Psychological Impacts of Having a Stoma

Podcast Transcript

Scott Steele: Butts & Guts, a Cleveland Clinic podcast exploring your digestive and surgical health from end to end. Hi again, everyone. And welcome to another episode of Butts & Guts. I'm your host, Scott Steele, president of Maine Campus and colorectal surgeon here at Cleveland Clinic in beautiful Cleveland, Ohio. And today, we're going to talk about something that is near and dear to my heart and that's talking about the psychological effects of having a stoma. And I'm so glad to welcome a first time guest, Dr. Jessica Woodford, who is a clinical psychologist in the department of colorectal surgery here at the Cleveland Clinic. Dr. Woodford, thanks for joining us on Butts & Guts.

Dr. Jessica Woodford: Thanks for having me.

Scott Steele: So as our listeners know, we'd like to first delve into a little bit into your background. So where are you from, where'd you train, and how did it come to the point that you're a clinical psychologist in the department of colorectal surgery?

Dr. Jessica Woodford: So I am originally from Cleveland. I studied undergrad at Ohio State, so I am a Buckeye through and through. I did my master's in clinical psychology at Pepperdine University. And then received my doctoral degree at the University of Texas Southwestern Medical Center, also in clinical psychology where I focused on health psychology. And I guess I found my way to health psychology because I've always kind of been around the healthcare system, just growing up with family members who have had serious illnesses and just observing how the medical illness has impacted the dynamics within the family and work and school and things of that sort. I guess I just have been fascinated by that kind of impact from one another. So kind of led me to the clinic and what I'm doing now. I don't know that I would've found my way to the colorectal surgery department any other way other than happenstance. One of my colleagues pointed me to your direction and I have been loving it ever since I got over here.

Scott Steele: Well, we are so glad to have you here and it's been wonderful for our patients. And so today we're going to be talking through the psychological impacts of having a stoma. So can you explain a little bit about what a stoma is and why someone would need one in the first place?

Dr. Jessica Woodford: Sure. So one of the things that even I had to learn coming in is just a little bit of terminology. So learning the slight differences of what a stoma is versus what an ostomy is. They're related terms, but they have slight differences in their meaning. So an ostomy is a type of surgery that creates an opening in the abdomen and creates a different way or pathway for a person to have waste exit their body. And when I say waste I mean poop, we're talking about butts and guts. And there are different kinds of ostomies, I mostly work with colostomies or ileostomies. But there's also urostomies as well, which changes the way that urine exits the body, but I don't work with those as often. And then the ostomies, that surgery that you have can be temporary or permanent. And then the stoma using that term just talks about the actual opening on the abdomen or on the belly. And then there's an ostomy pouch, which is the appliance or the bag that goes around the stoma. So there's different terms and you may hear them interchangeably during this conversation.

Scott Steele: So being a colorectal surgeon, having multiple conversations, it's not uncommon for patients to tell me that they would rather die to be honest than having a stoma. So can you talk about the common emotional reactions patients might experience initially when they find out they may need an ostomy?

Dr. Jessica Woodford: Yeah. I think the emotional reactions vary and it depends on the patient and there are various studies about the reactions as far as depression and anxiety, and we'll talk about that a little bit later. But I have also heard that patients say that they would rather die than have an ostomy. And I really honestly think it depends on how a person has been informed and educated about the ostomy. It also depends on how the ostomy came about as well. So if we go back to just kind of basic potty training, if you think about a toddler who is learning how to potty-train. Before they are using the pot, you'll see a toddler going into a corner to find privacy and squatting and doing their business. And then they get on the pot, they learn how to use that. And then after that, pretty much for their entire lives, the bathroom behaviors are pretty private.

You don't share that behavior with anybody else, probably until you have a child yourself. So when we're talking bowel movements and things like that, it's already a very private process. So when we're bringing it to the stomach, to the abdomen where people can see it and hear it and smell it, I can see why people have an emotional reaction to that. So for some of our patients who have the need to have an ostomy, the ostomy may be surgery that relieves symptoms for them. If they're patients that have to have frequent trips to the bathroom or have incontinence or spend hours in the bathroom, the ostomy can provide them freedom from those behaviors and then they have a little bit more control over their body and it allows them to do the things that they value. They can do social events and have regular activities that they're a part of.

