Dana-Farber’s Young-Onset Colorectal Cancer Center's Gut Instincts series continued on Tuesday, June 22 with an educational workshop on Best Practices for Ostomy Care. This webinar is for healthcare professionals, patients, and supporters.
I am committing the director of the young onset Colorectal cancer center and I am really excited to moderate this session of our gut instinct series on young onset colorectal cancer. We have an amazing lineup of experts here to talk to us about pasta meals today which is something that clearly affects so many of our young patients and for which I know many people don't know much about including health professionals as well as patients themselves. So we really hope to educate everybody on all aspects of our systems from multiple different perspectives today. So we will have four panelists. They will each talk for about 10 minutes and then we should have ample time for questions at the end. Many of you have submitted questions already uh as you registered but if you have other questions that come to mind as the panel is ongoing, please feel free to type them in the Q and A. And we will be sure to address as many as we can um later on. Alright so let's get started and bring up the slides. Just one quick announcement that you can earn nursing credits for participating in this program. Um you have to watch it in its entirety and also complete an evaluation form that we will send to all participants and registrants after the session ends and just to let you know that all speakers and planners have no conflicts of interest to disclose. Thank you again so much for joining and with that I am going to pass it on to our first Panelist dr Goldberg to introduce himself and give us an overview of pasta mies. So thank you very much for coming to our panel today. I'm one of the colorectal surgeons here at the Brigham. I've been here for 17 years and I've been in practice for 21 years. I practiced for 4.5 years in the United States Air Force. When I was first out of residency, I did my um residency here at the Beth Israel deaconess and at the Brigham and women's um I did it in general surgery and I did a surgical oncology fellowship. And then after my time in the Air Force I did a fellowship in colorectal surgery at the University of Minnesota and then came back and joined the faculty today, what I'm gonna do is talk really briefly about the different types of pasta mies and a little bit about the operations that result in each of those Assamese. And basically my slides are just all pictures of the different systems so that everybody will have an idea of what they look like and also how um how appliances fit on next time. So this is a loop Elias to me and as you can see there are two openings um here that I'm pointing to, there's the uh Upper one and a lower one and there superior and inferior and as you can see to the right of the slide, there is the umbilicus and the upstream end or the portion of the osce to me. That's to the top of the picture that is where the bowel contents will come out and the lower half is the de functional ized limb of the small intestine. And as you can see the Ostuni sticks up so that when the appliance fits on it that the bowel contents don't come in contact with the skin that they empty directly into the bag. This type of Ostuni is used when it's generally when it's temporary and it's usually after rectal cancer surgery and this allows us after the person has healed and finished their therapy for us to make a little incision around this hook the two ends together and put it back in. So it makes the second operation smaller. The rationale for this is patients with rectal cancer and had chemotherapy. They've had radiation. They don't heal as well. So allowing the two ends of intestine that we hooked together to heal together with no intestinal contents going by um promotes healing. Um makes it easier to heal and if the person has a leak then there's less contamination when there's leakage and more likely for it to heal. Next live. So this is as you can see you can see the umbilicus is to the left of the screen and it's superior and this is what we call an end colostomy. So this is the very end of the colon and you can see this is a single barrel and it's much bigger. This Ostuni is typically the type that is permanent When we're talking about patients with cancer. And that's because we've taken out the entire rectum and the anus and we've sewed the backside closed as you can see once again. This also sticks up so that when the bag and the appliance are stuck to the skin and are placed on that the bowel contents will empty into the bag. Next slide, this you can see is an end Elias to me, this is a picture of a young woman who had all sort of collided with colon cancer. And so we took out her entire colon but left the rectum in place and she has a single barrel Elias to me because once she's done with her treatment with her chemotherapy will be able to go back, take out the rectum because she has inflammatory condition called colitis. And then we'll be able to use that. And Elias to me, the intestine that's there to make a new rectum out of the small intestine and hook it up to the anal canal. Next slide. So as you can see, here's another picture of the patient with the double barrel Elias. To me, this is the appliance. So you can see there's like a gel like material. Um and it has a white ring around it with a hole cut in the middle, the hole cut in the middle goes around the two pieces of intestine and the white ring that is there a bag snaps onto that like a piece of tupperware Next slide. So as you can see this is the back side where it's very sticky and we're peeling off the the sticky part so that we can the paper that protects the sticky part so that we can apply the appliance to the patient. Next slide. So then as you can see the the appliance goes around the Ostuni, it sticks to the skin. And the appliances that people wear when they're not in in the operating room are flatter and they're more made out of cloth and they're sticky on the back side, a disposable cloth almost. Whereas this gel is something that we use in the O. R. Next slide. So here's the bag and as you can see at the very very bottom there is a clip um uh that is rolled up and clipped and you can see the