For patients who are about to receive an ostomy, some may be understandably nervous about the impending change to their lifestyle.
As a result, they may have many questions including; What is it like post surgery? Where can I find additional support? Can I still go out, be social, and even engage in sexual relations? What if my family has questions? How do I answer them?
Listen as Melissa Hiscock, RN discusses what to expect when living with an Ostomy.
Selected Podcast
Living with an Ostomy
Featured Speaker:
Learn more about Melissa Hiscock, RN
Melissa Hiscock, RN
Melissa Hiscock, RN is a certified Wound, Ostomy, and Continence Nurse at Roswell Park Comprehensive Cancer Center.Learn more about Melissa Hiscock, RN
Transcription:
Living with an Ostomy
Bill Klaproth (Host): Some patients are understandably nervous about the change to their lifestyle after ostomy surgery. So, what to expect? Here to talk about living with an ostomy is Melissa Hiscock, a registered nurse at Roswell Park Comprehensive Cancer Center. Melissa, thanks for your time. So, having an ostomy creates a considerable lifestyle change. So, what are patients’ biggest concerns after ostomy surgery?
Melissa Hiscock (Guest): I think from my experience in dealing with our ostomy patients after surgery and through our support group that we have here, one of the biggest struggles is getting back to their new normal--whatever their new normal is going to be, and getting out and back in public and doing the things that they used to do. It’s a big leap and it takes baby steps for them to get used to. They have different things to worry about and a different focus. So, getting over all those fears of possible leakage and the possibility of somebody noticing their pouch underneath their clothing, things like that. Once they’re over that and they realize, “I can do this and life does go on,” they lead a very full life and get back to their normal activities that they did before surgery. Generally, they can do that very quickly if they’re provided the right support through healthcare providers and their family, they can get back to their normal activities as soon as they’re cleared from their general surgery precautions post-op.
Bill: So, getting back to new normal as you said, how long does that generally take for somebody? Is that a few weeks before or a few months before they really feel comfortable?
Melissa: Here at Roswell, we see our patients before surgery and prep them and educate them on the things to expect so they’re more prepared when they walk in the door on the day of surgery. They’re ready to--I want to say “rock and roll” after surgery and they want to learn how to take care of themselves and be independent as soon as possible. A timeline--every patient is different. I had a gentleman, he was 80 years old and he was back and jogging very quickly. He was doing his normal run two weeks after surgery with his pouch. Other folks take a little bit longer and it could be that they’re running into different complications or it could be more of a coping problem which we then provide more support for. But mostly our patients are very successful and very quickly and in a month to six weeks, they’re ready to get back to their normal activities.
Bill: So, it does depend on the individual but that’s good news to hear that.
Melissa: Yes.
Bill: So, let’s talk about some other questions. What about dietary changes?
Melissa: Depending on the type of surgery, anytime really that a patient has surgery that involves the bowel or the GI system, they’re going to have some dietary changes. Initially, they’re going to want to be careful when they eat a lot of roughage--things that we don’t digest well normally like salads, corn, popcorn, peanuts, raw vegetables--we instruct the patients to keep those to a minimum. If you’re going to have a salad, have a small salad and make sure you chew it very well. And you want to drink your fluids after you eat, so you’re not filling up on water. So, the big thing is chew, chew, chew. After the post-op period, the six weeks post-op healing time, they can get back to their normal diet and reintroduce things gradually.
Bill: Okay. So, chew, chew, chew at the beginning.
Melissa: Yes.
Bill: Good advice. So, you were mentioning before there is no leakage and that is a big concern. So, that means then no odor, because I imagine odor is another concern.
Melissa: Our goal always is that the patient has no leakage problems but in the lifetime of a patient with an ostomy, they’re pretty much going to run into a problem at some point. If there are no leakage, there are no problems, there should be no odor. Everything--the pouches are odor proof and water proof. The only time there should be odor is when someone is in the bathroom providing care for themselves, and that’s normal--everybody else stinks in the bathroom. That should generally be the only place that there should be an odor issue. Other than that, if there is an odor at other times, there is a problem that we need to solve and that’s when we ask that that person reach out to an ostomy nurse or the doctor for help.
Bill: Right. You mentioned that these are water proof. So, what about going in the water and wearing a bathing suit? That’s okay then?
Melissa: Yes. Swimming, going in the hot tub, taking a bath, taking a shower, those are all fine because the equipment is waterproof. And, yes, commonsense tells us anytime we submerge ourselves in water, an adhesive isn’t going to hold up. We remind our ostomy patients of that fact and to just go ahead and go swimming, do those things, but just make sure that you keep a close eye. You might want to change your pouch and sooner.
Bill: You mentioned an example about a gentleman who resumed his running regimen. So, you can pretty much go back to all of your normal fitness activities after the surgery.
Melissa: Yes, definitely. We have a gentleman that plays hockey. He does wear protective gear but he plays ice hockey. Another gentleman that, I think he does taekwondo—but, again, with protective gear. Go ahead and do what you want to do.
Bill: And this holds true then for sexual relations?
