, but I’m really here for for guidance, right, I want to make sure every member of the group is able to speak and kind of share their story if they’re wanting to write because some people go to a support group, and they don’t want to share their story. They really solely just want to sit there and listen to other people’s experiences and just know know that they’re not alone.
Caitlin McGinnis, LCSW 14:00
And then we have other members of the group that do want to share their story and talk and get feedback off of each other. So I’m really there as kind of guiding the group making sure everybody kind of has an equal opportunity to share and talk and ask questions. And then even sometimes I like to incorporate a guest speaker. So I will have a one time I had a dietitian come in. And that was great, because people in the group were able to ask all these questions about diets. And I had a physician come one time that talked about new medications.
Caitlin McGinnis, LCSW 14:31
And so it’s a great opportunity to have those guest speakers, because I can’t answer those questions. And that way, you have the expert coming into the group and they’re able to share more and the members of the group were able to ask all these questions and just get more knowledge on everything. So support groups, again, are just a great way for people to first off meet other people that are going through this because Crohn’s and Colitis can be very isolating, and a lot of people struggle with going out and making friends or going to social activities.
Caitlin McGinnis, LCSW 15:04
And many people that I know I’ve met with, and even myself personally, you just don’t know a lot of people who have this disease, or these diseases. So the support group is purposely for these people. And it brings them together, whether it’s in person or virtual, but you know that you can, you’re all in the same room, and you’re relating to at least one thing. And that is the only thing that matters at that moment.
Amber Tresca 15:27
Yeah, I mean, I’ve never met another person in the wild who has a J pouch. And I’ve only ever met a couple people that live with an ostomy. And never one because of IBD. So it’s interesting. So have you seen people form like, really close deep friendships out of these types of support groups?
Caitlin McGinnis, LCSW 15:45
Yes. And I am one of them. Yeah, so definitely, I have seen it, I’ve experienced it myself a, you know, I attended a support group with the United Ostomy Association, and even the Crohn’s and Colitis Foundation. And some of my best friends today are from those experiences from those groups, and from those communities. So really a lot of like, like I said, my wonderful friendships that I have now are from being involved in those communities.
Amber Tresca 16:17
Yeah, so that’s a really great reason to get involved with some of the patient advocacy organizations like the Crohn’s and Colitis Foundation and the United Ostomy Association of America. Are there other reasons why why are these groups so important? Why should people get involved in volunteer do you think?
Caitlin McGinnis, LCSW 16:33
The main thing I can think of is one community, right, just going back to what we just talked about with support groups to have just meeting other people that are going through what you’re going through, or even not, you maybe you just you have a friend or a family member that has Crohn’s or colitis, but you’re volunteering while you’re still building that community.
Caitlin McGinnis, LCSW 16:53
And second, you’re bringing awareness that is so important, so big, because I feel like there’s such a stigma around having an ostomy bag and, or having Crohn’s disease and ulcerative colitis. And, you know, we tend to see some of those commercials on TV, which I don’t necessarily always agree with them about how they advertise people with Crohn’s and Colitis.
Caitlin McGinnis, LCSW 17:15
And like, I don’t spend all day in the bathroom, like waiters, like there’s more to, you know, just so I think bringing awareness more so than some of these advertisements. And, again, it just builds a community. And it’s so appreciated. I mean, and of course, in addition, you know, volunteering and being a part of these communities, ideally, also just raises money for research and, you know, creating new medications, and again, bringing that awareness so that we can kind of decrease that stigma of these diseases and you know, having an ostomy bag and a J pouch, etc.
[MUSIC: About IBD Transition]
Amber Tresca 18:06
So most people won’t have access to someone like you, unfortunately. So what would you tell IBD patients about the role that you have? Do you have any advice for IBD patients who are looking for the kind of support that you offer in your role, but maybe is not available to them? Or is there a way that they can’t find a social worker that does the kind of work that you do?