white um rim. Is the piece that snaps onto the appliance. Next slide, you can see here we're just you can just like a tupperware lid or snapping the bag on around the Ostuni. Next slide and here's a picture of an end Elias to me that's in the bag. And as you can see the osce to me sticks up so that the affluent the G. I. Contents empty right into the bag. They don't empty onto the skin. And as you can see where the fingers of the patients or the Ostuni nurse are. That's a little um charcoal air filter that allows air and gas so the bag doesn't blow up next slide. And here's a picture of the same, same patient, different bag. And as you can see there is the G. I. Contents going into the bag. Next slide. And here's a patient that sent us um when we went to reverse the rasta me, like many patients where we can reverse them. Um This is what the patient um surprised that they left for us. Unfortunately not everybody can get their Ost Amis reversed. And so what I always tell the residents the patients and everybody else the most important part of the surgery is the osce to me because that's what the patient has too often live with, whether it's for three months, six months or forever, the patient has to live with it. And so you really want a good odds. To me, it's a little strange for patients at first when the Ostuni is sticking up um Some patients say, oh it sticks up too much. I wanted to be flush with the skin but they don't understand that if it's flush with the skin, it leaks, they really have to stick up um uh you know at least two centimeters and um Usually three cm is better. Next slide. That's it. Diane, thank you Dr Goldberg, very welcome. You know my name is Diane Bryant and one of seven wound Osman continents nurses here at the Brigham Women's Hospital. I have the pleasure of working with Dr Goldberg and managing many patients with permanent or temporary Elias Tommy's. So I want to give you some background information. We value surgeons like Dr Goldberg who make good stone us and believe me, we let him know when he doesn't make a good stomach because that as he alluded to affects quality of life. So individuals who have to undergo the surgery come from all walks of life. Next slide please. And it begins with a journey and this journey has many twists and turns ups and downs. Um so we always say to our patients, patience is a virtue during this discourse in their life next slide. So when after um individuals meet with their surgeons and their oncologists and they're told that they will have either permanent or temporary. Um Elias to me or colostomy. They have many feelings and they have many misconceptions because sometimes they go onto the internet and while there are very good sites, there are some sites that lead the patient to a lot of misconceptions. The # one concern that we've always had is individuals are concerned that they're going to smell. And so we we reinforce it is dr Goldberg mentioned the punching system, it's odor proof and if you have a good seal around your stoma, you should never ever smell. And I tell patients who much into the bathroom, check everything out. They're concerned that they need to wear a size bigger that they have to wear loose fitting clothing. Um, clothing is an expression of how we see ourselves. So that does not need to change with the Elias Tamia colostomy. If they can wear anything they want. They're worried about going back to school, exercising, going to the gym, doing all the things that we value in our lives. As we've talked about, People come from all um age groups and they're worried about intimacy. They're worried about sex. Um we spend time talking to them about this and it's really in collaboration with the colorectal surgeon because is there an impact of surgery on their sexual functioning. Um Well, they have to change the pouch every day. Dr Goldberg mentioned we instruct our patients depending if it's an Elias a me or colostomy. Um it changes the frequency of emptying the pouch. They're worried about eating normal food. And we have a great um dietitian here with us today who will talk, talk to us about that. But we tell people, please go back to what you're used to eating unless you were eating a lot of junk food before. And then also is that everyone will know that I have it back. People don't need to know this unless you choose to tell them they're worried about going swimming or showering again with clothing. Um and of course traveling, I have one patient who has made um it around the world. And I've seen more than 50 countries. We have patients who do scuba diving. Um as I've mentioned all walks of life. Next slide please. So we talk about this and these are examples of the different poaching systems as we know with an Elias. To me, it's at the end of the small intestine and that will necessitate you emptying the poach anywhere from 6 to 8 times a day is normal while depending on the location of a colostomy, it can be um as little as 12 twice a day and that can lead you to using a closed end punching system or more frequently depending on the location of the G. I. Tract dr. Goldberg gave us some good examples of what s toma should look like. Um And so there shouldn't be a lot of accessories or many steps in punching this toma next side. So I've been around this um profession for a very long time. And in this beginning of my career, people were very hesitant to talk about having the stomach. I recall one patient that I had, who her Children didn't even know she had a storm a so it was something that was kept secret and private. I love the idea that people are able to express themselves on social media and come to terms with the change in their body image. People learned how to pouch their stomach, They've done other things that are much harder. But the emotional adjustment is probably the biggest factor. And our patients are individuals out there in the community who are living their lives and can be able to express themselves on social media. I really applaud them. I think it's wonderful how we've advanced in this area next like we're gonna, as I mentioned, our dietician is going to talk more about food but I'm here to talk about activity. I tell people to go and enjoy because many times they didn't feel well through the chemotherapy or their radiation and they're