Speaker 1In this class we're going to begin our discussion of rehabilitative care for the ostomy patient. We're going to kind of look at rehabilitation from a big picture perspective. What are our goals? What are key factors impacting on that individual's ability to adjust to life with an ostomy? How do we assess their progress? And what are the general interventions that make a difference? So as we said we're going to talk about rehabilitation, adaptation goals, the impact of an ostomy on the individual's quality of life. This is a big operation, this is a big change. We want to talk about factors that impact on any individual's ability to adapt, to adjust positively, and our assessment parameters so that we can determine how well a patient's doing, kind of where they're to in the process, and how we can help them move forward. So obviously our goal for every one of our patients is that they be able to incorporate the ostomy into their lifestyle, into their usual activities, their work, their social activities, their sexual relationship with minimal negative impact. We want it to be a nuisance, not something that changes where they go, what they do, and who they interact with. Now fortunately, this is the good news portion, the data shows that quality of life for an individual with an ostomy is exactly the same as it is for an individual without an ostomy, so long as there are no pouching or peristomal skin issues. Now if the patient does have persistent issues with maintenance of a secure pouch seal, with peristomal skin complications, that has a very negative impact on their quality of life. But major implications for us, if we can get that patient marked pre-operatively so we get the best location possible, if we can establish a secure pouching system post-operatively, if we can assure long-term follow-up so that each step down the road, if there's a problem, it can be identified, it can be managed, then we can expect to get this patient back into their usual life with minimal negative impact. And that's right back to our goal at the top of the slide. Now obviously an ostomy is a big deal, you never ever want to minimize the impact of an ostomy. First of all, it's changed the way my body looks, so now instead of having an anus that is out of sight and generally out of mind, now I have a stoma that's front and center. I can't ignore that. It's very obvious to me. Anytime I go to the bathroom and I take down my clothing, there's my pouch, there's my stoma. So big change in body appearance and even more significantly, a change in elimination and a change in continence. So we acquired continence when we were toddlers, when we were 2, 3, 4 years of age. We don't even think about it. But all of a sudden, something happened with bowel function, with pathology, with bladder function, with pathology, and now my stool exits through an opening in my abdominal wall or my urine exits through a stoma on the abdominal surface. And continence is totally dependent on a secure pouch seal, so I have to learn all kinds of new skills. And they're skills I don't even want to learn, but I have to learn them to be able to reestablish modified continence to get back into my life. So it's a big deal. And most people tell us that when they had ostomy surgery, initially it was very traumatic. I've talked to so many people who have told me, you know, when I first found out I was going to have to have that or when I woke up from surgery and I realized, oh my God, I have a pouch, I have a bag, I have an ostomy. They're thinking, I'm not going to be able to go back to work. I'm not going to be able to go out with my friends. I'm never ever going to have sex again. My life as I knew it is over. So they tell me it was very traumatic. It took time for me to come to terms with this, for me to get used to this, for me to figure out how to deal with this. And if people are telling you this is traumatic, that has major implications for us because trauma in and of itself causes increased anxiety among most individuals. Among some individuals, it just creates this sensation of emotional numbness, like I'm swimming under water. I don't really hear what you say. I can't retain what you're teaching me. So it's very common for people to tell us, you know, I know you were teaching me after surgery in the hospital, but it was so hard for me to remember anything. When I got home, it was like I forgot at least half of everything you told me. Home health nurses tell us the same thing. Patients get home, you thought they were doing well in the hospital. They got home, they couldn't remember the vast majority of what you taught them in the hospital. So anxiety makes it harder to learn, harder to retain. That sense of numbness where everything's happening at a distance, everything's being filtered, interferes with my ability to learn, to cope, to manage. We're going to have to repeat things. We're going to have to be very patient. You're going to have patients who are so anxious that it's all they can do to get through a pouch change. And they're constantly asking, well, what if this happens? What if that happens? So we need to be very patient. We need to keep things very simple. We need to be reassuring. And we need to repeat things over and over until patients are able to incorporate and integrate what we're teaching them, what we're telling them. The other thing is we know that every person is an individual and their response is individual. So we're going to see some people who seem to adapt relatively quickly. They move through the process much faster than we would expect them to. And then we're going to see other individuals who really get stuck. They get stuck in the anger point. They get stuck at the level of depression. They have a really hard time moving forward. So we have to be aware of individual differences and we have to accommodate those. So what are the factors that make a difference? When I'm assessing a patient what things should I be alert to that I know