Melissa: Yes. The patient will have to be cleared by their surgeon when they can become intimate again. And sometimes, surgeries do have an effect on intimacy, and it’s important that the care provider does discuss those complications and expectations after surgery. But, yes, intimacy is important for all of us, and we encourage our patients to talk about it and seek help if they need it.
Bill: Right. Well, this is all very good news. You mentioned before about someone in the washroom. How often do you need to empty and clean your pouch?
Melissa: So, there are three different types of primary ostomies, I guess, I could say. There is a urostomy which collects urine. That’s when the bladder is removed. That will need to be emptied more frequently than the other types of ostomies. That depends on a patient’s medications and how much they drink. They will usually have to empty their pouch every two to three hours. At night time, they connect to a larger bag so they don’t have to wake up during the night; they can sleep through the night. For the other two that collect stool, an ileostomy is part of the small intestine, so this will have more liquid output and the patient with an ileostomy will have to empty their pouch roughly about an hour after they eat. And then, it could a couple other times throughout the day. So, it could be up to six times a day. Then, a person with a colostomy which is part of the large intestine which has more solid output, they empty less frequently--maybe once or twice a day. Generally, for changing the equipment, taking everything off of the skin, cleaning the skin and putting new equipment on, that is usually done twice a week.
Bill: Okay and for friends and family that have question about the things that we’re talking about today, what’s the best way to answer those?
Melissa: It’s up to that person, you know. They don’t have to tell anybody what’s underneath their clothing, if they want to keep that to themselves. If they have to explain that, “Yes, I wear a pouch. I had to have surgery.” They could put it that, “Instead of using the bathroom the normal way, I have to evacuate into a pouch or have a bowel movement or urinate into a pouch.” But, again, they don’t have to tell anybody, you know? They can keep that to themselves. It’s up to that particular person.
Bill: You talked about an ostomy support group. Can you tell us a little bit more about that?
Melissa: Yes. Here at Roswell, we have a support group. We meet once a month. We’re a very successful group. They are a wonderful inspiration to us, the ostomy nurses here at Roswell, and they share a lot of tips and tricks. They do share some troubling times. They share stories about--when they have to come back, it’s not all about their ostomy, it’s also about their cancer diagnosis and their journey and the things that cause them anxiety or the triumphs they’ve had. It’s a great group, a great support group. We do offer it to community members as well. If they are not a patient at Roswell, they are welcome to attend our group. There are other support groups in the area. Patients can Google them and they’ll find different support groups but I think ours is the best, though. I might be a bit biased.
Bill: Well, that’s so wonderful that you offer that, and thanks for explaining that to us. Melissa, thank you for your time today and talking to us about living with an ostomy. For more information, visit www.rowellpark.org. That’s www.roswellpark.org. You’re listening to Roswell Park Comprehensive Cancer Center Cancer Talk. I’m Bill Klaproth. Thanks for listening.
Living with an Ostomy
Bill Klaproth (Host): Some patients are understandably nervous about the change to their lifestyle after ostomy surgery. So, what to expect? Here to talk about living with an ostomy is Melissa Hiscock, a registered nurse at Roswell Park Comprehensive Cancer Center. Melissa, thanks for your time. So, having an ostomy creates a considerable lifestyle change. So, what are patients’ biggest concerns after ostomy surgery?
Melissa Hiscock (Guest): I think from my experience in dealing with our ostomy patients after surgery and through our support group that we have here, one of the biggest struggles is getting back to their new normal--whatever their new normal is going to be, and getting out and back in public and doing the things that they used to do. It’s a big leap and it takes baby steps for them to get used to. They have different things to worry about and a different focus. So, getting over all those fears of possible leakage and the possibility of somebody noticing their pouch underneath their clothing, things like that. Once they’re over that and they realize, “I can do this and life does go on,” they lead a very full life and get back to their normal activities that they did before surgery. Generally, they can do that very quickly if they’re provided the right support through healthcare providers and their family, they can get back to their normal activities as soon as they’re cleared from their general surgery precautions post-op.
Bill: So, getting back to new normal as you said, how long does that generally take for somebody? Is that a few weeks before or a few months before they really feel comfortable?
Melissa: Here at Roswell, we see our patients before surgery and prep them and educate them on the things to expect so they’re more prepared when they walk in the door on the day of surgery. They’re ready to--I want to say “rock and roll” after surgery and they want to learn how to take care of themselves and be independent as soon as possible. A timeline--every patient is different. I had a gentleman, he was 80 years old and he was back and jogging very quickly. He was doing his normal run two weeks after surgery with his pouch. Other folks take a little bit longer and it could be that they’re running into different complications or it could be more of a coping problem which we then provide more support for. But mostly our patients are very successful and very quickly and in a month to six weeks, they’re ready to get back to their normal activities.
Bill: So, it does depend on the individual but that’s good news to hear that.
Melissa: Yes.
Bill: So, let’s talk about some other questions. What about dietary changes?