just recovering from the surgery. So start out, start out either walking um going to the beach, doing what you enjoy. Also returning to work for many people is very important. Um It gives them themselves a sense of purpose depending who that individual is um and relationships no matter what your age being in a relationship and having to go through this surgery can be challenging. Um depending on the partner involved and to be open in your disclosure of what is happening to you young people. We spend a lot of time talking about this about dating. Um And here at the Brigham we have a visitor program where we have several individuals who have gone through Austin the surgery who we like to connect with individuals who are starting out on this journey as I say because I I know certain things but there is nothing like an individual meeting someone else who has gone through that journey and has had that Elias to be. Um it's extremely important and and a valuable member of our team. Um I will never forget how people really enjoy seeing someone walk in their room who's nicely dressed, a pair of jeans, a pair of shorts, whatever. And they're like, you have an Oscar to me, I can't see it. So that really validates that we talked a lot about relationships connecting all sorts of things and so people all different in that respect. Excellent. There's a couple of organizations out there for you. Um, you owe a and they're uh they're they're they're a consumer based volunteer organization that an advocacy that um promotes education um lobbies for individuals who have temporary and permanent Elias Tommy's and I refer you to this website looks like they also have chat boards, discussion boards and where you can answer all these questions. Um, there's also organizations that I belong to that primarily made up of nurses, but here you can find out the individual can find out information about living with an osce. To me. There's certain referrals if you are in a community outside the boston area and you're looking for an Oscar me nurse. This is a website that will help you. Um, and we really partnership with individuals who have stoners. So I hope I've given you a kind of an overview of what my role in the team here is I work. I value my membership in this team as far as helping um in the correct poaching um system for that? Either Elias to me or colostomy and addressing any skin breakdown issues in prevention of that. So thank you very much and it's a team effort all of us on this panel. Know it, so thank you. So my name is julie bosworth and um I'm actually a member of the team, the nutrition team at the South Shore Satellite in clinical affiliation with South Shore Hospital. And we have both a medical oncology floor, radiation floor as well as surgical oncology. And I've worked closely over the years with Dr Clancy and DR Corwin um with regards to colostomy and Elias to me. Um I trained, I received my degree at Cornell and then I did my internship at the Brigham and actually started off on the surgical floor. So my experiences with Um asked me care started right at the beginning of my career and I kind of had a little hiatus and went through transplant, solid organ transplant. And now I've looped back and I'm doing it again at Dana Farber and I've been here about 10 years next size please. So what I want to point out is that while there are differences between the colostomy eating and the Elias to me eating. They there are some really good solid recommendations that are going to be for both. So um one of the things that I can't emphasize enough is that starting with a realistic sized piece of food. I say to people about the size of a dime because everyone kind of has a good frame of reference about that. And if you've got good teeth use them chewing majorly increases the surface area and allows the digestive enzymes to affect the food as well as eating slowly and sitting upright. So positional e eating in a relaxed environment, chewing thoroughly and kind of having that visual when I talk with the patient. Initially I say think about what the food has to go through between your mouth and when you're gonna see it coming out. It's got a lot, it's a long process in kind of a short period of time so help it as much as you can. You want to eat six equally portioned meals per day. So this you know colostomy is gonna be less touchy food wise. So you can get away with about six equally portioned meals per day. You will like Diane said get back to eating your normal foods and you won't need to eat for six times a day as time passes the farther out that you get. But initially I can't emphasize enough, sending small amounts through both in terms of size. Well chewed food and frequency. It's a lot easier for the body to deal with those size portions than if you were to sit down and have the texas sized cut of food or whatever you're having. Um I cannot emphasize enough the adequacy of fluid. We were talking a little bit about it before we got on the call. Um 8 to 10 8 ounce glasses of fluid daily. Everyone is told 64 ounces. But if your weight is above, if you're bigger than a small five ft 2 to five ft three female and your weight is appropriate for height, meaning less than 100 and 20% of what metropolitan life says that you're supposed to weigh your weight in kilograms. Your weight in pounds divided by 2.2 is the number of ounces of fluid you should aim for a day and notice I'm not saying water. I often get a comment. I'm not a water drinker. You don't need to be. We can as long as it's fluid and liquid and will imbibe into the different types of fiber, it can be fluid. I love some fluid that has some sodium in it. So broths milk if you tolerate milk, Gatorade Powerade pedialyte. Those are all fluids that where where the sodium acts like a sponge and pulls the fluid into the body so your best hydrated that way, Adjustment to the new anatomy for colostomy from an eating standpoint I usually find is about 2-3 weeks or slightly longer before you can start introducing some of the foods on the less tolerated lists. I also want you to know at the end when Mary Brown sends the guidelines out or you know, kind of the summary, there are going to be three guidelines. One for colostomy, one for Elias to me and a general one for fluid that are written by the Brigham