And so for some patients, they have a more positive reaction because they see that ostomy as something that can be liberating. And then we have some patients who find it shocking and even disgusting and they have a more negative reaction, is probably what you have seen. And for those people, I find that not being fully educated about what to expect with an ostomy or the procedure or just not accepting of the changes that they're going to have to come in adaptations that they're going to have to make with that new anatomy, I find that those patients have more negative reactions.

Scott Steele: So I think it's very well said talking about. Sometimes the timing comes into play here, especially if you have emergent surgery. But for those patients that are going to go elective surgery and may require an ostomy, how do you help those patients prepare for the surgery as well as the potential lifestyle change.

Dr. Jessica Woodford: I've done quite a bit of research about how do we then try to curve some of those negative effects, those emotional effects for an ostomy or ostomates. And part of that is talking to patients about what their expectations are, figuring out if their expectations are realistic, figuring out what their lifestyle is and what kind of lifestyle changes they may have to make. As long as we have those conversations beforehand and patients are prepped for those changes, it seems to dampen the response a little bit more. And people feel like they have a little bit more confidence in taking on the ostomy. Even if it is temporary, they feel like they have a little bit more understanding of what changes and adaptations that they may have to make.

Scott Steele: Can you discuss a little bit more about the prevalence of anxiety and depression among stoma patients?

Dr. Jessica Woodford: Sure. There was a really big study that came out back in, I believe, 2022 that was published that looked at 18 studies and about a little over 3,000 patient records. And it looked at the prevalence of anxiety and depression, your exact question. And researchers determined that the global prevalence for anxiety in ostomy patients was just a little less than half. So we can anticipate that almost half of our patients are going to deal with some anxiety when they have a ostomy surgery. And the prevalence for depression for ostomates, particularly in that study, was a little bit less. About 40% of our patients we can anticipate to have depression or depressive symptoms. With any major abdominal surgery, there's going to be risk for higher levels of post-op anxiety, and it's pretty strongly correlated with pre-op anxiety. So, again, if we can try to assess what the needs are, assess coping strategies, talk about adaptations and adjustments that are going to be needed before we get to surgery, we have better chances of post-operative outcomes being more successful.

There's also a strong correlation with anxiety for women, younger patients, if there's any other comorbidities, lower socioeconomic status. And surprisingly, folks who reside in the northern US region or in the Midwest, those were also found to be correlates for higher anxiety. So if we know that we know who to target a little bit more on the pre-op phase. In my experience, those numbers seem pretty accurate. And for new ostomates, think it's particularly crucial that we talk to those patients before their surgeries, assess for anxiety and depression, treat it before they get into the hospital so we don't have those more negative outcomes post surgically. And then going back to the suicidal ideation, there was another study that came out out of Iran back in 2020 that looked at suicidal ideation of ostomates, and it showed that suicidal ideation was pretty acute in the post-op critical phase and it significantly decreased within six months.

And so I like to not only tell our patients but also just let clinicians know that by the time patients are getting used to their ostomies and want to have a reversal, that is about the time it takes for them to get to have better symptoms as far as their mental health too. That adjustment period is not just for them to adjust to the ostomy, but their mental health improves around that six month mark as well, especially when it comes to suicidal ideation. So they really need support in that post-op phase for those patients who have significant depressive symptoms.

Scott Steele: So you mentioned briefly a little bit about coping strategies. So post-surgery, what coping strategies can help patients adjust to their life with a stoma, whether it's permanent or temporary?

Dr. Jessica Woodford: One of the things that I like to talk about, and it's not necessarily a strategy but more so a concept, is the concept of self-compassion. I hear a lot of negative self-talk from patients when they talk about their ostomies. You'll hear things like, "This is disgusting," or "I feel dirty," or "this is nasty." And so almost as if their ostomy is not a part of their own body. And so I like to remind patients, this is a part of your body, this is a part of you. And so teaching them to practice being kind to themselves, being more patient with themselves, being more understanding with the things that they are challenged with is one of the first things that I try to talk with patients about in trying to cut down on some of that negative self-talk. This is just a practice that I think could be helpful for any patient, not just ostomies.