will have an impact on their ability to adapt and to move through the rehabilitation process? And the first is their pre-op personality and coping skills. So you know, all of you know people who are amazingly resilient. They've had to deal with so many things and they just seem to bounce back. And a lot of times when you look at those people more closely you find they have a pretty strong sense of self. They see themselves as survivors. Sometimes they use those words. I've had people tell me, "I don't know how I'm going to get through this but I'm sure I will because I'm a survivor. I've gotten through all kinds of things. So I'll get through this too, somehow, some way." So you'll hear that from patients. You'll have other patients who are much less resilient. And they feel overwhelmed relatively easy. And so from those patients you might hear things like, "I'll never be the same. I'll never get used to this. My life is essentially over. I mean, I know I have to have it. I don't have a choice. But I just can't see where I'm ever going to be really okay with this." So that's a very, very good diagnostic statement as well as a reflection of how they're feeling. So pay attention to what patients say. Also, you'll find that patients who adapt well have great ability to reach out to others, to ask for help when they need help. And that results in them having a team on their side. So I remember a patient I had who had surgery many years ago. There was very little equipment available, but she was a very positive person. And she was very proactive, and she could ask for help and enlist people. And so even though the resources available to her were very limited, she came up with an effective system because she would say to other people, "So do you think this would work? Have you ever tried this? What recommendations do you have for me?" So pay attention to a person's ability to ask for help. For people who have a really hard time asking for help, it's going to be more critical for us to be there to reach out to them. Okay. So the first thing is to help them identify options, to be their guide through a difficult process. The second thing that can make a difference is the reason for surgery. Is this surgical procedure going to improve their quality of life, improve life expectancy? And how do they see it? So interestingly, when we do ostomy surgery for cancer. Some people equate that ostomy with survival. They're like, "You know, thank God they were able to do this surgery. Thank God for this ostomy. It's why I'm alive today. They were able to take out my rectum, take out the cancer, cure me." I've had patients who said, "I consider that I have two birthdays, the day I myself was born and the day I had this surgery. Because it gave me back my life. It took away the cancer. It gave me back my life." I've had patients who said, "Thank goodness for this ostomy because I was so sick with that ulcerative colitis. I was so sick with Crohn's disease. I couldn't do anything. I couldn't go anywhere. I was never any fun to be around because I was always miserable." And you know, even the week after surgery, I noticed I was feeling better, getting that colon out. It made all the difference in the world to me. I'm so grateful because now I'm well again and I can do the things I want to do. But other people will see that ostomy as a symbol of the cancer. I had cancer, now I have this ostomy. It's been so hard. Every time I think about that ostomy, it reminds me that I had cancer and it could come back. So not only do you need to know why they're having surgery and the expected impact on their physical quality of life, you need to know how they see it. That will be impacted also by any prior experience they've had with ostomy patients and how they did. So you know, you will know why the patient is having surgery. But what you need to ask the patient is, how do you think this surgery is going to impact your health, your quality of life? Where do you see yourself in three months and six months? Do you think you'll be feeling a whole lot better? You think you'll be back into your usual activities? What do you see looking down the road? Also helpful to say, have you ever known anyone who has an ostomy? And if they say yes. Very helpful to say, so how did they do? So think about the difference if I was working with someone and after I'd worked with them for many years, I found out they had an ostomy. Maybe I told them I'm going to have to have surgery. They're going to take out at least part of my colon. I don't know how much. They might have to take my rectum. I might have to wear a bag. And what if that person said, well, I've had an ostomy, I've been wearing a bag for twenty years. I do great. I go where I want to go. I do what I want to do. I eat what I want to eat. It hasn't stopped me from doing anything that mattered. In fact, I'm so much healthier since I had my operation. Well that's going to tend to give me a very positive perspective, a positive outlook. But what if the only person I know who had an ostomy is a distant relative and what I seem to remember is people talking about the fact that she or he always smelled bad? And I've been carrying that negative connotation for all these years in my subconscious. So critically important for us to ask these questions, to hear these stories, to hear these perceptions, and then to correct anything that's not accurate. So if I hear from someone who says, "The only person I know who had an ostomy, whew, it wasn't good. They had major problems with odor. Nobody wanted to be around them. They kind of became a recluse because of it." I don't want to just hear that. I want to say, "Gosh, that's really sad. I bet they had their ostomy a number of years ago when the pouches we had weren't odor-proof." I don't want to hear that. I don't want you to get stuck in that story and think that that's what's going to happen with you. I want you to know we've made tremendous progress. And now all of our pouches are