and they're given to patients. So if you haven't had a one on one, consult with a dietician, you'll be getting those pieces of literature. So we say low fiber, low residue died for 2-3 weeks. Low fiber meaning no seeds, nuts or grains, no bread products that look like they have the dusty sawdust on them. In other words, kind of counterintuitive to the way we're told to eat, we want white everything and that's really hard for people. They say I want to get on with my survivorship type diet right away. It's kind of hard to do because we want the body to react slowly to this new anatomy. So the and low residue can be mean avoiding things like cheese, heavy meats as well as milk products. Next slide please. So all the colostomy guidelines hold true within Elias to me. So right off the bed, I say all of them and that and and expected to adjustment time of 6-8 weeks Due to the increased fluid losses, especially in the 1st 6-8 weeks. There is a much more acute need for adequate fluid right on the Elias to me hand out, it's gonna say 10 10 servings of fluid daily. If you're a big guy though you could have upwards of 90 ounces of fluid needed to keep you adequately hydrated. So if there's any question, this is where you'd want to seek out a dietician. There should be no reason to bounce in for I. V. Fluids. It happens to a lot of people but it should happen only once because at that point you should know I've got to get myself hydrated and stay hydrated. So if you bounce and fried rate I. V. Fluid, you want to springboard off of that hydration and maintain it. So you need to have an awareness for the science and symptoms of dehydration. And they're going to be written in the city handout that you're going to receive. Um and you're also going to know that your diet tolerances are going to be more individualized. So it's really good to hear what people tolerate or what their trajectory of adjustment has been. But the biggest picture is remember that you're an individual, The placement is going to be slightly different and also diet tolerances were different prior to coming into the surgery and they may remain so you want to introduce food slowly with an awareness of how each is tolerated. So for those of you who are parents and have introduced foods to a baby, you want to proceed in about the same way. And I did have a patient today that we had talked about changes last week and we had talked about them in a stepwise fashion. And I had said to her, are you writing this down? Because I was doing a video call and one of the I could kind of tell that she was not writing it down and she ended up implementing a lot of them all at the same time. We need to actually repeat this process because we don't know which of those things that she took those steps that she took worked for her. So we had to back off on some of the fibers that we're using. So the low fiber, low residue diet because of the touchiness of the Elias to me comparatively can be expected for 6 to 8 weeks next flight please. So what are common to both is the top importance is the adequacy of the fluid intake using low fiber and low residue. And we mean both types of fiber. When we say fiber, we generally assume as dieticians, most of it's going to be two thirds of people's normal intake is going to be insoluble fibers like whole grain foods and many of the fruits and vegetables, Things like salad. Um there is also a soluble fiber that can be a really big friend. And that comes in the form of both foods. So it can be foods like peanut butter, melon, oatmeal, oatmeal can be a great binder for a lot of that extra fluid for for both colostomy as well as Elias Tommy's but when we talk about fiber, we're talking about the general, the general overall when we talk about increasing fiber to help with fluid, we're talking about soluble and you'll see the differences in guidelines between both. A pasty stool at the top of the Ostuni bag that doesn't nicely move down like that. One picture showed if it's all collecting and it's tacky at the top of the bag, you should view that as constipation and troubleshoot constipation from a fluid as well as type of food. Um diet liquid stool with no form at all over time or that where the bag feels very quickly and requires a lot more changing than diane mentioned is could be considered diarrhea. So that's where I urge you to take small bites too and have at least six meals a day, be adequately hydrated and then then ask yourself, how am I doing with constipation or diarrhea. Um One of the other things I want to point out is when you work with a dietician with this, this is not something that I find easy to do in one visit because there's a lot of trouble shooting that goes on and everyone is individualized. So I usually tell people to expect a 45 minute discussion about this, where we get a full recall and their experience and what is their life like now, are that what's their quality of life. One of a lot of those guidelines were when Diane was discussing lifestyle and people's concerns are trouble could be trouble, trouble shot through use of food. Food can be a big friend to you through this. Both food and fluid is can turn your intolerances into tolerances and actually make you feel like you have no change in your lifestyle since getting getting your Ostuni. So my big thing is Know what your own tolerances are and say, why wouldn't I have that food after that 6-8 week period of time? In other words, don't over restrict and find ways to include them, even if they're in small quantities when you're in the safety of your own home or at someone's house that you'd feel comfortable saying excusing yourself and going to the bathroom. I want to, I want to emphasize how to normalize this process instead of saying, okay, I'm on a rigid diet permanently. That doesn't really work for me. Next slide please. Is that it? Okay. So troubleshooting, like I mentioned, starts with dehydration. Um, gas, there are times where people have gassy foods and we have excellent guidelines written for that where the air actually fills the bag and then that's a problem because the bag is blowing up and then people say, okay, now what do I do with this? Some bags are vented, some aren't oder, we have odor reducers. Um, that can be very helpful and we can help you identify foods