Caitlin McGinnis, LCSW 18:31
Right, so I wish there was more of me everywhere. However, I will say, you know, really, since the COVID, 19 pandemic, there has been an increase in counseling and therapists. So for example, a lot of primary care offices are incorporating clinical social workers in their offices to provide counseling and therapy, and it can be for whatever your whatever is going on in your life or medical, etc. And so in, you know, I know it’s not available everywhere, I do encourage people to take a look online because there are a lot of therapists for example, psychology, today.com, or someone can call their insurance company and ask for a list of clinical social workers in their area.
Caitlin McGinnis, LCSW 19:20
And then you can even narrow it down by specialty. So there are some clinical social workers that specialize in chronic pain or medical conditions or more of the generic anxiety depressive depression, stress management. So I feel like many social workers can provide the type of skills and stress management techniques that I provide. I just, you know, I have that extra specialty that I use as well with the digestive health but a lot of what I’m teaching and talking through with patients, you can find elsewhere with another therapist. And I would I would encourage people to go on To the Crohn’s and Colitis Foundation website and the United Ostomy Association of America website, because they do have access to mentors, so other patients that are willing to talk to other people about their experience.
Caitlin McGinnis, LCSW 20:14
So it may not necessarily be therapy, but you have the ability to talk to someone who’s gone through what maybe you’re going through. I mean, social media is so big now, as you know, so there’s so many Facebook groups. So Instagram has so many people talking about having IBD, and an ostomy, and IBS. So there’s a ton of resources and there was even 10 years ago. But again, I would just utilize, I would just encourage people to reach out to kind of any type of therapist or psychologist or psychiatrist that maybe has some experience with chronic illness.
Amber Tresca 20:47
Are there any other resources that you’d like to give your patients about? Life with IBD, or life with an ostomy, that you have found to be helpful to them?
Caitlin McGinnis, LCSW 20:56
Yes, so one in particular is, and I’m thinking more so on the ostomy side is a company called Eakin, e-a-k-i-n. So I’ve met the owner, he’s from Northern Ireland, and that’s where his company is. And he’s a pharmacist and his daughter had an ostomy. And so he kind of made it his life passion to create different pouches and different type of kind of medical items to use when one has an ostomy.
Caitlin McGinnis, LCSW 21:27
But in addition, they have a website, I believe it’s called a bigger life. And it’s all bloggers. So I even have a few blogs on there, myself. And it’s ostomy patients that have posted blogs, and they’re all different topics. So dating intimacy, going back to school, working, just navigating life with an ostomy. And I know the Crohn’s and Colitis has similar avenues and blogs, as well.
Caitlin McGinnis, LCSW 21:56
And so I really encourage people to just, you know, use Google and look up the internet, because there are a lot of resources on there that we’ve never really thought about a lot of more podcasts out there as well, that people are starting to create like this one, which is great, and just other ones that are just bringing so much more awareness. And I think those are great resources to give patients and, you know, encourage them that, you know, they can still do life and be active and enjoy their life. Even with an ostomy or Crohn’s, they’re all sort of colitis, it’s so important to be able to see all you know the possible resources and other people living through it, too.
Amber Tresca 22:36
Yeah, I love to refer people to other people. Some of the questions I see a lot in groups are like, can I go swimming now that I have an ostomy? And I’m like, Well, yeah, and as a matter of fact, you know, I have a friend who is a competitive swimmer. And you know, and just like making those connections once you get into the community, and being able to help one another and and answer these questions, because it’s one thing like your surgeon can answer some questions, your gastro can answer some questions. But sometimes just like another patient is what you need to answer these sort of lifestyle things for you.
Caitlin McGinnis, LCSW 23:12
Yes, that’s that. I’ve had that question to me a few times about the swimming. And actually just a physician recently reached out to me kind of she knows about my, my personal stuff. And she has a patient that may need, you know, an upcoming ostomy surgery. So I spent some time talking with this person, and they were just, you know, kind of asking me question after question. And one of them was like, you know, Can I swim? Can I be active, like, I love being active, I love hiking all these things.