completely odor-proof and very flat. So you're not going to have the issue of odor. And the last thing we want is for you to become a recluse. Our whole goal is to help you learn how to manage this. Just so you get back into your life. So address those issues head on. Be very open with your patients. Be honest with them. If you hear something that worries you, tell them, "Gosh, I really hate to hear that. That worries me because I know you're kind of programmed to think that's what life with an ostomy is all about. And I want you to know that's no longer true." The second major impact is the response from their family and friends. How much support do they have? So think about your life as a nurse. If you walk into a patient's room, now this is pre-COVID obviously, but if you walked into a patient's room and you kind of had to create a pathway among the family and friends, oh yes, it could sometimes be annoying, but it was also very positive because you knew that person in the bed had time. They had tons of support. They had all kinds of people walking this journey with them and encouraging them and telling them, "You know what? We're going to manage whatever we need to manage. We just want you to be okay. We love you. We care about you. We're so sorry you've been sick. We just want you to get through this surgery and then we're going to learn what we need to learn. We're going to manage what we need to manage. We just want you well again." Now contrast that to the patient whose room you walk into and there's no one there. They're hardly ever on the phone. They're very isolated. Obviously it's going to be much harder for them because they're not part of a team. They are the team. And it can be much more overwhelming to someone who's already isolated at baseline. So pay attention to how much support they have. Very helpful to say, "Who helps you? Who's your support system? Is it family? Is it friends?" You want to see if they can readily identify the people that matter to them. You might want to ask them, "Have you been able to talk to the people around you about your surgery? Have they been supportive?" You need to know that. You're a part of their support system but you need all those other people to be able to talk to you. You want to see if they can readily identify the people that matter to them. You're part of their support system but you need all those other people to be able to talk to you. You need to know that. to how the nurses react. patients say to me, that night nurse, she doesn't like these things. She doesn't like taking care of these. And if I say, well, how do you know that? It's like, well, she always says, oh, I think they can empty it next shift. I don't really think it needs to be emptied now. She's always avoiding it. And I remember one patient who told me about a staff member she appreciated so much. Now this patient was an elementary school principal. She was kind of tough. That was her persona. She acted tough. She was very private. So she had a good support system, but she was very private. So even her support system was kind of held at a little bit of a distance. And she told me before she went home, she said, you know, all the nurses have been great, but I particularly appreciate this. And I said, well, you know, I'm very private. So it's hard for me to get on my call light and say I need help emptying my pouch because who's hearing me? She's like, he never makes me do that. She said he always comes. And when he's checking on me, he checks my pouch the whole time he's talking to me. So it's hard for me to get on my call light and me like this is no big deal. And he'll say, you know what, I think it'd be a good idea if we empty your pouch before dinner. So let me finish making rounds and I'll be back to help you. She's like, I never have to ask. He's always there. And he makes it like, here's your Kleenex. He makes it like no big deal. And that makes me feel like, okay, maybe I can get to that point where it's no big deal and where I'm okay managing and going back and forth. I'm going back to my life. So be aware of that. Also be aware of potential cultural and religious issues. So we know that individual from Muslim and South Asian cultures, many of them were raised with the concept of clean hand, dirty hand. So clean hand is for eating, is for social interaction. That's the hand you use to shake other people's hands. And then your dirty hand is used for personal hygienic care, for wiping your bottom. And you would never use your clean hand to do that. So obviously, it's hard for them to do ostomy care because they want to keep their clean hand clean. They don't want that hand involved in cleaning poop. So we need to be able to talk to them about that. Would it help to wear gloves? Do we need to look at a one-handed approach to ostomy care? We need to say to them, is this an issue for you? I know it is for some people of the Muslim faith. Is that an issue for you? How can we work this out? What would make you feel more comfortable? Because that's our goal for you to feel more comfortable. Also, for some patients who have prayer rituals, it's helpful if the ostomy can be cited on the left side because it makes it easier for them to do their prayer rituals and their cleansing rituals. Now, we're not going to know all the cultural, all the religious issues out there. But if we're working with a patient from a different culture, we know they're from a different faith, we can always say to them, is there anything that we should be thinking about related to your culture, related to your religious faith? Are there things that we need to address in ostomy care and ostomy site location if I'm talking to the patient preoperatively? We need to actively seek input so we make this as comfortable as possible for the individual. And then we need to think about developmental status. We need to think about the child's age and issues. And of course, you all took growth and development. I'm not going to drag you through