that may be your body. I mean, people process the same food very differently. So that is another one of those things that I want to emphasize. The importance of knowing your own tolerances and think about what you tolerated before And what you tolerate. Now. And almost start writing a diary in the list. We have some excellent food records in the nutrition department where we do um like a food frequency guideline with the G. I. symptom that results. So keeping a log during that 6-8 weeks can be extremely helpful. And then I mentioned that constipation, dehydration um troubleshooting a lot of what I do is when we've added fiber in and then people don't follow suit with adequate fluid. We have we often have a much bigger concern with constipation because the food just doesn't move through and therefore the stool never really moves into the bag at the pace, we would want it to so hydrate, hydrate, hydrate. So and in addition to the foods that we mentioned and the foods that you see written on the guideline sheet, there are all sorts of sources of um oral fiber supplements. So Metamucil. Um Bana fiber is probably the thing I use most in my practice both at the fiber and I have a private practice where I deal with bowel issues as well. Um And always think about the realistic nous. If something says use a tablespoon of fiber. We've got a long gi tract to deal with. And we want to really make sure that that fiber is inserted throughout the day of eating. So I always suggest if you're going to do fiber, start slowly like you would have food using small quantities and when someone something says one tablespoon three teaspoons spread eight hours apart is the equivalent and will be much better tolerated. Um And I also want to point out that this should not feel like a trial and error. Okay a strange food that you don't have a long history of eating might be something like that. But in general we have guidelines where foods fall into them that can help you with these different consistencies and hopefully you'll find those handouts that are going to be sent to you to be very helpful in helping you to troubleshoot the new process. Thank you. Um Lastly the survivorship portion, like when we were talking about this as part of looking towards the future. Um When we hear about survivorship and a lot of people want their survivorship discussion. We know that we're really talking about the plant based diet, we know that if we talked about the plant based diet, we're really looking for um phyto nutrients in the form of plants. Um Foods not supplements that we take by mouth but the in the form of 5 to 10 servings have cup servings of fruits and vegetables per day and whether we eat them and chew them or put them in the smoothie, the spit goal is still the same. So all of a sudden we say for 6-8 weeks or 2-3 weeks you really need to pull back on that so that diet might feel highly contradictory to you and you might be literally chomping at the bit to get on with that survivorship feeling keep in mind, you're gonna get there, You're going to start with the addition of soluble fibers because there are much more friendly fiber. Think of a pectin based fiber or think about how oatmeal and vibes the water around it. That's an example of a soluble, then you're gonna grab gradually add in the insoluble after 6-8 weeks. And then I'm going to go back to that statement and finally, and always ask yourself why wouldn't I eat that so that you can include especially as many of those fruits and vegetables to keep you healthy as possible. I think I am last um my name is Alison Rosen and I am a stage two colorectal cancer survivor, very passionate advocate and I'm a permanent Ili austin eight. Um I'm really excited to follow up. Um I was listening very intently to all three experts talking and there's there's many, many points that um that I want to reiterate, but but I think I'll start and and just in a few minutes, give you a little bit about my story and how I ended up with a permanent Ostuni, I mean obviously I said I'm a colorectal cancer survivor, but um when I first was diagnosed, my surgeon gave me multiple different options and I was very adamant after doing a little bit, a little bit of research that I did not want an austin. E I was like, I want to do whatever I can to not have an osce to me and to still live a full full life. And and so I woke up from my first surgery and I had a temporary Elias to me, temporary luke Elias to me. And um a J pouch was formed. Um I had the reversal surgery um and living with that J pouch is very, very difficult for me and and so ultimately, so lots of stuff happened over over the course of that next year. I had infections, all sorts of different things. I'm sort of an anomaly. If something would go wrong, it will go wrong with me. Um So I ended up having to have another sort of temporary um Elias to be made. And then after a year and a half of trying to figure out if it could maybe re reversed. Um it was made permanent and and I want to say now looking back it was the best decision I ever made. I think if I had been educated and maybe had talked to another estimate like was suggested earlier or had talked to more people. Um even you know a nutritionist, you know, who knows me nurse ahead of time. I probably would have made a different decision only because um, three surgeries, three open surgeries have have left my body, um, not in the best shape ever, but I have to say if I had not had um the pasta me or if I had an Oscar me didn't exist, I wouldn't be alive right now. So I'm forever grateful. And that's sort of what brought me into advocacy, not only about colorectal cancer, but just in general. Um, the picture you see on this screen is the first time I ever showed my Oscar me off to anybody, I I will go and talk to people about it because I do one on one mentoring, I will talk to people on the phone, I'll walk in like was said in a tight dress that I wear for work sometimes, but I had never really shown it off to, I guess to the world. Um, it wasn't necessarily that I was in denial by any means. It's just, I'm, you know, a relatively conservative person and you can tell I have it. So unless someone sort of asked or knows me. Um, now everyone knows I haven't asked me, but back then, um, when I first had the permanent