Melissa: Depending on the type of surgery, anytime really that a patient has surgery that involves the bowel or the GI system, they’re going to have some dietary changes. Initially, they’re going to want to be careful when they eat a lot of roughage--things that we don’t digest well normally like salads, corn, popcorn, peanuts, raw vegetables--we instruct the patients to keep those to a minimum. If you’re going to have a salad, have a small salad and make sure you chew it very well. And you want to drink your fluids after you eat, so you’re not filling up on water. So, the big thing is chew, chew, chew. After the post-op period, the six weeks post-op healing time, they can get back to their normal diet and reintroduce things gradually.
Bill: Okay. So, chew, chew, chew at the beginning.
Melissa: Yes.
Bill: Good advice. So, you were mentioning before there is no leakage and that is a big concern. So, that means then no odor, because I imagine odor is another concern.
Melissa: Our goal always is that the patient has no leakage problems but in the lifetime of a patient with an ostomy, they’re pretty much going to run into a problem at some point. If there are no leakage, there are no problems, there should be no odor. Everything--the pouches are odor proof and water proof. The only time there should be odor is when someone is in the bathroom providing care for themselves, and that’s normal--everybody else stinks in the bathroom. That should generally be the only place that there should be an odor issue. Other than that, if there is an odor at other times, there is a problem that we need to solve and that’s when we ask that that person reach out to an ostomy nurse or the doctor for help.
Bill: Right. You mentioned that these are water proof. So, what about going in the water and wearing a bathing suit? That’s okay then?
Melissa: Yes. Swimming, going in the hot tub, taking a bath, taking a shower, those are all fine because the equipment is waterproof. And, yes, commonsense tells us anytime we submerge ourselves in water, an adhesive isn’t going to hold up. We remind our ostomy patients of that fact and to just go ahead and go swimming, do those things, but just make sure that you keep a close eye. You might want to change your pouch and sooner.
Bill: You mentioned an example about a gentleman who resumed his running regimen. So, you can pretty much go back to all of your normal fitness activities after the surgery.
Melissa: Yes, definitely. We have a gentleman that plays hockey. He does wear protective gear but he plays ice hockey. Another gentleman that, I think he does taekwondo—but, again, with protective gear. Go ahead and do what you want to do.
Bill: And this holds true then for sexual relations?
Melissa: Yes. The patient will have to be cleared by their surgeon when they can become intimate again. And sometimes, surgeries do have an effect on intimacy, and it’s important that the care provider does discuss those complications and expectations after surgery. But, yes, intimacy is important for all of us, and we encourage our patients to talk about it and seek help if they need it.
Bill: Right. Well, this is all very good news. You mentioned before about someone in the washroom. How often do you need to empty and clean your pouch?
Melissa: So, there are three different types of primary ostomies, I guess, I could say. There is a urostomy which collects urine. That’s when the bladder is removed. That will need to be emptied more frequently than the other types of ostomies. That depends on a patient’s medications and how much they drink. They will usually have to empty their pouch every two to three hours. At night time, they connect to a larger bag so they don’t have to wake up during the night; they can sleep through the night. For the other two that collect stool, an ileostomy is part of the small intestine, so this will have more liquid output and the patient with an ileostomy will have to empty their pouch roughly about an hour after they eat. And then, it could a couple other times throughout the day. So, it could be up to six times a day. Then, a person with a colostomy which is part of the large intestine which has more solid output, they empty less frequently--maybe once or twice a day. Generally, for changing the equipment, taking everything off of the skin, cleaning the skin and putting new equipment on, that is usually done twice a week.
Bill: Okay and for friends and family that have question about the things that we’re talking about today, what’s the best way to answer those?
Melissa: It’s up to that person, you know. They don’t have to tell anybody what’s underneath their clothing, if they want to keep that to themselves. If they have to explain that, “Yes, I wear a pouch. I had to have surgery.” They could put it that, “Instead of using the bathroom the normal way, I have to evacuate into a pouch or have a bowel movement or urinate into a pouch.” But, again, they don’t have to tell anybody, you know? They can keep that to themselves. It’s up to that particular person.
Bill: You talked about an ostomy support group. Can you tell us a little bit more about that?
Melissa: Yes. Here at Roswell, we have a support group. We meet once a month. We’re a very successful group. They are a wonderful inspiration to us, the ostomy nurses here at Roswell, and they share a lot of tips and tricks. They do share some troubling times. They share stories about--when they have to come back, it’s not all about their ostomy, it’s also about their cancer diagnosis and their journey and the things that cause them anxiety or the triumphs they’ve had. It’s a great group, a great support group. We do offer it to community members as well. If they are not a patient at Roswell, they are welcome to attend our group. There are other support groups in the area. Patients can Google them and they’ll find different support groups but I think ours is the best, though. I might be a bit biased.
Bill: Well, that’s so wonderful that you offer that, and thanks for explaining that to us. Melissa, thank you for your time today and talking to us about living with an ostomy. For more information, visit www.rowellpark.org. That’s www.roswellpark.org. You’re listening to Roswell Park Comprehensive Cancer Center Cancer Talk. I’m Bill Klaproth. Thanks for listening.