that whole course, but I'm just going to hit the high spot. So when we're providing care for a neonate, for an infant, obviously we're teaching the parents. We're not teaching the baby. We need to be very alert to the fact that these parents have a lot on their plate. First of all, no one expects when they get pregnant that they're going to have a baby. Everyone expects, hopes, wants their baby to be perfect. Ten fingers, ten toes, everything normal, everything working. And now they have a baby whose bowel didn't develop correctly, whose urinary system didn't develop correctly. And they have an ostomy. And they're trying to come to terms with the fact that their baby has a birth defect. Doesn't that say awful? Nobody wants anything with a defect. And that's what it's labeled, a birth defect. So they have to grieve for loss of the perfect baby before they can come to terms with the baby they got. Plus it's overwhelming to think what else is going to be required. What additional surgical procedures are going to be needed? Long term, is my baby going to be okay? Is he or she going to be normal? Are they going to be like the other kids? And now you're here and you want to teach me how to take care of this ostomy? I'm so overwhelmed. I can't even process what you're saying to me. So a lot of support is needed for these parents and repetition and recognition of everything they're going through. Now what about school age kids? Well, in general, school age kids should be able to do basic ostomy care independently. They're at the age where they can dress themselves, they can toilet themselves, they can feed themselves. They're going to school. So we want to help that child achieve independence. We want to simplify the pouching procedure. If their parents are very protective, we want to intervene a little bit and say, you know, it's really going to be important for Jimmy to be able to do this himself. Because all the kids he's going to school with toilet themselves. So he needs to be able to either swap out his pouch or empty his pouch or whatever. And then teens, of course, are going to have major issues with body image. It's so hard for a teenager to be different. Nobody wants to be different. They want to be like everybody else. They don't want a change in the way their body looks. They don't want to change in the way their body functions. They don't want to change in what they can eat, where they can go, what they can do. They may have a lot of concerns about clothing and dating. Some of them may be sexually active, and they might have questions and concerns about that. We're always trying to hear from the patient what their concerns are, meet them where they are, and help them take needed steps forward. So that's what we want to do with a teenager. When you think about managing this, I know it's not going to be hard for you to learn the basics, but for most kids your age, it's a big adjustment dealing with an ostomy and dealing with having to wear a pouch. How are you feeling? What are your concerns? When you think about going back to school, what worries you? Were you dating before this happened? What are your concerns about that? For young adults, you think when you meet another young adult, a lot of you are in this developmental stage. It's considered in general 20 to 45. So when you meet somebody, what are your questions to them? What kind of work do you do? So you ask them about their job. Are you married? Are you in a relationship? Do you have kids? So their family, what do you do for fun? Are you into music? Are you into sports? Are you into hiking and camping? Those are the things that make up a young adult's life. Their job, their career, their relationships. And their social activities. And so they're going to have a lot of concerns related to those three things. Am I going to be able to resume my job? Are there any adaptations I'll have to make? What about the things I like to do for fun? Can I still hike? Can I do mountain climbing? Can I run? Can I travel? What are the limitations? And what about relationships? What about sex? How am I going to manage that? And how do people react to somebody who has a bag? I'm worried about that. So again, you're going to say to that person, this is a huge adjustment. really tough for someone at your age to be dealing with this. How can I help you? Older adults have different issues. Some older adults have dependence/independence issues. Some of them are in assisted living already. Some of them are still living by themselves, but they have adult children coming over to pay their bills, to get food ready, put it in the freezer, to help with heavy housecleaning. So they're borderline independent. And so a common question from patients, from families is, "Is this going to change my ability to take care of myself? Is dad still going to be able to live on his own? Is he going to need help with this?" And we want to be sensitive here. We don't want to just reassure people it'll be fine. Here's reality-based feedback. If this person's been living independently, caring for themselves, barring unforeseen complications, we expect them to essentially return to that baseline. If they were borderline, yes they were living independently, but they required a lot of assistance, then we hope they're going to get back to where they were at baseline. But it's common for surgery, for an ostomy, to knock them down a little. So sometimes this surgery, this ostomy might move them from independence to the need for assisted living. So you want to be honest in giving feedback. If this older adult has any cognitive impairment, then it's going to be more difficult for the patient to learn self-care. So we want to be aware of any diagnosis of early Alzheimer's, any cognitive impairment. A lot of times if you ask a patient, "So how's your memory? Are you having any problems with your memory?" I'm asking because, of course, we're going to be teaching you how to do this. A lot of times they're pretty honest. They'll