surgery, they didn't necessarily know. So I turned to social media for, I guess support for connection and just just to understand some of the questions that were answered today, I was under the impression I probably couldn't ever go swimming again. And that is totally not true. I can totally go swimming. I'm a very active person. I do Zumba four or five times a week. I lift weights, I do all sorts of things and I thought I could never do that again. I also love salad and vegetables and a very green and colorful diet. I thought I couldn't eat those foods that I love. And I think all of that if I had maybe educated myself or I had asked some of the right questions or um my care team had maybe spent a little bit more time at the beginning when it was, we were trying to decide what to do for me, I would have made a different decision and I think an open honest conversation with the patient, maybe not when they're first diagnosed with cancer. If it is cancer related because you're going through so many emotions that really, I think what surgery I had, I just wanted, I wanted to live. Um, that was my main goal to live. I really had no idea what my survival rate was or what not. So I think my advocacy focuses on, you know, learning about all your options. And obviously I'm young. I'm, I'm not not say there isn't a typical colorectal cancer patient and for me, I thought I was going to be the only young person I'd see um in the waiting room or, or throughout my journey and I have become so, so, so passionate that I've met so many young young people that have colorectal cancer. And so I think that what was said earlier, you know, there is a lot about the physical health, finding the right appliance, you know, wearing the right clothes, figuring out what diet works best for you. But really for me mentally, um taking care of my mental health and talking to other people was really what got me to where I am today, What what empowered me to show this picture off and I'll show you some, I have some videos I've posted on social media and I'll have her mary show those in a second. But really the first time I felt confident in my pasta, me. I went on a retreat with young adult survivors surfing And I asked my doctor if you'd be okay with my stomach get damaged. I didn't know I had not worn a swimsuit and shown my scars off whatever. But I went on this retreat, I went surfing, there was 11 other survivors with scars, different types of cancer, not only colorectal, different scars, all different places, they made me feel so comfortable and at that point my asked me did not have a name, but I have heard people named their osce to me. So I took my, you know, my clothes off. I had to work my cover up off. I had my bikini on, showed off my scar. They asked what my Ox to me was. I explained it to them and they're like, let's name it. I was like, okay. So they sort of asked me what the asked me did and I'm like, well, you know, it kind of fills with my stool and, and so that's what, what you know, helped me name. I asked me, they're like, well, let's call it Phil, not P H I L F I L L. So essentially me and Phil are a package deal. Um, I think a lot of people, I wrote an article about excess baggage. You know, people have baggage in their life. I don't necessarily think my Ostuni is baggage in a bad way. It's just baggage that's helped save my life. And so I'm very proud and I will talk to anyone that has any questions about an Oscar me at the beginning, middle, you know, years after their journey because it is a constant, um, it's a constant thing. As far as survivorship with cancer, you know, they have good days. I have bad days. Um, but finding the right appliance, finding the right community and finding the right support within your cancer center, your hospital has really changed my whole perspective on everything. So with that. Um, I will play a view of these videos and maybe save you comments after you've seen the third one, the sound is missing, but these are all from Tiktok. So you can sort of see the words and read them. So so I will leave you with a few words, Those um I saw videos on Tiktok and during Covid. Um I turned I do a lot of social media but I turned to Tiktok and there's a whole Austin community that you know, we are our own best advocates. Obviously the experts know know about the bags and the different appliances and the nutrition and everything. But this was so empowering by sharing my story that I went from, I don't know, I had 50 followers at the beginning. So now I have 13,000 people that that follow and listen and and reach out to me and if I don't know the answer, I I will send them to the right people for support. And I've met some amazing people through this and like I said Phil and I are a package deal and we want to help as many people as possible. Thank you so much. That was very powerful. I love the videos, thank you so much for sharing that with us. So um at this point we have gotten a few questions. Uh so mary Brent Brown is our wonderful research and program coordinator, she'll be coming on to help us go through some of the questions. Hi everyone. Alright, so let's get started with the Q and A. Um the first one is asking who should I contact for maintenance checkups on my class to be over time. So they had an Austrian nurse when they were discharged from the hospital. Um but don't have contact with her. And should the G. I. Doctor be the contact or someone else guess I'll take that one. So I'll tell you our practice here. We're lucky. We're very fortunate. We have a very supportive colorectal group here that we see our patients within in the outpatient setting within the first month, three months, six months yearly. So I would ask that you look to the center where your surgery was done. Hopefully they have some type of either stomach clinic or wound clinic type. I would contact maybe the surgeon's office or the G. I. Doctor and say where do you recommend that I seek? Um Just it's like having any kind of check up. You go to the physician to have your eyes checked yearly. Um other stuff. So really um and it prevents a lot of complications. Also it looks um whether the newer products out there as we know it was mentioned about filters being on pouches, clips and in different ways that we um the products have developed. So