Lauryn Cooney 0:00
Hello and welcome to our Resource Spotlight. Today I have Colors of Gastrointestinal Illness with us. I’m Lauryn Cooney. I’m a COLONTOWN member and also a stage IV patient. And I’m here today with D’andre Hardy, who is an ambassador for Colors of GI and she’s going to speak to us about their resources and programs.

But first she’s gonna give us a brief overview of what they do.

D’andre Hardy 00:33
Yes. Hi everyone. I’m D’andre Hardy and I am an ambassador for Color of Gastrointestinal Illnesses, also known as COGI and I’ve been an ambassador for the last three years because I found COGI on Instagram, and I think that’s just the power of community there.

And so what COGI does is it’s a nonprofit organization designed to increase the accessibility community research efforts for people of color, and from marginalized populations with gastrointestinal illnesses. And so as someone, I was diagnosed with Crohn’s disease when I was 12, so I’ve been about 25 years with Crohn’s Disease and I’ve been an ostamate for the last 11 years, I think I’m going on 11. So I’m a permanent ostomate, due to having Crohn’s disease. So, with COGI, the community is everything. So you have a lot of people who have different gastrointestinal illnesses, but we’re all in this together. We’re navigating the medical system. We talk about policy and different laws that we can advocate for during our advocacy day, research new medications, we have access to doctors and people who we can talk to to get information about new medications or participate in medical research and why it’s so important for marginalized populations to be represented in those types of studies so that the medications can work for us so that we’re included and considered in any type of intervention that’s happening.

And we also increase awareness and access to medical screenings. So we know early screening saves lives. Screenings and the importance of just making sure that you’re on top of your medical care. So that is what we do. And the part of Beyond the Bag is the group that I lead, but there are several different other groups for people to be involved in.

So there’s a parent care group. There is a group for men called The Huddle that’s just a safe space for men to come and talk. There’s also a group for young adults who are navigating gastrointestinal illnesses, and that’s just been a great way to connect with other people who are experiencing some of the same things that you are, but maybe in different ways to be able to connect and have that support system.

Lauryn Cooney 02:56
Perfect. That’s so helpful. And I don’t know if you wanna go into the Beyond the Bag group that you host and give us an overview of what you guys talk about when you meet, those types of things.

D’andre Hardy 03:09
Yes, of course. So Beyond the Bag is the space just for people who have ostomies or they may be considering getting an ostomy.

And so, with that group, it is open to all genders, all ages, everyone. There’s a majority of women who are in the group now, but we would love to have other people join us. But in the group it’s really a safe space to just talk about no matter where you are on your ostomy journey, to talk about what life is like.

And we called it Beyond the Bag because we did not want it to just be about like, oh, this is how I put this, my ostomy bag on, or this is, these are the products that is a part of it, but we know that having an ostomy affects every area of your life, so we have a safe place for you to come and talk about it.

Like there are sometimes where we open up and it’s just a vent session and people talk about, I hate that this happened or I was trying to find this type of outfit. And so it’s not a place where everything has to be positive or it just has to be about the medical piece of having an ostomy, but just really what your life is like.

So for example, we had an intimacy coach come in October to talk through dating, relationships, intimacy, and navigating all of that with an ostomy. We are having an accommodations person come in November to talk about how we navigate work accommodations or some people if they’re thinking about the disability process and going through a formal disability process based on what they have going on.

Other topics, sometimes we just have a free-for-all where we are just talking about everybody just comes on and we just do a round robin and we just provide support for each other. We’ve had a product fair where we talk about our favorite products and why, and so it’s just normalizing ostomy life because we know it can be a taboo topic and I don’t believe it should be one.

And talking about how we can all have the best quality of life together and be there for each other during, throughout this journey. And it happens once a month, every third Thursday. And our other joke is you bring your favorite beverage no matter what it is. But we bring our favorite beverage, we’re on Zoom.

It is not like. It is not a very professional buttoned up space. We want people to come on relaxed, feel relatable, we know each other’s kids and stuff now, like we just have created a great community space. And then when we do meet up, so we don’t have in-person meetups regularly, but at our Equity and GI conference, we do a meetup and we have a lot of fun.

So we go out to a restaurant, we chill, we make sure we’re hanging out. And so it’s just a great way to build community in that space.

Lauryn Cooney 05:58
That’s so great. I love that you include people considering an ostomy because I think that’s so important. I don’t see that a lot and there’s, you know, a lot of, obviously a lot of questions and a lot of concern I’m sure going into it.

I know from myself, having one, it, it would be so nice to have people to chat with, so that’s great. So it meets the third Thursday of every month. Do you need to sign up ahead of time or can you just pop in, or how does that work?

D’andre Hardy 06:31
Yes, because we are discussing HIPAA information and just to protect the sensitivity of the group you do sign up via COGI’s, website. So there’s a jot form, so you put in your information and then you get the protected zoom link from there. So, okay you have to sign up every time. And then, we also have a GroupMe. So if someone becomes a member of COGI, which is you become a member. You sign up online, then, then they can join the GroupMe as well as a protected space.

But we really are serious about protecting people’s HIPAA information and all of that. So, COGI, does everything on the technology side to make sure that these spaces are safe and protected since people are sharing so much sensitive information. Yeah.

Lauryn Cooney 07:18
Yes. To become a member of COGI, is that free or do you guys have a membership fee?

How does that work?

D’andre Hardy 07:25
No membership fee. It’s absolutely free. You can sign up on the website and you will start receiving information. The membership coordinator will reach out to you just to welcome you and learn more about what support you may need. But we also, we have a private Facebook group.

We have of course the GroupMe spaces as well. And then there’s always the opportunity to become an ambassador. That is also free. You can sign up, become an ambassador. There are some requirements to how you share information, and advocate for and raise awareness about the organization, but in general, all of this is on a volunteer basis for people who want to just build community work on growing access to GI care and having your story and your face represented in the conversation.

Lauryn Cooney 08:16
Perfect. I think that that was such a thorough presentation and I am really excited to share this with our community and I am grateful for you for giving us your time today. So thank you again. I wanna thank you and I look forward to hearing about people’s experiences with COGI .

D’andre Hardy 08:39
Yes, thank you. Check us out. You can follow it on Instagram, on Facebook and connect there. And I would love to see more people join and interact. So thank you so much for having me today.