say, "Oh, my memory. It's not what it used to be. I'll do my best, but you're probably going to have to say everything to me a bunch of times. I think I can learn it, but it's going to take a little while." So you want to assess cognitive status, ability to learn, ability to retain, and something we sometimes don't think about is the impact of a fixed income. So some of our patients are very worried about the cost of supplies, and they want to know, like, for some of my patients, their first question is, "Does Medicare cover that? Does insurance cover that? How much am I going to have to pay out of pocket?" And finally, a critical factor in patient adaptation is the help that is available. Am I on my own? Am I in a hospital where they don't really have an ostomy nurse? All the nurses are doing their best, but nobody really has the answers to my questions. Do I go home and I've got home health, but again, there's nobody with real expertise in ostomy care, and I'm just kind of fumbling along on my own? Well, that's going to have a very negative impact on my quality of life, on my ability to adapt, on my rehab. But if there's an ostomy nurse who meets with me pre-op and who says, "We have a team, we're going to be working with you after surgery. We're going to teach you the things you need to know. We'll show you where to get supplies. You'll always have someone to call." Think about the difference that makes. It's like, "Okay, I have a guide person. They're going to walk me through this. It's not all on me." That makes me feel better immediately. So having an ostomy nurse there makes the ostomy much more manageable and less threatening. An ostomy nurse is going to push me. Even when I don't want to participate, that ostomy nurse is going to nudge me, cajole me, coax me into doing more than I want to do so that I do achieve basic mastery of self-care. And what we know is basic mastery of self-care is associated with enhanced quality of life. So every every time you push me, you're helping me. You're moving me in the right direction. So we need to provide initial education regarding self-care in the hospital, but we know that patients in the hospital are under a lot of stress: physical stress, emotional stress. They're dealing with things they have to learn, but they're also dealing with their emotional response to the ostomy. Haven't you had patients who said, "I just can't even look at it right now? I can't think about it right now. I'll try to do more tomorrow." Even if I seem to be doing well, how much is really sticking? You don't know, but home health nurses will tell you not as much as you think. So you always want to arrange for home health care. You always want to arrange for long-term follow-up. You always want to arrange for long-term follow-up in an outpatient clinic. And just a reminder, we've got to be there to establish a secure pouching seal to manage any issues because pouching difficulties, peristomal skin complications, are associated with negative quality of life, a negative impact on quality of life, failure of adaptation. We're not the only ones that can help. What about ostomy visitors? What about support groups? Peer support can make such a difference. When you're facing anything that's difficult, you look around for somebody who's already done this. I don't care whether it's filling out your college application, getting ready for an SAT test, dealing with your first pregnancy, taking care of your first baby. Getting ready for a marathon. Whatever you're doing for the first time. One of the things that helps is talking to somebody who's already done it. Somebody who's walked that path and is walking it now and can give you tips. Same thing in adjusting to an ostomy. So peer support, critical factor. An ostomy visitor can be so helpful, whether that ostomy visitor's online or face-to-face. I've had so many patients tell me, you know, when he walked in the door and he looked just like everybody else, I couldn't see anything, I couldn't smell anything. And he's like, "Hi, I'm Jack. I have an ileostomy like you. And I'm here to answer any questions I can, provide any help I can." They're like, "Just seeing him made such a difference." So if you can find an ostomy visitor, similar age, same gender, huge difference. Now, if you have a teenage patient and all of your ostomy visitors are in their 70s or 80s, no. It won't be beneficial because if you sent me in there to talk to that teenager, they'd look at me and say, "Well, yeah, she's doing okay, but her life's over with anyway." So what does that have to do with me? They have to kind of look like us and feel like us for it to really make a difference. Always we should be providing information about the United Ostomy Association of America or the International Ostomy Association so that they know they can go online. They can access online support groups, online chat rooms, online discussion boards where they can post a question and get a response. And that's what we do. UOAA has a wonderful introductory publication that you might just want to stock in your office and give to every patient, which just lets them know, "Wow, it's not just me. There's a whole group of people out there and they can probably help." So now let's talk about assessment and the adaptation process. So there are actually three distinct levels of adaptation. And the first one is the assessment process. So the assessment process is the basic mastery and responsibility for self-care. And we really want to see our patients making really good progress toward this by the time of discharge. So when I come into the room, I'm going to be asking that patient, "Who's emptying your pouch? Are the nurses emptying your pouch? Are you emptying your pouch? Are you helping?" Because that's the first self-care skill we teach. We're looking for evidence of neglect. We're looking for evidence their pouch is way overfilled then they weren't monitoring for level of fullness and they weren't intervening so now I need