I really do encourage yearly visits and seek out that um Source, otherwise you can go on the Uo a website or the W. O. C. N. Website and you'll find listings in your area. Thanks Diane. And then the next question is for Allison. So is there a site that they could refer patients to for your Tiktok and social media information. How should people access that? I can send you guys my information. You can send it out. My Tiktok is Alison Rosen 04. Um, I wasn't very creative when I first set it up during Covid because I wasn't quite sure I wanted to do Tiktok, but my Tiktok is Alison Rosen oh four. And then instagram and facebook or alley cat three A T A L I C A T 380. And I'm on, um, basically if you google Alison Rosen colorectal cancer, you should be able to find my social media. But um, I'm on all of it and it has been so rewarding to connect with people all over the world. That's great. Thank you. And then we also have a question that was submitted ahead of time. Perhaps doctor in convention. This, it's more about screening for colorectal cancer. So even before costumes. Um, and it's asking about African Americans and whether they're screening age is going to be lower to lower than 45. Since that's kind of now, the average population age since they're at higher risk if you don't mind answering that, You know, it's a great question. You know, um, the current United States preventive services task force did not distinguish starting age by race or ethnicity. So it really is recommending that everybody who is at average risk start at age 45. That being said, it's really important to talk with family members about whether there is a family history or some other high risk condition or risk factor. That would make sense for somebody, particularly somebody uh from the african american community community to get screened a little bit earlier. There are some gastroenterology associations that do recommend that blacks get screened. That's starting at age 40 rather than 45. So again, I think it does need to be individualized. But currently the recommendation from the United States preventive services task force, which insurance companies are tied to for coverage recommends that everybody gets screened starting at 45. Thank you. I agree with DR in completely. I also used to as a colorectal surgeon do lots of colonoscopies. Most of the people I scope for people I've operated on or people that I see in the office that have bleeding because they come in because they have hemorrhoids or something else. And every once in a while we'll find a colon cancer. But I used to generally screen African American patients who are in the office at about 45 with this new drop in age. Um, it's probably increasingly harder. Like dr points out to get people in at 40. The one modification that I would may my practice is is if I saw somebody who is at higher risk who also has other risk factors for colorectal cancer. Um not necessarily family history because it's easy with the family history to get it approved, but somebody who smokes um some, you know, significant smokers, Somebody who drinks um those are really other than an inherited syndrome or a family history. Those are probably the two biggest modifiable risk factors. And the only other one that's recently been added is eating lots of processed meats, You know, so if you like Oscar Mayer that probably places you in a little bit higher risk, but really the only two that have held up over time that are modifiable risk factors that have been proven or smoking and drinking. So if I had an African American patients who you know, you know smoke a pack of cigarettes a day and had a couple of beers every day um I would definitely be looking for a way to screen them sooner than 45 if they were in my office for some reason. Um You know, and I think the jury, we we definitely think that obesity is probably linked to most cancers um and probably processed meats. But the link between those is not the same at with the current level of evidence as it is with smoking and drinking which have been there for 15, 20 years every chapter I ride on rectal cancer, especially rectal cancer. Those who are very, very strong way way anything to add to what I just said. No, I think that's all um correct. And I agree with you any reason to try to get somebody who's african american screened earlier. We should do it. I'm just getting thinks. So the next question is for diane. Oh sorry go ahead. Is one of the reasons I think dr ng and I are you know focused on that is because not only do african american patients or they are at higher risk but um in many studies stage for stage with all other things equal, they still unfortunately have a worse outcome right now and that's what we commonly refer to as disparities and it's unclear why when the treatment is the same, The risk factors are the same. The surgery is the same that the African American patients have a worse outcome which is probably just as much of a reason um to screen African Americans earlier um as the fact that they're a little bit higher risk from a population standpoint is because they just they probably have anywhere from depending on who you read or what you read at 15-25% worse outcome when everything else is equal. All right, good. And just a clarifying question on this, someone is asking if we should assume insurance is now covering screening at age 45 or if patients need to double check with their insurance companies. I think there probably is a period of time for that is needed for insurance companies to update their policies and their coverage. So given that the recommendations were just finalized and published about a month ago um I probably would give it some time and just talk and check with the company to see where they are in terms of updating that policy. But soon enough it will be updated to cover screening starting at age 45. Okay good deal. All right. And then for diane. So someone is asking um basically for a contact list of how to contact you if you have an outpatient clinic I can definitely send that to everyone in the email. But do you have something that you want to mention on it now? Um No I think that you know we have clinic five days a week. We see eight patients a day type of thing. That the visit is usually an hour in length and we address everything