But other coping strategies. As far as for acute anxiety or pain related to the ostomy, I may have patients create a little bit of a relaxation ritual before their ostomy appliance change. A lot of patients have anxiety around changing their appliance every few days, and so teaching patients grounding techniques can be helpful to have them kind of dampen some of those overwhelming feelings. Grounding helps to manage negative and challenging emotions and focus on the present. It may be helpful for patients to add their pain medications or anxiety medications to that routine. So if they can take those medications 20 to 30 minutes ahead of time, kind of help to get pain and anxiety under control as well as the grounding techniques and then go into their appliance change, they may have a better experience with anxiety and pain.

Another intervention or coping strategy that I use is values work. I talk a lot about what do people value and how can they work within their value system after their surgery. So say a patient says that they value spending time with family or their children or their health or vanity or humor. We may talk about ways in which with their ostomy how can we still meet some of those values? How can we build some resilience around you having this ostomy but still getting to the goals that you have set for yourself based on the values that you told me? So we talk pretty in depth about how we can adapt, what you've been doing, especially when it comes to physical activity or social activities, what things that you need to change or adapt, including how you dress, what foods you're eating, which social activities are safe for you to go to.

Even things like intimacy, if you have a partner or family you want to be around, we talk about how to cope with those changes and what kind of adaptations people may be comfortable with. And so we do a lot of self-guided exposure, a lot of trial and error to figure out what patients are comfortable with. So there's quite a bit of coping strategies that we can help with post-surgery.

Scott Steele: Can you talk about the role of friends and family in the supporting role for patients that are adjusting to a life of a stoma?

Dr. Jessica Woodford: Sure. I think family and friend support is tremendously important. I hear from patients all of the time about how having an ostomy is a very lonely process and it's a lonely experience. And I hear this from so many patients and I wish I could all just group them all together, which I have a plan for that. But it depends on the patient as far as what they want to bring to their family and friends, what they're comfortable bringing to family and friends as far as what they're struggling with or what adaptations they need to make. I find that a lot of patients, especially those who have temporary ostomies, will say that they avoid certain activities because they know that this is going to be reversed and they just don't want to have to deal with people knowing or asking questions. So they kind of put their life on pause for a little bit.

And I would say that you maybe create a script for friends and family that you feel comfortable saying about your ostomy and explaining to people. Whether it's a friend, family or stranger, just have a script ready to explain to them about what's going on. And then having someone close to you that maybe you can open up a little bit more about your ostomy, the challenges. And even the things that you have accomplished with your ostomy, things that you have re-engaged with back into your daily rituals in your life while you have your ostomy. So having a place to share your wins too is also important. So I think that friend and family role is super important. It is a difficult area for us to kind of figure out how much information goes to family and friends just because of the vulnerability that goes along with an ostomy.

Scott Steele: Are there other specific support groups or resources that you can recommend for stoma patients?

Dr. Jessica Woodford: Yes. One of the resources that I've created specifically here at Cleveland Clinic, I have a ostomy group that is running every Friday at 11 AM particularly for ostomates. We discuss everything about ostomies that either are common or not so common. Things from basic education about an ostomy to self-care with an ostomy, social life with an ostomy, body image and intimacy with an ostomy. I bring those conversations to a small space where up to 12 patients can kind of get together, share their experiences, learn. And there's also a stoma nurse who co-facilitates that group with me once a month. So you have not only that support from other ostomates, but you have myself with the expertise in mental health and you have a stoma nurse with the expertise in stoma care. So that is one area that people can gather. But also locally there are support groups. There's the Cleveland Ostomy Association, and information is available for their group. And then others within the region, I think there's an Akron group and other groups out west. And you can visit ostomy.org to look at their particular support groups and others within the region.

Scott Steele: So, Jessica, would you suggest that patients who are going to get a stoma or have a stoma consider seeking professional psychological help? And does that psychological impact of having a stoma diminish over time?

Dr. Jessica Woodford: So I think as soon as a patient knows that they are going to have a stoma, I would say put in a recommendation for behavioral health and have them assessed to see if there are any pre-existing anxiety or depression symptoms. A lot of patients will let you know that they're anxious, and that is a clear indicator to send them over to me. And for others, I think maybe sometimes people don't need us too. I don't want to necessarily make a blanket statement that everybody will need us. If a patient clearly communicates that they're anxious or has some other psychological issue going on, then send them over to us. But I don't think everyone needs to see us. And I do think that the psychological impact of having a stoma diminishes over time for most patients. I do think that it depends on the patient and what their experience with an ostomy has been.