to sit down and say okay I'm really concerned because I look at how full your pouch is and I see that we've got to empty it immediately or you're going to have a major leakage episode and I want to make sure that does not happen to you if we can prevent it were you aware of how full your pouch was let's talk about what you need to do so that would be neglect sometimes you will see neglectful care because I'm not ready to deal with it so I'm not monitoring I'm not intervening and you want to discuss that directly with me this is what I see this is what my concern is tell me what's going on from your side of the fence from your side of the sheets obsessive care that's relatively common early post-op because this is a new phenomenon I'm trying to figure out how to manage it so it's not uncommon to see a patient who's emptying more often than is necessary who's saying well I'd feel more comfortable changing it every day at just seems dirty so we want to address those issues we also want to realize that it's not uncommon for people to be over-the-top and their response to the ostomy during the first few days and weeks until they know more what to expect and then a lot of that obsessive behavior tends to taper off sometimes you'll find that the significant other is doing all of the care and you want to ask why if you go in and you say are you emptying your pouch and the patient's like no my wife is doing that you will say now why is she emptying the pouch why are you not emptying the pouch and let me tell you why I'm asking that I I want you to be able to empty your pouch just like you went to the bathroom independently before I want you to be able to recognize when your pouch is full when you need to empty how to open the spout how to drain it how to clean it how to close it and here's why because they're gonna be times when your wife might not be available maybe she's shopping maybe she's tied up with something in the home and your pouch needs to be empty and also because what we know from research studies is that people who can do their own care people who are independent in these basics they do better they feel better about themselves they feel better about their lives and they're faster to get back into usual activities so I'm gonna kind of push you a little bit I want to know that you can do this if you need to the second level of adaptation is resumption of their usual lifestyle to the extent possible now we know they're recovering from surgery and it's going to take six to eight weeks before we were ready for them to go back to work we're not ready for them to go back to the gym for the first few weeks but we want to see them moving back into their usual activities as soon as possible so you want to ask them when they come back to your clinic so tell me where you're to and getting back into your usual activities what are the things you like to do do you like to go out to eat do you like to shop do you like to go to the movie what do you like to do are you a walker tell me your usual activities and where are you to and getting back into those activities and they might say well usually I'm a big shopper but you know I'm so nervous about this I just haven't been ready to go back to the mall I actually pushed myself one day to go for a little while but the whole time I was kind of checking my pouch to see was it full was it intact did I need to go to the bathroom so I'm not sure it did me any good to go because the whole time I was checking on my pouch and what you want to say to them is you know what that's perfectly normal for where you're to so good for you for making yourself get up and go totally normal to be obsessively checking your pouch this is still an unknown entity for you every time you go your comfort level will increase a little bit so keep doing it keep pushing yourself to go places that don't feel comfortable that's the only way it's ever going to feel right so somebody invites you to meet them for coffee and you're like oh I don't know say yes push yourself and finally talk to them about worst case so why do you think you're so nervous I'm just what if my bag leaks okay let's talk about that what if it did leak what would you do you want to talk about the importance of having an emergency kit you want to walk them through what they would do if I'm prepared for worst case scenario I can pretty much handle everything else the highest level of adaptation is you know what I'm okay I'm okay with me I didn't want to have this surgery I would never have picked this if I could go back and be okay and not need it I would in a heartbeat but this ostomy doesn't define me I can manage it it's not going to manage me I'm still the same person I was before and I'm gonna be okay I know some days I have down days I'm sure that'll continue for a while but overall I'm feeling pretty good so we want to be aware anxiety depression irritability are common during the early phases the first few weeks and months we want to be aware that full adaptation can take up to two years and again the things that we do to help we create a manageable pouching situation we're there to help solve problems and we push we push you back into your life because that is what's going to result in full adaptation now we're going to briefly talk about the adaptation process we've kind of referred to elements it's essentially the same as the grief process because the person has to grieve loss of their normal body normal function the way it was before before they can come to terms with the new normal and there's these distinct phases but people move back and forth between these phases and not everybody goes through them in sequence so we know that most people start out with shock panic kind of a disbelief when they're first informed that they're going to need an ostomy many people move into a form of denial almost everybody goes through a period where they're angry and they're depressed and they're frustrated and they're irritable because they're having to