Episode Transcript

Ariel: Hello, and welcome back to another episode of the “Colon Health Podcast.” I’m your host Ariel Bridges. And today, I’m coming from you live at the conference for American Society of Colon and Rectal Surgeons. And today, I’m sitting next to the lovely Susan Burns. Hi, Susan.

Susan: Hi, Ariel. How are you?

Ariel: I’m excellent. Thank you so much for sitting next to me and having this chat. Can you just please start off by sharing who you are and what it is that you do with our listeners?

Susan: Well, I’m the past president of the United Ostomy Association of America, which is a patient-centered organization that helps people that have had ostomy surgery. I am now the president of the North and Central America and Caribbean Ostomy Association. So, we help patients in that part of the world learn about colonoscopies and all the different surgeries if you have to have an ostomy.

Ariel: That’s amazing. I have so many follow-up questions to ask you to define things. But first, I always love to, for whoever I’m chatting with, I’d love for them to share a little bit about their personal journey and what got them into doing what it is that they do now. So, can you share a little bit about that?

Susan: Oh, I think that’s a great idea. I was in my 30s, and I had just had a baby, and I thought I had the flu. I was having abdominal cramping. And then when I realized it was not just the flu, I went to my father who was a physician and he goes, “Well, do you have any blood in your stool?” And I said, “Yes.” He goes, “Well, you need to go and have a colonoscopy.” Which I did. Didn’t want to do it, wasn’t happy about it, but I thought I have two small children, I need to do this. So, I went and had it and I was diagnosed with ulcerative colitis, which is basically having ulcers in your colon versus your stomach. So, for a number of years, I took medication. But finally, it got to the point I was so sick that I had to have ostomy surgery. Now, this is back before the internet, so I didn’t know anything about it. So, I went to an ostomy support group that explained to me what the surgery was and how to live with it. But, had I not had a colonoscopy, I would have probably been misdiagnosed, and probably would have gone on and stayed sick, instead of going, “Okay. Let’s have the colonoscopy. Let’s find out what you really have going on, and how can we help you?” Now, did I want an ostomy? No. But it saved my life. And I’m now 70.

Ariel: Oh, my goodness. You look not a day over 45.

Susan: Oh, well, thank you so much. Ariel’s a great liar, but thank you. Thank you.

Ariel: Oh, my gosh. So, that’s amazing. We have a lot of listeners that also have ulcerative colitis. But can you just back up a few steps and even define what an ostomy is for those who don’t know.

Susan: Okay. An ostomy is a small opening on your abdomen that allows either fecal or urine to escape into a pouch that you wear on your abdomen. Now, a colostomy can be reversed. Some people, they literally can give you a temporary ostomy, an opening, allow the fecal material to come out and the rest of your bowel heals. They can go back and cut out that bad section of your bowel, reconnect you and you’re good to go. If you have a little more advanced disease, they might have to do what they did to me, which is they took out all of my large intestine and my rectum, then they took the very end of my small intestine, bring it outside of my body, and make a small opening called a stoma. And that stoma allows the fecal material to come directly out of the stomach into the small intestine that’s very caustic. So, you have to have a really good ostomy appliance that adheres to your belly so that when you eat something and it gets all those digestive juices going to break down the food, it goes through that small intestine and it goes through that small hole called the stoma into a pouch. You wear the pouch all the time, and you probably will have to empty your pouch four to five times a day. And you simply emptied it when you go to urinate.

Ariel: Okay. That seems easy enough.

Susan: Yes.

Ariel: So, would you say were there any big life changes? How did this procedure change the way that you lived your day-to-day life?

Susan: Well, being 35 and a young woman, I wanted to know about sexuality.

Ariel: Of course.

Susan: Would my husband go, “Oh, dear, that’s not good.” But we have what we call ostomy secrets, which are feminine garments that help you cover up in a sexy way. Which was good. And really, the stoma is in the middle of your abdomen. So, to get to your… And I’m being very blunt here. But men are interested in breasts and vaginas, right?

Ariel: Right.

