This article is one in a series that make up the transcript of our OstomyLife Roundtable Discussion Webinar. Our webinar was moderated by Laura Cox, Shield HealthCare’s Ostomy Lifestyle Specialist and the guests were: Eric Polsinelli, of Vegan Ostomy, Brian Greenberg, of The Intense Intestines Foundation and Bret Cromer, of the United Ostomy Association of America and Youth Rally. You can read more about their involvement in the ostomy community by checking out their sites or by reading our webinar article here. You can also head here to check out our video recording of the webinar and find the other transcripts from the discussion.
Click on one of the below questions to be taken directly to the answers given:
How did you go about accepting your ostomy?
Do you tell people in your life about your ostomy and if so how do you like to do it?
What’s the age group for Youth Rally?
How did you go about accepting your ostomy?
Brian: That’s a really hard question because everybody is different. I’ve always been a very positive person and the way I’ve explained it to ostomates or IBD patients or even my friends when they ask me how have I gone through so much and still have remained positive is: laying in bed and staring at my ceiling and crying is not going to help me very much. So I think getting out there and living life to the fullest really helps you and helps your mentality and I think that’s the best advice that I can give any ostomate; just get out there, do the things you love and, like you said earlier, once you get out there and you take that first step and you do activity after activity after activity and you realize that nothing really bad is happening, you’re going to be okay and the ostomy is going to be okay also and you’ll just become more and more accepting of it each time.
Do you tell people in your life about your ostomy and if so how do you like to do it?
Bret: So this has changed during my life. When I first had my surgery when I was 16 I was a lot more open about it with folks in trying to tell my story. I think that was part of my acceptance, part of being sick at high school; people wanted to know what happened to you and why you were gone for six months. So I think that I used that as an opportunity to just let people know what was going on. And as I rolled into college and rolled into dating and fraternities and jobs I became a little more – I don’t want to say I was not telling people about it, but I wasn’t so open, I wasn’t sporting the word “ostomy” right on my forehead. And that of course has kind of changed as I’ve become associated with this camp that we do and with the local support group that we’re running. I think it’s turned into a little bit more of an opportunity to have a conversation with folks. People start relying on you as a resource, like, “Hey, my son is sick” or “My buddy is sick,” so I will tell him a little bit about it. There’s more folks in my life that know about this as that circle of friends has grown closer, but I’m not shy about talking about it so much, with the exception of my work place, with my employees and the folks that I work with. But I think it’s more of an honest conversation with folks. If it comes up it’s really become a course of action to just talk with them not for an hour, but just a few minutes about what I went through and let them know that if they would like to talk about it I’m open to spend some more time to talk about it more than an informational thing.
Eric: I do tell people, yes, I’m actually not shy at all to talk about my ostomy and I was never shy even to talk about Crohn’s disease and I think that you know the more I would talk, I think the more people would open up about their own experience, whether they’ve had it, or perhaps a friend or family member has had it, too, and you really get to learn more about people that way. But for me, it’s just more explaining a little bit about what Crohn’s disease is and how that affects the bowel and you know why I’ve had to have an ostomy, but yeah I’m quite open about it. Doesn’t bother me at all.
Brian: I have yet to get a negative reaction when telling anybody about my ostomy. I think if you have a positive attitude and you bring it up in a positive way, people are going to react positively. Oddly enough, I was a marketing major in college and before I got my ostomy, I already did some market research with all my friends. I asked, “What would you do if one of your friends had an ostomy?” or “What would you do if you know a guy told you he had an ostomy that you were dating?” And all of them said, “Yeah, we wouldn’t care, as long as it gave them good health, as long as it allowed them to be with us and hang out with us, we’d be happy for them to have an ostomy because it’s not that big a deal. I remember one of the biggest reactions that I got was: my foundation had a comedy show and we had about 150 people in the audience that night and I got up before the show and gave my little spiel and you know I asked everybody to please raise their hand if they went to the bathroom today. And obviously every single person raised their hand and then I explained what an ostomy is. And I said does anybody have a problem that I went to the bathroom today a little bit differently? And everybody just started cheering. Everybody started laughing and they all realized it’s not that big a deal. We go to the bathroom in a slightly different way, but nobody really cares. So I’ve only had good reactions, I’ve only had positive experiences and I don’t mind talking about it with everybody and I think if a person is positive about their ostomy and they show it in a good light then everybody around them would probably have a positive reaction as well.