deal with something they don't want to deal with and then they get to adaptation that's our goal so let's talk about each of those phases briefly shock panic disbelief that is human response to news that represents a threat to our sense of security and well-being your pathology report came back I'm so sorry to have to tell you it's cancer and that cancer is extensive enough that we're going to have to remove your rectum we're going to have to remove your bladder as a result we're going to have to make an opening on your abdomen and you're going to need to wear a bag oh my god so many threats wrapped up in that one message you can see people who are just hysterical they can't stop crying or you can see people who are just numb they act like robots they just sit there they nod their head they ask mechanical questions when is surgery scheduled what are my next steps that they leave but they're not truly processing because this is an assault this is a threat all we can do for patients at this point is provide supportive care we can't teach them we can't counsel them we just have to be there for them the second phase for many people is denial denial allows me it provides protection it provides pain relief. I sometimes consider denial to be morphing for the soul. So it's like I am not ready to deal with that, so I'm going to pretend that it's not there. Now, we all use denial sometimes, and it can be a very healthy coping mechanism for a period of time. So you've heard people say, you know, I can't even deal with that right now. Right now, I've got to deal with this and this. I'll deal with that down the road. Here, you might be talking to a patient preoperatively. The surgeon might have told this patient, there's a possibility that you will need an ostomy. We might have to create a temporary detour. You might have to wear a bag for three to six months. And what you're hearing from the patient pre-op is, well, she said, I probably won't. I don't need that. She said it was a possibility, but not a probability. Okay, that's a normal response. We're hanging on to the positives. We're minimizing the potential negatives. Post-operatively, you might see people who don't deal with the stoma. If you say, I'm going to take off your pouch, I want to show you a few things, they might say, I'm not ready to look. I'm not ready to talk about it. Or they may acknowledge the stoma, but from a very clinical perspective, they may deny that they have any kind of emotional response. And occasionally, you'll see a patient who has a permanent ostomy, but they keep talking like it's temporary. Well, as soon as I get this closed, I know I'm not going anywhere right now. I'm not going out with my friends. I'm not going to my church meetings. But as soon as they close this up, I'll get back into my life. That is a form of denial because reversal is not planned. So what can you do when someone's in denial? Well, remember why they're there. That's their way of coping with the pain. So you can't just take it away. So pre-operatively, I'm not going to say, look, you need to come to terms with the fact you might need an ostomy. I'm not going to say that at all. I'm going to say, you're absolutely correct. That's my understanding from your surgeon as well, that the goal is to take out the section of the bowel with the cancer, reconnect the two good ends. No stoma, no bag required. But here's what I want to be sure that we're clear on. In a small percentage of cases, they do need to do a temporary ostomy to allow the reconnected area to heal. Or in a small percentage of cases, they're not able to do the reconnection. And people do end up with an ostomy and a bag. We just need to know if that was the case in your situation, would you want this done? So I've walked into a number of rooms where I've introduced myself to a lot of people. And I've asked them, I've asked them, I've asked them, I've asked them, I've asked them, I've asked them, I've asked them, I've asked them, I've asked them, I've asked them, and the first thing the patient said to me is, I don't want that. I'm not going to have that done. And I never challenged them on that. I don't say, well, wait till you hear what I have to say. I just say, I understand. And that is absolutely your choice. Your surgeon asked me to come and talk to you to make sure you understand what your options are and what decisions need to be made. And to answer any questions you have. So you make the best decision for you. And most of the time, once we talk through some of these things and get to the other end and ask them, and I ask them, if an ostomy was needed, at least on a temporary basis, to give you the best outcomes, would you want that done? Most of the time the answer is yes, but I don't think it's going to be necessary. Okay. I can have a foot in both camps. I don't think it's going to be necessary, but if it is, yes, do it. Post-op, again, I'm going to avoid a direct challenge. I'm not going to say, look, you've got to sit up. You've got to start taking responsibility. I'm going to say to them, let's talk about how you're going to manage when you go home. That's really my concern, how you're going to manage when you go home. Are you going to be there by yourself? Are you going to have someone to help you? Who's going to be responsible for what? I want to make sure you don't get home and have major surprises, have major complications. So I'm coming at it from a different perspective. The third component of adaptation is acknowledgement. Now, like, okay, I did have this done. I hate it. I hate it that this happened to me. And I'm alternating between being angry and irritable and being so, so sad. I can't believe this. It's not fair. I'm the only one in my family who pays attention to what I eat. I'm the only one that exercises. I'm the only one who's not overweight or morbidly obese. I'm the only one who goes to the doctor on a routine basis. And who gets cancer? So I'm dealing with all kinds of feelings. Anger, frustration, irritability. It