Susan: Okay. So, that middle area is not really too important to them. So, you can wear different garments that will cover up the stoma and the appliance so you feel feminine. You wanna feel feminine. Also, I wanted to make sure that I stay hydrated because, with an ostomy, things go through you, you lose a lot of fluid, so you need to drink a lot. But what happens when you drink a lot? You have to urinate a lot. So, you have to let your co-workers understand that I may have to use the powder room a little more often than maybe you would. I was also worried about the odor. What I do is I carry a little bottle of perfume. And when I go into a stall in a public place, I spritz. And most people think, “Oh, she’s just refreshing her perfume.” I open the end of my pouch, empty it, clean it up, put the clip back on, there you go. No worries. Now, there’s plenty of products. You can chew tablets, you can drop chemicals inside the pouch to dissolve the odor. There’s many things on the market. So, that’s not a problem. But it was because I didn’t know. I didn’t know about that. And that’s why I went to a support group because they knew about that stuff.

Ariel: That was gonna be my next question is how do you learn about all these things? What are some resources that people can take advantage of?

Susan: Exactly. UOAA has over 285 groups across the country that you can attend. We also have Zoom calls, we also have an office where you can call. Let’s say you have a question and you don’t live next to a support group. But you could call the office and say, “I’m a person that’s thinking about having an ostomy. I’m 30 years old. I have ulcerative colitis.” I can hook you up with somebody that’s 30 years old that has ulcerative colitis, and we can talk. They can go on Zoom, they can go to Starbucks, they can email because you need to talk to somebody that’s had this. The doctors are great. We love them. The nurses are great. They called wound, ostomy, continence nurses, but there’s not one in every city. So, you need somebody who’s been there done that.

Ariel: Absolutely.

Susan: Absolutely. I always think about it. If I had a mastectomy, I would want to meet somebody who had a mastectomy.

Ariel: Oh, yeah.

Susan: Okay. Well, that’s the way I looked at it. I wanna know how you live with this. And so, when I found out that sexuality wasn’t gonna be a problem, that I could eat most everything I wanted to within reason, that I could swim, I could have sex. We say if you did it before, you can do it after, just with modifications. And we want your life to be the best quality it can be because we don’t want this to ruin your life, we want it to enhance your life. We want you to be as healthy as you can.

Ariel: That’s amazing. We chat so often on the podcast about the importance of community and how having those connections with people can be so beneficial in a variety of ways, but in healing and understanding the process of what’s going on with you because journeys like this can be so isolating.

Susan: Well, you wanna kinda have an ostomy buddy. You want somebody to go, “Okay. I had this problem. Have you had that?” And your doctor is not gonna answer that, and your nurse isn’t gonna answer that, but I’ll answer that.

Ariel: Yes.

Susan: Especially, a lot of our colon cancer patients, they have issues with hemorrhoids, or they’re worried about the cancer coming back. So, they get nervous and they wanna talk to somebody and we got to talk them off the ledge. Got to talk them off the ledge. But sometimes it’s just another person that’s gone through it that you need to talk to, not a medical professional. We love our medical professionals…

Ariel: Of course.

Susan: …but we want our people too.

Ariel: Yes. It makes such a difference.

Susan: Our community.

Ariel: It makes such a difference. I would love to know more about some of the specifics of what UOAA does if you could share some of that information as well.

Susan: Absolutely. We try to develop documents and information on all the four surgeries which are urostomy, colostomy, ileostomy, and continent diversions. Now, continent diversions, they literally make a pouch inside your stomach and you self catheterize yourself. Okay. So, that’s a whole different group of people. What we try to do is make sure that you know that we have social-emotional support, that you have physical support. We do not give out medical information, we send them to the wound, ostomy, continence nurse. We have group meetings, we have newsletters, we have conferences, we have symposiums, we have regional meetings, everything to gather our community to sit down face-to-face and say, “Okay. I’m going to go through this, or I have gone through this, and these are my problems, how can I solve them?” So, UOAA is like the clearing house, I would say. And we have people that answer the phone that can help you for immediate help, then we have people that we send to psychosocial, we have some psychiatrists on duty.

Ariel: Oh, I love that.

Susan: Exactly. We have nurses that are on duty if you’re having a medical emergency. So, whatever you need, we wanna provide it for you.

Ariel: So, how do people…is it as easy as going to a website or how do people get plugged in?

Susan: ostomy.org.

Ariel: Oh, that’s very easy.

Susan: That’s easy. And all that comes up, it shows our events, it shows all our printed material, any events that might be related like a colon cancer conference, or digestive disease national. Now, we advocate also in Washington, D.C. because unfortunately, our legislatures don’t understand. Let’s say you have diabetes and all of a sudden they say, “We’re not gonna pay for those needles anymore.” Well, that’s ridiculous, right?