For example, if you've had an ostomy before and say this is your second ostomy, I think your previous experience with an ostomy really dictates your next experience with an ostomy. You go into it with a little bit more experience. You kind of know the appliances. You know how to communicate with the ostomy nurses. So you have a little bit more experience behind you compared to someone who is a new ostomate. The other situation in which I'm not sure about the psychological impact diminishing over time is someone who maybe had an ostomy as a child and had a rough experience as a child and didn't necessarily have the proper support around the ostomy at that time. So in those cases, I think the psychological impact can be different, but I think for most people it does diminish over time.

Scott Steele: So you mentioned a little bit about some of the things that you're doing here, but are there any other new treatments or innovations on the horizon that maybe show some promise in helping stoma patients?

Dr. Jessica Woodford: Yes. Something I'm really excited about, that I just learned actually from one of our surgeons, I think it is out of Cedars-Sinai, there is a prehab for IBD patients. There's this model that patients who are going into abdominal surgery, they will meet with several different types of professionals before their surgery. So about a month before surgery, they do this prehab where you meet with the surgical team, you meet with nutritionists or dieticians, physical therapists, and then there's also a team of mental health professionals, whether it be social workers or psychologists, and they prepare you for surgery through optimizing your nutrition and strengthening your body and your endurance prior to going into that surgery. I think that is a model that is wonderful and provides wraparound treatment for patients. And so if we can duplicate that prehab model here, I would love to do that. That is something that I think is so beneficial for our patients and something we see in the literature that would be helpful as well.

Scott Steele: So I would be amiss to not ask you. Are there other types of colorectal related conditions that you're able to help patients navigate with? I know we're talking about stomas today, but what else are you seeing our patients for?

Dr. Jessica Woodford: So, yeah. I see a lot of colorectal surgery patients, whether they're having a stoma at the end of the day or not. I see patients who are dealing with multiple surgeries and the trauma that can come behind that. I see patients dealing with pain from their surgeries and mood-related symptoms to having any type of surgery. Or if they had preexisting mental health conditions unrelated to their health but it is now impacting their health, I see those patients. And then things like fistulas or prolapse and other kind of GI issues that are impacting a patient's functioning, say somebody who has chronic constipation and has to learn how to relax or untune so that they can function throughout the day and kind of let their GI tract do what it's supposed to do. We have different interventions for those patients as well. So I see those patients along with young onset colorectal cancer patients is another big population that I see as well.

Scott Steele: So now it's time for our quick hitters, a chance to get to know you a little bit better. So first of all, what is your favorite sport?

Dr. Jessica Woodford: I would say college football.

Scott Steele: Do you have a favorite team?

Dr. Jessica Woodford: The Ohio State Buckeyes.

Scott Steele: Ah, I was hoping you'd change your answer. So what is your favorite food?

Dr. Jessica Woodford: If I had to pick a cuisine, it would be a Mediterranean diet. I love Mediterranean food.

Scott Steele: Fantastic. And do you have a first car that you'd like to share with us?

Dr. Jessica Woodford: My first car is also my current car, I've had so many of them, a Honda Accord.

Scott Steele: Fantastic. And finally, if you were to garner one, what would your superhero power be?

Dr. Jessica Woodford: That's a good question. I think if I can have one superpower, it would be to be invisible. I think to be in certain rooms and be a fly on the wall and not be detected is a superpower I would adopt.

Scott Steele: Fantastic. So do you have a final take home message for our listeners?

Dr. Jessica Woodford: Yes. What I would say to patients coming into the colorectal surgery department who may or may not need an ostomy but it is part of the conversation, I would say that speaking to a psychologist about the impacts of that type of surgery and all of the additional things that come with that, I think it would be beneficial. Come and talk to us, even if it's a one-time visit and doing a consultation. I think it would be beneficial for folks to, one, talk to a psychologist if you haven't. But also see what kind of things that you may be able to change just in one visit, things that you can learn in one visit as well.

Scott Steele: That's fantastic. And so to connect with Dr. Woodford, or the colorectal surgery team at Cleveland Clinic. Please call the Digestive Disease Institute at 216.444.7000. That's 216.444.7000. You can also visit our website at clevelandclinic.org/digestive. That's clevelandclinic.org/digestive. Dr. Woodford, thanks so much for joining us on Butts & Guts.

Dr. Jessica Woodford: Thanks for having me.

Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.