shouldn't have happened to me. I'm so sad. So we're going to see all of those behaviors. Occasionally you'll see people who are very withdrawn. You walk in. The lights are out. They've got the sheets up to their nose. They keep their eyes closed when you're talking to them. They're depressed. They're withdrawn. They're withdrawing. Occasionally you'll see people kind of acting out. That's not common, but it does occur. Like I've had a patient. I had a patient once. He wore his pouch on the outside of his clothing, which kind of forced everyone to acknowledge the ostomy. It was kind of in-your-face behavior. Not appropriate at all. In that case, I was trying to figure out how I was going to deal with that. But it turned out that, a fellow patient, he was at the VA, a fellow patient who had an ostomy said to him, "Man, put that shit back in your pants. Don't nobody want to look at it." And he did it. And I thought, "Well, okay." He handled that very quickly, very effectively. So I guess I can put all of my therapeutic interventions back in my little carrying case and be grateful to that patient. What are the things that are helpful when you're at this phase, where you're just mad and sad? One of the most important things is just to listen. Just to sit down and say, "Wow, you look so sad today. You must have all kinds of things going through your head." Or, "You sound so angry that all this happened to you. And I don't blame you. I would be angry, too. Tell me what's going on." And then acknowledge their feelings. That is so important, just to say to me, "You have a right to be sad. You have a right to be mad. You have all this stuff going on. It's not fair. Life isn't fair, but it's really hard when the unfair components of life end up on our plate." What you don't want to do is put band-aids on. You don't want to put band-aids on how they feel. You don't want to tell me that a lot of famous people have an ostomy. I don't care. You don't want to necessarily tell me right now that I'm going to feel so much better in just a few months. Maybe I'm not ready to hear that. You want to acknowledge that I'm going through a lot, that this is a really difficult time, that it is normal to feel really sad and really angry, and that it's helpful to get those feelings out. To be open and honest about what's going on inside your head and inside your heart. And then when it seems appropriate, you can say to me, "I just want you to know that things will get better. I'm going to do everything I can to make this as manageable as possible. I wish I could take it away. I can't, but I'm going to do everything I can to help make it manageable." And what we hear from people who have been down this path is that it does gradually get better. I know that doesn't help you right now, but I just wanted to share that with you. I don't want you to feel like it's always going to be this way. Adaptation, the acute grief begins to subside. Now I start to look ahead. I start to focus on, "If I have to live with this, how do I do it? How do I empty it without making a mess?" The nurses always make a mess. got to be a better way. I've got to learn how to change it. Okay, come show me how to change it. I know I've got to learn it. I don't want to learn it, but I know I have to. So get over here and start teaching me. Where am I going to get these supplies? Can I just walk into a CVS and get them? No. Then where do I get them? Am I going to be able to eat normally? How do I manage this? Many, many questions. This is a much easier phase for us. It's so hard when patients are sad and mad because we want to make them feel better, but we can't. It's much easier when they have questions and we have answers. So in summarizing rehabilitative care for ostomy patients, we look at three levels of adaptation. Level number one, we need to help patients. We need to help patients. We need to help them learn self-care. We need to push them to assume responsibility for their self-care because that enables them to move to level two, which is resumption of usual activities. And as they reintegrate into their lives, they make progress toward level three, which is I'm okay. The adaptation process, most people start out in that shock, disbelief phase, and all we can do is provide supportive care. Most people go through a period of denial where it's like, I'm not dealing with that. I'm not, nope. I don't think I'm going to need this. I don't think my surgery is going to involve an ostomy. I think they're going to be able to take out the cancer, put me back together. Or I'm post-op and I'm just not ready to look at the stoma. I'm not ready to participate in teaching. I'm not ready to look at the stoma. I don't want to see how to empty. I don't want to see how to change. What we want to do is focus on the critical elements. Pre-op, we all are on the same page. We hope you don't need this. Our question is this. If you needed an ostomy on at least a temporary basis to get the best outcomes long term, would you want that done? I wish I could make this go away. I can't. I want to help you plan ahead for when you go home. I want us to come up with a management plan that will work. Tell me who's going to be there with you. Tell me who's going to be responsible for what. Then they're going to go into the acknowledgement phase. This is where they're angry and sad, but coming to terms with the reality. And then finally, they're going to go into the acknowledgement phase. They're ready to ask questions, learn self-care, figure out how to manage this ostomy. We know that everybody's experience is different. We know there are many things that impact on adaptation. We've reviewed a lot of those, their baseline personality, what they think is going to happen. The assistance and support available, their developmental stage. Their ability to adapt to the new environment. And then finally, the ability to adapt to the new environment.
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