from A to C. Um his father what the patient needs please do. You're welcome here. Okay perfect. Thank you. Alright. And then we have a question that is asking if anyone has any thoughts on training their rasta me or who they could talk to about that. I'm not really sure what the thought of training is. I'm not sure if it's nutrition or so I'll take half of this. Is that I think that some people you know there was some practice about I'm training a colostomy and maybe that has to do with irrigation. So we do teach our patients with sigmoid colostomy is who have completed their course of chemotherapy or radiation um to irrigate and this is a training of the storm a where you instill a certain amount of water and you get return and you you have to be diligent. It's like being married, you have to do it every other day um around the same time you can get divorced. But you you know, it's it's a commitment. I always say irrigation is, I'm not so sure about the nutrition and so I can't really answer that. So I refer that to julie. Yeah, I would I would agree with that. I don't I don't look at the adjustment that occurs physiologically and therefore tolerance wise over the 6-8 weeks as something you're training versus that your body is just becoming acclimated. Um and I think the body in this sense is an incredible thing and that way it's able to kind of learn the new anatomy and what needs to happen um to make it work. So, you know, people's experiences at week two are different than their experience at week 67 and eight. And I think that's a beautiful thing, but I don't think it's anything that people actually can do other than use good common sense and and follow the guidelines. The other thing that I would add in is that I'll often see people who have had surgery, they've had a bowel prep, they have an osce to me or an Elias to me or a colostomy and they'll have complaints of excess gas or excess output. And I think that um there are certain medical conditions that can cause that if you've had recent antibiotics, if you take acid reducing agents, if you have had a bowel prep recently, that can all of those can change your microbiome, which can actually make you have more or less movements either through your rasta me or if you're fortunate enough to not have a permanent Ostuni um you know through your normal bowels and probably the best thing to do for that other than getting tested for, you know, I always say celiac disease, lactose intolerance and small intestine, bacterial overgrowth. Those are probably the three biggest causes. But the other thing is it's the foods that we eat, So keeping a very strict food diary, you know, so what you had for breakfast and then what your bowel function was like and how much gas what you had for lunch and actually writing it down, not just, you know because everybody says it's like when you're counting calories right? People say, oh yeah I know what I'm eating, I'm watching, but when they really count their calories, they know I can only get 2000 when they hit 2000, they stop, it's the same thing, you actually have to write it down because it makes a big difference. And then generally after a couple of months um whether it's normal bowel movements or an Oscar me, if you write it down, you'll see the pattern and every time I have, and I tell somebody to do this and they actually listen to me. Um Most most patients are like my Children, they just don't listen. Uh But when they finally do listen, they actually come back in and they don't even bring their their diary, they're like dr Goldberg, I figured it out. You know, it's usually garlic, onions, ginger, you know, broccoli, cauliflower, brussels, sprouts, they're cruciferous vegetables. The other thing I would say is you're having problems with small, intermittent obstructions. The the best thing to do is a food diary. Diane has a list, I have a list, julie has a list, I'm sure Allison has a list of what she can and can't eat or if she eats, you know, vegetable a what she has to do to eat that vegetable, right? And so, you know, I generally tell people nothing with the peel or skin, certainly when they're starting out. Um And once you get more experienced um And you don't mind masticated your food to find um you know, pulp, then you can probably eat most things. But a food diary once again will tell you what you can and can't eat because no matter how well you chew it. If you have a particular food that's giving you a problem, you will pick it up on the food diary and just to elaborate um Like I had said, we do have a really nice food diary that talks about the mood you were in when you went to eat the amount you ate, the timing, the type of food as well as the G. I. Disturbance or positive outcome that you had from it. So I'll send that to mary Brent as well as part of what she forwards to everyone. I thought everybody was happy when they ate. Um Sometimes people eat too much when they're not happy. I keep, I kept a food diary and um it really helped me a ton. That was one of the first things that he told me to do. And I think also one thing um for a patient and for whoever medical professionals are on this the first time I saw maybe a piece of corn or something in my, in my soma or in my my stoma um in my bag, I get that a little bit and some of that, if I want to have, you know, an orange, I might see something, you know, I choo choo choo choo um as much as I can, but, and you know, don't freak out is what I'll say, if that does happen, that's a great point because all of those connective things or partitions or like you say, the shell, that is the actual kernel, you know, that's all made up of cellulose and we don't have that enzyme celulas to digest that. So even if you pulverize it really well, it's going to pass through somewhat unchanged and therefore you can expect it and still eat those things that are valuable to you. That's great. Thank you all so much. Yeah, I think we're we're out of time and we want to respect everybody's time as well. So thank you all so much. Please fill out the evaluation form that we will be sending out and we will be passing along all of those guidelines and recommendations and sources of information who you can contact for anybody else who has additional questions. Thank you all so much for attending.