Laura: That’s a great way to frame it that I just go to the bathroom in a little different way. And Eric, since you also are an open book what type of reaction from people do you usually get?
Eric: It’s usually very positive and I’m going to echo what Brian said, that I really haven’t had any negative reaction to it to be honest. Now that’s not to say on the Internet you won’t see negative comments towards ostomies, but that’s the Internet for you. But I think overall when you’re talking to someone about an ostomy what usually happens is they’ll say, “Oh yeah, I know someone who has an ostomy,” whether it’s a parent or grandparent or a friend, so you know there’s a little bit of a commonality there where you can discuss it and it’s going to be quite positive, I think. It’s really never a bad thing to talk about the ostomies when you’re face to face with someone.
What inspired you to get involved in the ostomy community and why was it important to you to get involved?
Brian: That’s a great question because it’s been years in the making, obviously. I think what inspired me was knowing that I wasn’t alone and there were other people out there, but there weren’t many stories that I found on the Internet. There were a couple here and there, but there wasn’t a lot of information, especially for younger people. You know there’s that stigma that we’re trying to get rid of that ostomies are for old people or the elderly, but for the most part I found that there are a lot of individuals who are very young out there that want help and they’re very scared and nervous about how an ostomy might affect their lifestyle and it was very important for me to show them that things are going to be okay whether you get an ostomy as a teenager, whether you get an ostomy as a young adult or whether you get an ostomy as an adult. You have a network around you of great people that are here to help and here to get you through whatever is thrown your way. And I think that was very important to me was to get my story out there to show people that living with an ostomy is absolutely fine, that you are going to be able to do a lot, that you are still going to be able to live the life you want to and do the things that you enjoy. I think that was the most important thing for me to get involved in the ostomy community.
Eric: Seeing other ostomates inspired me. The transition from when I found out that I’d be needing an ostomy, to the time I actually had surgery was only a few months so it was a very short period of time, but in that time I was inspired by others who had an ostomy and they were sharing their stories and it inspired me really to become an advocate and I think that a lot of what I do, it’s kind of like I’m re-paying what those people gave to me. It’s so powerful, I think, to see what one video, for example, can do to somebody. It just changes your perspective, it changes your mindset and then it sets the stage, basically, for the rest of the time that you have the ostomy. So, for me, I’m inspired by seeing other people do well with their ostomy. I’m inspired by the stories that we share with each other and just being part of the community. It’s overall been very positive.
Bret: What inspired me to do what I do now with our camp (Youth Rally) didn’t hit me until I was about twelve years into this journey when a little twelve-year-old walked into our support group – he was full of life, full of inspiration for all of us and we started talking with him. He asked us to sponsor him to go to this camp, so we did and he came back the next summer, told us about it and it didn’t really hit me. Then he asked me to become involved so I got to be a counselor at this camp and this camp has grown from 75 to almost 150 kids and these kids provide more inspiration than I’ve ever been witness to for everyone involved. Their stories make mine pale in comparison, the struggles that they go through, the challenges that they face make me realize that I really didn’t face as many challenges as I thought I did. I didn’t really have it quite as tough as some of these stories that show up, but each of these kids, they just embrace life, they deal with these challenges and they move on. It‘s really inspired me to take this to the next level, but for me it didn’t happen until I was many years, really, into this journey in that time.
What’s the age group for Youth Rally?
Bret: It’s 11-years-old to 17 and I’d like to just clarify that it’s for any teenager 11 to 17 with any sort of bowel or bladder dysfunction, disease, diagnosis. It’s not just limited to Crohn’s and colitis. We have about 54 different diagnoses that we’ve seen over the years – Spina bifida, you name it, we can handle it there, so good question.
My 89-year-old mother loves to swim but she has found that the pouch fills with water when she gets into the pool. What can we do to fix this?