Caitlin McGinnis, LCSW 23:43
And, you know, and I was like, Hey, I just traveled to a different country and went rock climbing, and I went kayaking. And he, you know, just, they were amazed and just kind of shocked and had no idea that that was even possible. So again, like you said, it’s just bringing the education and awareness because our surgeons and, you know, our gastro is can tell us these things. But until you know, someone, I’ve actually gone through it, and I’ve done it, it’s kind of hard to really envision it. So just kind of knowing someone.
Caitlin McGinnis, LCSW 24:13
And I’ve, you know, I’ve always been really open to that I’ve kind of published a few articles years ago and had my email on there. And so people who read it would, you know, email me and ask various questions. And it’s truly my passion because I know that that there wasn’t there for me at the time when I was going through what I was going through. And so I realized how much it’s needed and how important it is for people just talk to someone who’s experiencing you know, for example, you with the J pouch, or me with the ostomy, etc. It’s just it makes a world of difference to talk to someone who’s gone through it or currently going through it.
Amber Tresca 24:46
Right, right. And you’ve done some travel in your life. Do you have a favorite trip? Do you have a favorite place that you’ve been?
Caitlin McGinnis, LCSW 24:54
So the first week of August, I traveled out to Banff National Park work which is out in Alberta, Canada. So Way Out West above Seattle, Washington and went out there by myself. I yeah, I went for a week, I went to Calgary and saw my favorite band and then drove out to Banff National Park. And that’s the trip where I went rock climbing for the first time, I went kayaking, I did a bunch of hiking, it was just it was the best trip ever.
Caitlin McGinnis, LCSW 25:26
Traveling has been actually quite a breeze for me, even with my ostomy. I mean, you know, he just kind of come prepared, you’ll learn what you need to do, kind of bring extra supplies. But I just feel very fortunate to feel pretty good most of the time, and just have my life back with the ostomy and be able to travel because probably is one of my favorite things to do. And this was by far, one of the best trips I’ve done in a few years.
Amber Tresca 25:50
So what was the band that you saw? Who’s your favorite band?
Caitlin McGinnis, LCSW 25:54
Oh my gosh. So I don’t know their genre, maybe like American Americana or indie rock, but they’re called Lord Huron.
Amber Tresca 26:03
Caitlin McGinnis, LCSW 26:05
And they’re based out of California. I’ve seen them a bunch of times live when I lived in Nashville. And at the time when I was looking at shows they had not announced any US tour, they only announced going to Canada. So I took a look. And then I looked at the map and realized Calgary is only an hour from Banff, and Banff has been on my list for a couple of years. So one night I just went ahead and bought one ticket for the concert and I said okay, I’m going to Canada. So I went and the band was so good like brought me to tears. The views and Banff National Park are just breathtaking. The wildlife. The color of the lakes are this crystal blue collar I’ve never seen before. And the people are so nice. It’s definitely a must see for anybody.
Amber Tresca 26:54
Oh, wow, that sounds amazing. I’m so glad that you got to do that.
Amber Tresca 26:59
Caitlin, thank you so much for coming on about IBD it’s such a pleasure to work with you and to speak with you. And I look forward to working with you more.
Caitlin McGinnis, LCSW 27:08
Yes, me too. Amber, thank you so much for having me.
Amber Tresca 27:16
Hey, super listener.
Amber Tresca 27:17
Thanks to Caitlin McGinnis for sharing her journey and how it has informed the work she does in the chronic illness community. As more people look for help in managing their mental health, knowing some alternate ways to approach finding a provider or a support group is really timely and valuable.
Amber Tresca 27:35
Caitlin is a Clinical Social Worker in private practice who specializes in working with people who live with chronic medical conditions. I will put her contact information in the show notes.
Amber Tresca 27:44
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 my Episode 129 page on AboutIBD.com.
Amber Tresca 27:58
You can follow me, Amber Tresca, across all social media as About IBD.
Thanks for listening, and remember, until next time, I want you to know more about IBD.
About IBD is a production of Mal and Tal Enterprises.
It is written, produced and directed by me, Amber Tresca.
Mix and sound design is by Mac Cooney.
Theme music is from Cooney Studio.