Ariel: Right. Yeah.

Susan: Well, I don’t think you’d want to be sitting next to me if I didn’t have my ostomy appliance, right? Okay?

Ariel: Yeah.

Susan: Okay. So, we have to go every year to the Digestive Disease National Coalition and explain to them that they need to keep providing ostomy supplies to our Medicare and Medicaid patients.

Ariel: Oh, yeah.

Susan: But that works. And it…thank goodness it does. But unfortunately, some of our younger people, insurance doesn’t cover it…

Ariel: Oh my.

Susan: …which can be a real strain on somebody’s budget. So, a lot of our groups all over the country have what we call closets. And we get donated supplies from people that have passed or people that are just temporary, and they donate their supplies, and we give them to our neediest people.

Ariel: Oh, that’s amazing.

Susan: Isn’t that wonderful? It is wonderful.

Ariel: That’s so wonderful. Okay. There’s loads and loads of excellent resources for people. This is incredible. I would love to hear, especially from your perspective as someone who just found out that they have to get this surgery. What advice do you have for them? Because I imagine that has to be overwhelming…

Susan: Overwhelming.

Ariel: …for a lot of different reasons.

Susan: Take a breath and then go on ostomy.org, find out what surgery you’re going to have, which is very important. You’ve had your colonoscopy and so they’re gonna tell you you might have Crohn’s, you might have colitis, whatever. Then go on to our website and locate that surgery, look at it, see what’s actually gonna happen to you physically, and then take another breath and then go, “Okay. This gonna happen. Is it going to ruin my life or not?” That’s a decision you’re gonna have to make. Because yes, it can be overwhelming, but don’t let it be overwhelming. And then try to contact a stoma clinic, or a WOC nurse in your area and have a pre-op meeting. And sit down and talk with her and say, “What can I expect really?” A lot of nurses will actually put an appliance on you. So, you can wear it for a couple of days, so you kind of understand.

Ariel: Oh, wow.

Susan: Isn’t that good?

Ariel: Yeah.

Susan: So, you get, “Oh, okay. What kind of clothes can I wear?” We have all sorts of…like I said, all sorts of things that can help hide it. You don’t have to wear baggy clothes, you don’t have to worry about that. You can wear Spanx if you want to, because some people feel a little more comfortable that way. And then, again, try to go in and talk to your WOCN, then try to have a pre-op meeting with your surgeon and go over again, “Exactly what are you gonna do to me?” And then understand one thing that no doctor will tell you. It’s gonna take you about six months to get over this. If you don’t bounce back like this from gallbladder surgery, you’re gonna be pretty hurting and learning about your appliance. It’s gonna take about six months. But if there’s a group in your area, come and we’ll talk to you, we’ll help you. We’ll help you find the pouch that’s ready for you because, not one pouch fits all. And there’s many options, many options. So, you don’t have to wear… whatever they put you in the hospital, you don’t have to wear them. There’s so many other options. So, if you’re finding that appliance is not working for you, we can find one that will.

Ariel: Oh, see I’m learning so much already. These are things that I feel like people don’t even…

Susan: They [crosstalk 00:14:54]

Ariel: …they don’t know that they have these kinds of options because that’s stuff that I feel like is definitely not discussed when you’re told, “Okay. You have to have this procedure done.” That’s amazing. Okay. So, I would love to hear any kind of last thoughts or advice. And of course, everyone, as always, I’ll link a lot of the things that Susan’s mentioning in the show notes. So, be sure to click and just scroll down and access those links, find those people near you, and take advantage of the resources and opportunities that she mentioned. But is there any other kind of last-minute advice or things you’d want people to know about?

Susan: I want them to know that if you did it before surgery, you can do it after with maybe a few modifications. And that’s… You can live your life, you can. You can have babies, you can travel. Just know that there’s a community that will support you. We will. We want you to be happy. So, look into UOAA.

Ariel: Oh, I love it. Susan, thank you so much again for sitting next to me and having this chat.

Susan: Well, thank you.

Ariel: I learned so much.

Susan: I’m glad.

Ariel: And everyone, as I always say at the end of the podcast, we all have colons, so make sure that you ask questions, do your research and have a conversation like this one.

Susan: Perfect.

Ariel: All right. Well, I’ll see you next time on the “Colon Health Podcast.” Bye.

Susan: Bye-bye.